We decided to look after my mother Elizabeth on a permanent basis in early 2009 shortly after her GP had called on her and given her a memory test. The GP had been concerned about missed appointments due to confusion about dates. She arranged for a consultant to see her. The outcome was a diagnosis of mixed Alzheimer’s / Vascular dementia. From 2013 she moved into a care home at Abbeyfield the Dales in Ilkley.

This is an occasional diary of events from 2009 to 2022.
2023 update: the Diary is extended to include the Probate process and the ensuing sibling skirmishes.

Some names have been disguised.

This is a link to some Abbeyfield reviews: Abbeyfield Grove House Residential and Respite Unit

Friday 28 April 2017

       

26 July 2008

I think I might have made that up

Mum was well into her 90s when we took her on memories trips around Scotland. One was to see some of the places she was stationed at during the War. Another was a visit to an island – Lismore – off Oban to see the land of her Stewart ancestors. Having spent a lot of time on the genealogy of her family, I was puzzled that there seemed to be few links with the west coast. Sitting in a cafe in Oban, I voiced my concerns. From across the table came a few titters: “Oh dear, I think I might have made that up,” she said.

26 Dec 2008

Recently, there have been incidents that have concerned us. One day I arrived at Mum’s to find the house full of gas. She was sitting in the lounge reading, oblivious to the smell. Then there was the electric kettle that melted on the gas hob. The lodger got the blame for that. She is booked in for a memory test early next year.

My brother and his partner came to see her for Christmas. I asked him if they were going to take her out somewhere. He said "No", as though the idea hadn't crossed his mind. Eventually, we drove separately to Ilkley and arranged to meet at Craiglands Hotel for afternoon tea. I waited in the foyer with Mum for 30 minutes beyond the appointed time. Mum couldn’t understand why we were hanging about; we were just about to leave when they turned up, saying theyd been doing some window-shopping.  I knew it wasn’t an oversight, but a deliberate snub, a childish attempt to put one over on us.

2 March 2009

Mum tripped on the steps as I was taking her for a walk. With my brother, who was on a short visit, we got her back into the house and called her GP.  A Dr Yates came out. She was a hands-off doctor, examining Mum from a safe distance. She said there was nothing broken and prescribed nothing. A week later, her usual doctor had to prescribe medication for inflammation and bruised ribs.

30 March 2009

My brother has proposed an overnight visit with my nephew to give us a short break. He has booked a Megabus at a cost, he boasts, of £3. But it terminates somewhere in south Bradford, so he wants me to pick him up. I tell him I do a lot of running around for Mum (and for some of her friends) and want a break from all that. He understands, sort of: “I see. Will get a taxi but can you take us back on Sunday morning?

31 March 2009

We visit Abbeyfield, a care home in Ilkley, and view a room reserved for respite use. The staff seem happy and friendly. The place is spacious, light, well-equipped and clean. Mum seems impressed with the flexibility of the place and its proximity to the town. She would be happy to stay for a long weekend, but not for longer, she declares. Later, she says, she would be OK to stay for a week.

As a trial, we book her in for 5 nights in June.

4 April 2009

When my brother and his son visit us, I bring up the question of funding Mum’s care. I tell him I want a signed IOU stating that he will be responsible for a half share of the costs.  But he waves the request aside saying I am splitting hairs. It’s not a good answer. Later, I reflect that this is when the splitting of the heirs began.

15 April 2009

In a conciliatory mood, my brother writes: “I much appreciate your sacrifice in looking after Mum. I couldnt do it! I'd probably have to check in to the local funny farm after a while!

This is very welcome. It isn’t really a sacrifice, though: more of a privilege.

He also mentions a £300 monthly payment to go towards looking after Mum (so that he doesn’t have to).

Last Christmas, prompted by J (his partner), he offered to pay us £325 plus a weekend’s visit every month to give us respite. 

Perhaps he hopes the £25 reduction in his commitment will go unnoticed.

8 June 2009

Though apprehensive at first, Mum seems to have enjoyed her first visit to the Abbeyfield Respite Unit. The carers say she was a pleasure to look after: she was pleasant to everyone; she kept to herself, reading in her room. She has nothing derogatory to say about the experience except that the other residents stick to their cliques and are very dull.

28 August 2009

Nicholas, my brother and his partner Jacinta say they are coming up but prefer to have Mum "all to themselves" so as to have "quality time" with her.

This is because we don’t really get on: we think J is a bit of a know-it-all, judgemental and confrontational, while N is lazy and doesn’t give a stuff about his mother; they think we are rude, unwelcoming and are trying to shut them out.

On a recent visit, he told me he thought of themselves as guests and complained that we hadn’t offered them lunch before they journeyed back to London. (They were offered lunch but opted for a Mcdonald's.)

On another occasion he made this gaslighting comment: “I do not wish to visit...again owing to your strange...behaviours, which you can take the blame for entirely”.

I mention their plans to Mum. She says he just wants to ask for money to help with her grandson’s school fees. But "the old lady hasn't got any" and: "I'm certainly not giving money for school fees".

[the backstory to the school fees issue: Mum has always disapproved of private schooling; N boasted that Millfield awarded his son a partial bursary after he and his wife pleaded poverty, claiming their company  paid them almost nothing - without mentioning the high dividend payouts.]

Pam tells her: "he'll probably want to take you out to an expensive restaurant and take care of you". She responds with: "That boy? You must be joking! He likes to tell people he can do everything. He likes to do a lot of blowing."

6 September 2009

Collecting Mum from Abbeyfield after a respite stay, we start to have our first doubts about the place: Pam notices that Mum smells strongly of urine probably as a result of an earlier accident.

13 September 2009

We went off to the Lakes for the weekend, while my brother and J took over to give us respite.  We got back at five-ish, to find Mum alone – there was nobody at the house. When I phoned to ask how it had gone, N said that J returned to London the previous day for an scheduled business meeting.  Thing is, when I checked the phone records, he’d had a long conversation with someone in Brighton, where J’s sister lives.  We concluded they’d had an almighty row, whereupon J stormed off to her sister’s, abandoning Mum to the tender mercies of her son. 

5 November 2009

N visited his mother at Abbeyfield and took her to Betty’s CafĂ©. He thinks that a brief visit every 6 months or so qualifies him to offer his opinion on her health: "Mum was fully alert with me and we walked from the home to the centre of Ilkley. I sometimes wonder if all this hysteria about her not coping is just that."

17 November 2009

She was still fully alert when, earlier today, Mum wrote that her younger son  should be responsible for his share of the house maintenance, repairs etc and my maintenance”. As she struggled with the pen, she remarked: “he likes to shove off responsibilities” and warned me not to let him get away without paying: “if he’s not forced to, he might get out of it,” she said.

1 March 2010

During a respite stay, the senior carer asked us, sotto voce, if Mum would want to be resuscitated. So I turned to Mum and asked her directly. Without hesitation, she said (loudly): "NO!"

2 June 2010

Mum phones from Abbeyfield in a confused state, claiming that things in her room are missing and that members of the staff have been in there with their friends. She thinks they have been having parties there.

8 June 2010

When we collect Mum from the Respite Unit, half her clothes are missing. Abbeyfield dont seem to have any kind of system for keeping track of residents laundry. More worrying, we find a badly swollen ankle and unexplained contusions on her leg.

3 July 2010

Mum spends her days reading and re-reading the papers, cleaning and re-cleaning her glasses. She often complains about books she has lent to people that have not been returned. Sometimes, with a twinkle in her eye, she complains that she’s been left alone with no company and nothing to eat or drink: "I’m a poor, neglected old lady," she declares.

She often comes up with gems of truth and wisdom. Today she remarked:

"I've another son. He's not at all keen on his brother having taken over here". And later: "I've got one down in London who doesn't care a button about me".

28 October 2010

Just before taking Mum for this respite visit, she tells us, "I don't want to go [to Abbeyfield]. I can look after myself. I can make a meal. Can't I stay here?"

On collecting her, we are assailed by a strong stench of urine in her room. We trace the pong to a bedside locker, finding two or three pairs of wet and soiled knickers and pads wrapped up in a plastic bag. The contents are too noxious to examine closely. We hand the package to a staff member for disposal. She doesnt apologise or even bat an eyelid.

We always mention Mum's inclination to secrete knickers and pads when we arrive for a respite stay.

But the staff have rather a casual attitude to this and other information we provide there is no systematic means of recording what we tell them so that all members of staff can see it.

We have always been a little perturbed that only one staff member ever conducts a proper induction on admission. When she is not on duty, nobody else does an induction so nobody knows if there are any changes in her mental or physical state, to her medication, to her behaviour or to our contact details.

And when we collect her, the staff seldom take the trouble to brief us on how things have gone.

We wonder about the 3 Star rating bestowed by the CQC.

24 December 2010

On a day visit to see his mother before Christmas, I overhear my brother (N) talking about his son: “he’s not interested in presents. He’s only interested in one thing – money. He’s doesn’t care how he gets it as long as he gets it.”  At this, Mum sounds a bit disturbed:  You mean he would do something illegal?

N responds: “Not illegal but on the borderline.” J butts in: “N’s exaggerating.”

18 January 2011

My brother owes his mother thousands for loans and owes me thousands for payments he dodged for work done on the roof, a project he organised.  He often mentions his property empire and his business acumen, boasts that never fail to irritate.  I send an email: “I hear you have 14 properties and are doing very well….it would be a perfect opportunity to pay off some debts”.

He responds: “Yes Im a millionnaire in debt! Dont think most people have any idea about business. Actually I have no cash in the kitty whatsoever, plus Im overdrawn at the bank and have nearly £20,000 on credit cards! No cash reserves! Asset rich, cash poor, they call it!

So wont be making any contributions to anyone in the near future! Hopefully we'll sell the house and all debts can be deducted from that”.

2 June 2011

After a written complaint about last years incident, Paloma, the manager, sent a letter of apology and things have been much better since. There is even a laundry-tracking system in place and they now ask for a luggage list on admission.

We collect Mum from her room. She looks well but remarks that she had a fall trying to get to the commode, which was not where she expected it to be, at 2 or 3 am last night. She has a swollen right knee.

I ask Paloma about it. She knows nothing about any fall.  I persist and ask how she could have got up from the floor.  At last the manager looks in the Daily Diary and finds that an unidentified person has written that she "slipped off the bed" and was helped up and checked for injuries, though none were found.

I worry that if Mum had said nothing and I had not asked, we would not have known how she got her swollen knee.

30 July 2011

My brother visited, along with his partner and his son, as part of the deal to look after Mum and give us a break. We headed off to Fountains Abbey for a couple of days.

On our return the house security recorder told us that they’d gone out to the pub, leaving Mum alone for several hours.  So much for the “quality time” they were anxious to have with her. The fiction was exposed when J complains: “You’re in here, your son is in there while I’m washing the dishes and your mother’s somewhere talking the hind legs off.”

We also found that our bedroom had been used and the dirty sheets left on the bed.  Before they left, J started washing more dishes in the sink. My brother was heard saying: "Leave it, leave it – your name’s Willy, not Silly" a Glaswegian expression, a favourite of Mum’s.

12 October 2011

15 years ago, N converted the basement into a self-contained flat. He got his mother to pay for the work then rented it out to tenants. It was a commercial venture, but he paid no rent for the use of the premises and neglected to pay for the gas, electricity and water his tenants used, something that upset Mum greatly.

He used his mother as his (unpaid) agent, a function she was happy to perform if it helped her son make his way in life.  It wasn’t fair, though: she was expected to show prospective tenants round, to sort out all their problems, to deal with emergencies and to organise maintenance.

The flat nearly killed her once: at the age of 84 and with a new hip, she was showing an estate agent round. When he left, he locked the outer door and took the keys. She thought she could get out through the inner door but that was also locked. There was no means of raising the alarm: no-one would have heard her cries. Ever resourceful, she got out by managing to reach a tiny, 20” square window in the kitchen, then squirming out of it before dropping to the ground below.

Tiring of the noise and cooking smells coming up from the flat, I told my brother to give notice to the current tenant and to remove the kitchen, so as to make the house more saleable. He was keen on selling the house, writing: “we both have hopefully might have some money to spend”. But when he realised the house was not on the market, he bleated: "so the removal of the kitchen was in vain and I lost income".

27 April 2012

Today, my Invisible sibling proposed "an equitable financial settlement" that took account of my greater contribution towards his mother’s care.

But his formula included offsets that would defray his costs by incorporating a number of variables, including:

"the indirect utility of looking after Mum such as giving you the possibilty of staying with Pam and renting out your house ... and also the satisfaction of looking after Mum although this needs to be balanced by the cost of stress to yourself".

In addition: "you decided to retire and live in your paradigm so opportunity cost of loss of earning power is not a consideration".

In response, I wrote: "I am sorry to say this is a risible attempt to apply cost-benefit analysis to your Mother’s care. Cost-benefit analysis may have a useful function but not here – your Mother is not a business commodity".

I noted: "I do concur that there is enormous satisfaction in looking after Mum. Had you honoured your proposal of spending one weekend in four with her, you too would have the opportunity to balance satisfaction against stress".

2 May 2012

N has replied to my scathing email: "Clearly you are not persuaded".

Mums latest stay at the Respite Unit seems to go without a hitch until, that is, the penultimate day. Pam phones the office the day before she is due to come home to ask how shes been. Yes, says the carer, Elizabeth has been fine; there have been no problems. She is packed and ready to go home.

Oops not for the first time, Abbeyfield have cocked up the departure day.

Last time, they forgot she was due to go home so that when we arrived to collect her, she wasnt ready.

This time theyve got her ready to go home a whole day early.

It may sound inconsequential but Mum was excited at the thought of going home. It confused her to be told she wasnt going home after all!

Earlier in the year, we'd sized up a trio of care homes so that when the time comes for Mum to need residential care, there won’t be a mad rush to find a suitable place.

One was Glen Rosa, a Methodist-run home in Ilkley.  When we visit, we get glowing and unsolicited recommendations from relatives of residents. It seems a friendly, bright, stimulating and caring establishment. If care homes are an essential part of the modern world, this one is the model for all the others to aspire to.

Although Respite care isnt a normal part of the homes provision, they have empty rooms, so offer Mum a 10-day spell in one of them.

21 June 2012

On the due day we take Mum to her ground-floor room with a view of the well-kept garden. It has a basic en-suite bathroom and we find it odd that the home cant find one of those raised toilet seat contraptions that are a boon to the infirm.

Glen Rosa’s check-in process is disconcertingly haphazard Ian, the senior in charge, has no intention of asking about Mums needs, preferences and idiosyncrasies.  We tell him anyway and, to give him his due, he listens carefully and jots down a few notes on a sheet of paper.

We leave Mum sitting by the window, reading the newspaper, seemingly taking it all in her stride.

We go home, full of hope that she will enjoy her stay.

10 days later, I agree a time to collect her and check that there will be a debriefing. We turn up at 1:30 and sit in the public reception area.  Ian is not quite ready but brings us tea. While we wait, we overhear him talking to a man about his grandmother who is going downhill rapidly and doesnt recognise him. It strikes me that this is a conversation that should be taking place somewhere private.

Ian does take us to a private room and reports that Mum is quite confused. This means that were she to become a full-time resident she would have to go into their grim dementia annexe, called Kitwood House. We ask if there were any signs of anxiety and he remembers that she once said, "Why have they dumped me here?" He says he reassured her and that "to my knowledge" he cant recall any other such incidents.

But he doesnt have Mums Care Plan with him (he cant find it) and there doesnt seem to be a Daily Diary to which he can refer.

We find Mum in her room, slumped in a chair. She seems downcast. Although she doesnt say neglected, she gives the impression that this is what she feels. They are short-staffed, she says, "because of the holidays" and that is why the bed remains unmade. We notice this and also that the toilet has not been flushed. She repeatedly says it isnt like the "other place" (Abbeyfield). They arent keen, she says, to give her baths. She says the food is so-so.

She seems unaware that shes going home but once its sunk in, she perks up and her mood lifts.

As we pack her clothes we find soiled knickers in the clothes drawer wrapped up in newspaper. There is a sodden pad stuffed in her wash bag. It is excusable for staff to miss things that are well hidden. But her trousers stink of urine and I see that she is sitting on several sheets of The Yorkshire Post, which has left its damp imprint on the cushion underneath.

What happened is clear some time earlier, possibly the day before, there was an accident. So she removed her knickers and stowed them in the drawer, while the pad was stuffed in the wash bag.  She put the soaking trousers back on. To protect the chair cushion, she covered it with the newspaper. None of the staff seem to have noticed.

When I report our findings to Ian, he looks crestfallen.

To say we are disappointed is an understatement.

We revert to our old faithful periods of respite at Abbeyfield.

Post Script:

3 months later June, Glen Rosa’s manager, called asking if we wanted to keep Mum’s place on their Waiting List.

When I said No and explained the reason, there was a stunned silence: Ian had obviously kept it quiet.

17 August 2012

Glen Rosa isnt the only home that has problems with smelly underwear: on unpacking her things after a respite stay at Abbeyfield, we find that a member of staff has packed several items of stinking clothing in her case.

During some longer respite stays, visitors reported that my mothers clothes were stained with food, her hair was occasionally untidy, her chin unshaven and her fingernails uncut.

One regular visitor was so upset that she took some of Mum’s clothes home and washed them. The visitor reported this to management.

During our next visit, Mums clothing appeared fresh but her chin and fingernails were still unkempt.

Management was asked several times to ensure that my mothers hair was not cut too short when she visited the in-house hairdresser. These requests were always ignored.

After her respite stays, I suspected that my mothers dentures were never cleaned. During one prolonged stay, I challenged the home about this. I was told they always asked my mother if she wanted help with her dentures. This is fine for someone without dementia. But my mother probably declined help, forgot to clean the dentures and so wore them uncleaned, night and day, for 6 weeks.

We challenged the manager again but she stuck to her line about giving residents their independence and refused to accede to my request that the staff do the cleaning themselves.

6 September 2012

When we told Mum her old friend Mary is now in a care home, she shed a few tears – she had thought Mary wasn’t bothering to keep in touch.

She also betrayed some of her guilt about her other son: "some people say this and that about him but not me: I think he has done extremely well. I'm not running him down".

20 November 2012

In the mornings, Mum knows how to sit in the stairlift and work the controls, though we usually keep a watch on her.

Today, I forgot to put the seat down. It didn’t bother Mum, though: she simply squeezed past the chair and came down the stairs; we heard a noise and found her inching her way down.

19 January 2013

Talking about her youngest son, she remarked, "he thinks I don't think anything of him.  But I do.  It's just that I checked him for not doing his homework".

11 April 2013

We got Mum ready to leave her home of 53 years for the last time. She seemed OK about going - said Abbeyfield was a reasonable place. But she must have had a premonition about what was about to happen. After lunch, when I put on her outdoor shoes, she asked what I was doing, having forgotten about going. She then said, "I don't want to go - I can't be bothered, I'm too comfortable here".

After waiting 30 minutes, I tried again, saying I had to go up to Scotland. She responded with "I can manage here, I can get food in the kitchen, I can get the bus to go shopping". I said she was booked in and it is such a nice place. She said, "its not so nice there are boring people there".

But eventually she agreed to go: "You want to get rid of me?  Well, I suppose I'll go".

29 May 2013

I met the General Manager when she was temporarily doing Reception duty. I asked her to give Pam a bag containing a sheet and scissors, explaining that it was for the hairdressing she does for Mum. The General Manager’s ears pricked up: she wanted to know if the hair drier is electrically approved.

Paloma, the Residential Unit manager, later told us she had been   instructed that insurance is required for hairdressers! Paloma said it was ridiculous: "let's just forget about it".

12 June 2013

My brother made a rare visit to see his mother but spent most his time writing a letter to the Abbeyfield accountant, requesting a statement of her care bills. He also scribbled a note to me, demanding a "statement of account re Mums Will".  My scarcely visible sibling (this is only his 29th visit to see his mother in 5 years) must be getting anxious about his inheritance.

22 October 2013

Carol, the new manager of the Unit, has the day off.

This is unfortunate because we have an appointment booked with her.

Post Script:

A couple of days later we get an apology of sorts: "I forgot I had the day off".

Its not a promising start to her managership.

28 November 2013

Mums keyworker phoned to say she had a fall on Sunday 24 November at around 12:15 in the bathroom as she was pulling her pants up, falling forward onto her knees. The District nurse attended 3 days later and said one ear has had a perforated drum at some stage and the other has debris in it. The GP will come and have a look. The keyworker apologised for the lack of communication apparently they all thought someone else had told us about the fall.

3 December 2013

When Pam visited, Carol apologised for the fall last month. We arent sure why she felt the need to apologise because it sounds as if the accident was just that an accident.

Mum says she can't go home just yet because they don't think she is quite ready; but she doesn't mind staying at Abbeyfield "they do look after you", she says.

5 January 2014

Mum contracted a chest infection at the home and was rushed into Airedale Hospital with pneumonia.

She came very close to dying.

Her Invisible son was informed, but neither visited his mother nor contacted the hospital to ask how she was.

12 January 2014

Mum was allowed to sit in a bedside chair for 6 hours. Nobody came to move her or ask if she needed the toilet. Eventually, 2 nurses came to put her, with the aid of a hoist, back into bed. From outside the screen, I could hear one explaining to the other how the hoist worked. Suddenly, my mother yelped and cried out that they were going to drop her.

13 January 2014

We complained about the neglect and incompetence to the Consultant and his ward Sister. He granted us an appointment but insisted that care on his ward was fine. The Sister expertly dismantled our allegations and lied convincingly.

But our complaint did have the beneficial effect of improving Mums nursing care.

23 January 2014

The Consultant and his staff do not give up on Mum with the help of multiple doses of antibiotics she pulls through and is discharged back to Abbeyfield.

When we visit, she has no appetite and seems rather low, but is alert, watching TV, though not speaking much.

"I never thought I'd be like this. I'm supposed to be here to look after people."

29 January 2014

Despite her reduced mobility (they have to hoist her in and out of bed) she quickly recovers her spirits and is almost back to her old self reading the paper, putting the world to rights, laughing and eating and drinking well.

Then, less than a week after her return, we get news that she has been scalded. Its Marcella: "Bad news", she says. She has given Mum a cup of tea, told her not to drink it until it cools down and then gone away. Coming back 10 minutes later, Mum tells her, "I've spilt something on my leg". Marcella finds a 15cm long red weal and some smaller splashes on her left thigh. The large weal is blistering already. She puts a wet flannel on the leg and makes a VideoTel call to the local Hospital, which advises bringing Mum in for examination.

We drive her there ourselves. It takes about 2 hours at A&E to get the scald dressed. In the Waiting Room, Mum gets bored and says loudly, "I want to go now. I'm bored and tired of waiting. You only get to see a doctor for 5 minutes. Why can't they arrange an appointment?  I want to go now".

We eventually get back after midnight.

30 January 2014

We expected Carol, the manager, to get in touch to apologise for last night's accident.

But there was no phone call.

Mum is back to top form, having forgotten all about last nights trip to A&E. She has obviously been paying close attention to the news because we have instructed to start buying houses as prices are booming.

When we go to Abbeyfield, the manager tries to ignore us. I say, as we pass in the corridor, "Carol, have you arranged for the District Nurse to visit?"

"Yes", she says, declining to mention the accident.

She never quite apologises, however. She says there will have to be a Risk Assessment.

5 February 2014

As I walk past the office, I overhear Sue talking ominously about the wound. She says it is now infected. Jemima comes in and says it looks a mess. Mum says it is sore. This is partly because she cant keep her hands off the dressing: not understanding its purpose, she repeatedly rips it off

15 February 2014

The wound is now healing well, assisted by twice-weekly visits from the District Nurse.

We discuss with some of the staff about how such incidents can be prevented in future.

To start with, the staff need to be able to keep an eye on her by leaving her door ajar. But when I arrive, Mums door is firmly closed.

Then Sue brings in hot tea with a warning to be careful because its hot. Mum just laughs at her. We realise that nothing has changed and some staff appear to have learned nothing from the accident.

We decide on a more proactive course of action. We buy 2 plasticised aprons to protect her legs and pin up a notice on the wall asking staff not to give her tea that is too hot.

But the message does not get through to everyone we regularly find her being given cups of scalding hot tea. Both permanent and temporary staff are guilty, though as time goes on, the regulars get the message.

On the other hand, temporary and agency staff never seem to be briefed on Mums particular needs.

Post Script:

In July 2015 I posted a message on Abbeyfield's Facebook page entitled "There but for the grace of God", together with a link to a local news report about a resident of Troutbeck, a nearby nursing home, who was scalded by a hot drink and died later in hospital. The home was heavily criticised by the coroner for its failings. 2 years later, Abbeyfield gave a belated response to my post:  it pointed out that the incident had not taken place at Abbeyfield.  Management evidently thought the incident I'd referred to had nothing to do with them.  So I replied, mentioning Mum's scalding incident, voicing my hope that lessons would be learned. There was no response.

20 February 2014

My brother and Mums grandson visit. They stay an hour and a half. Kelly tells us later that she told him his mother had been seriously ill for much of January and asked him, in her typically forthright manner: "did you go to see her?"

"I was away skiing", he replied.

27 May 2014

The veneer on Mums chest of drawers has started to detach and its sharp edge could cause an injury. I have mentioned it several times to staff recently.

When nothing happens, I ask the manager about it and she promises to make enquiries about repairs.

It takes another 4 months and an intervention from the General Manager before a new chest of drawers is provided.

17 July 2014

Maureen, the cleaner, tells us she was working in Mums bathroom when she overhead my Invisible sibling telling his mother it was so sad that I, her son, am "just a toilet cleaner". As Mum stared blankly at him, he laughed uproariously and boasted that his own son went to Millfield, an expensive public school. Maureen says she nearly burst out of the bathroom shouting that her son, the son of a cleaner, went to an ordinary state school, got a First at Oxford and now has a lucrative job with Goldman Sachs.

22 July 2014

Mums front tooth has snapped off. I ring round half-a-dozen NHS dentists but cannot get an appointment for months. So Carol books a private dentist: even this entails a 3-week wait. I assume she will have checked that the dental surgery has wheelchair access.

14 August 2014

On the day of the dental appointment I decide to visit the surgery myself first. I discover it does not have wheelchair access and am forced to cancel the appointment.

8 October 2014

Mum says, "I'm nearly 100, you know". I'm going to have to retire and I don't know what I'm going to do".

12 October 2014

After much phoning around several weeks ago, I found a dentist who was willing to make a domiciliary visit. When I visit Mum today, I find an appointment letter stuffed away in a drawer.

On a previous occasion, we missed a hospital appointment because the NHS insists on sending letters to the patient rather than to the appointed guardian.

Abbeyfield compounds the problem by handing all mail to residents because to do otherwise would contravene their human rights.

It once handed Mum one of its own letters that detailed the fees it was going to charge for the following year. This upset her so much that she had to be calmed down.

When a resident has dementia, such a policy seems to us to be bonkers.

When I confront managers, including Carol, the Registered Manager, and Jackie, the future General Manager, about the problem, I discover it comes as something of a surprise to them.

Eventually, Carol follows her time-honoured tactic of producing a Disclaimer for me to sign. It authorises the manager to open official-looking letters and to contact me about their contents.

Post Script:

A year later, its obvious that Abbeyfield have completely ignored their own policy we still find letters, both personal and official, hidden away in drawers in Mums room; letters about appointments still go missing; and the home have never once phoned me to tell me about any letter they are holding for Mum this includes the card the Queen sent for her 100th birthday.

27 October 2014

My Invisible sibling gets a solicitor to write to me to suggest that I sell her house in the "interest of both Nicholas yourself and your mother." 

As my mother’s Attorney, I am legally obliged to act in her best interests. Not my best interests; not my brother’s best interests. Any competent solicitor would have known this.

The letter is mainly to do with our ongoing dispute about financing the roof replacement in 2009. He agreed to pay half, but has since pleaded poverty and persistently deferred payment. And now he is refusing to pay up on the grounds that “I'm not living there and not receiving any benefit [from the repairs].” He goes on: “There is no need to respond to this e-mail save to agree with my point of view.

Post Script:

He later relented (sort of) with this proposal: “My legal representative Sandra Jayacodi would be suitable to mediate although ultimately she would be acting in my best interests.

One day we bumped into one another at Abbeyfield. Looking for something to say, N boasted that he'd just sold a property in London. As he was flush with cash, I asked him to cough up what he owed me for the roof. When he refused, I sued in the Small Claims Court. He didn't turn up, so I won and got my money at long last.

18 December 2014

My Invisible visited his mother along with his future wife. They were kind enough to leave a pot of flowers, a Christmas card and some toiletries. They took Mum to Betty's Cafe. In the Visitors' Diary they left a detailed description of what they had to eat and drink. They also  left a bill that showed they spent £70 on salmon, chocolate ice cream and pink champagne. How careless was that? In a transparent attempt at a put-down, they wrote: "She mentioned she rarely gets taken out so this was a most welcome experience." The message was clear: ‘you are obviously neglecting our Mother; look how well we treat her’.

26 January 2015

Yesterday I asked Mums keyworker to take Mum downstairs to a Burns Supper event on the afternoon of the 26th. It was written down in the Daily Diary. Pam went along at 4:30 and found Mum in the toilet, wearing yesterday's clothing. Pam took her down to the Supper but found that the staff there had not been told to expect her. There was no room for Pam and, not wanting to leave Mum alone in a strange place, she took her back upstairs for tea. Fortunately the friendly piper came upstairs and played for her on his pipes. I am not sure if that was a good or bad thing!

While talking to Mums keyworker about this, I mentioned that her chin often needs shaving - shouldn't that (and her fingernails) be part of her care? They are small things but their neglect adds up to a loss of dignity - she would be horrified to think her chin was like that.

The keyworker agreed but then asked if there was a razor in the room.

18 February 2015

My Invisible has phoned Mums solicitor demanding a copy of her Will. Perhaps hes worried that she may have cut him out of it. Quite correctly, the solicitor said “No”.

On a pleasanter note, he’s invited us to his wedding in April.

23 February 2015

My lovely sibling writes: “I do not wish my emotional health to be affected by seeing you and your dreadful partner the wedding invitation is withdrawn. So FU

9 April 2015

The home reported that Mum sometimes gets agitated at tea-times. Her GPs answer to this was to prescribe Paracetamol on the grounds that it is pain from her knees that brings on the agitation.

Carol, however, says it is caused by Mum not liking the food she chose from the menu earlier in the day. Apparently, when she gets what she ordered, she sometimes refuses to eat it, wanting instead to have what others are eating.

Carol produced one of her Disclaimers, to be signed by me, permitting the staff to override her choices for something more appropriate.

Rather than employ common sense and gently persuade her to make a suitable choice, Abbeyfield would have us endure this bureaucratic, politically correct, box-ticking rigmarole.

At Jo's suggestion, I produce a tea-time menu of things she likes (Welsh rarebit, scrambled egg, crumpets etc). I say she doesn't like curry. I say the portions are too big (she is now 11st 11lb, having put on 2st in 3 years) and tell them that she is of the generation that does not like to leave food. I also say she prefers vegetarian food.

Jo notes all this then says she wishes there were 16 more residents like Elizabeth to look after because she is no bother. And if they want a laugh they just pop in to see her.

6 May 2015

When we arrived earlier today, Claire was looking after a man in a suit who turned out to be a CQC Inspector on an unannounced audit. We spoke twice, at length, with another inspector, called Sandra, a former paediatric nurse. She said any feedback we gave would be anonymous but took our names anyway.

We told her as much as possible about Abbeyfield: the scald saga, the damaged furniture saga, the lack of tooth care etc, etc.

I mentioned Carol, the detached Manager, and also told her about earlier complaints raised with head office and with Paloma, the previous manager.

We gave praise as well - we said we were happy with how the pneumonia episode of 2014 was dealt with. We said that agency staff are never briefed on Mums care needs but the regular staff have greatly improved their practice. We said all staff are excellent and that Abbeyfield is in the top flight of care homes.

Mum chipped saying she was well cared for and the food was good.

Sandra asked if we were happy with the room so I said it was Mums own choice.

Post Script:

When the CQCs Report was published later in the year, only our favourable remarks were printed. None of our criticisms appeared.

5 June 2015

Carol presents me with another Disclaimer to sign. This one is to countermand Health and Safety regulations, which apparently require Abbeyfield to keep Mum’s bed low during the night in case she falls out. As she cannot get out of bed from such a low position, Claire thinks she is more likely to fall while trying. Floella, a senior carer who is often on nights, tells me she keeps the bed high during the night - it's common sense - and gets a slap on the wrist when it is discovered in the morning.

10 June 2015

Pam arrives and takes Mum down to the lawns for Abbeyfields Open Day. There are tombolas, raffles and so on and she thoroughly enjoys herself.

None of the other residents are there, except Lavinia, who is more able-bodied than most.

The staff, it seems, do not bother taking people outside unless they are asked.

But Mum is not a demanding lady and hardly ever asks if she can go out. Once prompted though, she is always up for a trip downstairs to sit in the sun with a dripping ice cream in one hand.

At Abbeyfield this seldom happens.

24 June 2015

Mum went on a barge trip on the local canal, a trip shes done before. The barge is run by SCAD, a Skipton charity wheelchairs can get directly on to the deck and down to the saloon.

She was on deck when the helmsman lost concentration and the barge drifted to the bank and hit some low overhanging branches. The helmsman shouted a warning but too late. Pam screamed then flung herself over Mum and pushed her head down. She sustained abrasions and bruises to her arm and wrist while Mum had a small scratch on her eyebrow and complained of a sore shoulder. A crewman said it was a 'minor miscalculation'. 

They didnt bother reporting the incident to SCAD management.

But I did.

However, other than declaring that they were all "dedicated volunteers, some have been with us for many years and are trained to the highest standard required by the NCBA", SCAD seemed unconcerned by the incident.

Post Script:

SCAD collapsed in 2022 - bad management.

25 July 2015

We took Mum out for a meal at the Clevedon, a favourite restaurant. A shame they forgot to provide the birthday decorations we asked for.

Mum looked at her cards and said of the Queen's card: "Well, I do send her a card every year!"

26 July 2015

Mums 100th birthday party went off a treat. Most of the other residents turned up and Abbeyfield laid on sandwiches and champagne. Mum was a bit daunted by all the attention at first but soon got into the swing of things. By the end she was lecturing the others on the importance of good relations with the French.

3 August 2015

I had earlier given Carol a brief biography of Mum and she promised to send it to her contact at the Ilkley Gazette for inclusion, together with one of her photos, in a piece about the 100th birthday party.

We kept looking for the report until, at last, I phoned the paper. The local reporter said she had received nothing from Carol. So I sent her the biography myself, including one of my photos and the article appeared on 6 August.

7 August 2015

Pam took Mum down to the homes Strawberry Fair, with more tombolas and raffles. She won a suitcase and a box of stale chocolates in the raffle. None of the other residents attended. Mum would not have been there if Pam hadnt taken her.

We wonder at Abbeyfields policy of organising events without inviting its own residents.

Mum is bemused by the article in the Gazette: "How did they know about me?"

She has to be reminded about her 100th birthday.

Every few minutes she asks the same questions in exactly the same way. It is as though her brain remembers the question but she herself does not. Somewhere in her mind is a sense of self that tries to maintain normality.

The day after the Gazette article appeared Val, a friend of Mums from the Scribblers (a writing group), called at the house to offer her condolences on Mums death. "Who told you that?" I asked, with mounting horror. It transpired that a friend of a friend had seen the article in the Gazette and somewhere along the way the story had morphed from a birthday celebration into a death notice. Confused and embarrassed, Val made her exit. I doubt she will ever return.

In common with most other members of the Scribblers (of which Mum was a founder member), Val has often promised to visit her old friend but has never done so. The exception is Carin, who lives just across the road and visits once a week, at least. Val often rings Carin for permission to use her parking space, but only so that she can go shopping, not to see her old friends.

13 August 2015

Paloma, the former manager of the unit appears. Mum says, to her face, "I know that fat lady from somewhere". Paloma isnt put out: "It's true," she says, laughing: "I'm fat".

15 September 2015

Claire tells us the District Nurse has reported that the second toe on her right foot gets rubbed where it crosses the bunioned big toe. She asks me to go and buy a toe tube to protect it.

Briefly, I wonder why the NHS cannot provide a toe tube but go out anyway and buy one from Boots. I see it is a foam tube that you cut to size. It has an oily inside.

The instructions say: Remove overnight to allow skin to breathe.

26 September 2015

While getting Mum ready to go out to an over-90s event at the Clarke Foley Centre, Pam notices that the foam toe protector is damp and, instead of being cut to size, has been crudely folded over.

It looks as if they shower her while the tube is on, which cannot be good practice.

Along with some other residents, the staff load her on to the minibus transport. But there is limited space for wheelchairs so she has to get out and struggle along the narrow corridor to her seat.

Carol and Kelly, a carer, take the other residents into the venue.

Mum is last to go but members of staff disappear into the venue and don't come back.

So Pam, with help from the driver gets Mum up and into her wheelchair and into the centre.

30 September 2015

Abbeyfield alerts Pam to the fact that Mum has stripped the skin from her second toe. They don't know how it happened but think she may have stubbed it. Photos of the injury are to be sent to the doctor.

I learn this when Pam phones me to say she is her way to Abbeyfield. I am halfway up the Inaccessible Pinnacle in Skye at the time.

Claire agrees that she probably stubbed the toe. She says that a few days ago she noticed the toe protector was "manky" and removed it.

2 October 2015

The Dentist arrives unexpectedly, a few days ahead of schedule. She says the gums are inflamed and confirms our long-held suspicion that her teeth are seldom brushed. Only a few days earlier Pam had confronted her keyworker about the fact that her toothbrush is always dry and hidden away in a drawer - the staff clearly never clean her teeth for her.

They would probably say they always ask and that she always says: "No".

Kay says she will make a note of our complaint.

The Dentist leaves instructions on brushing with the staff.

The District Nurse comes to change the dressing on the toe. She has brought the wrong dressings, though. She puts something temporary in place and leaves, saying she will return.

She doesnt.

Seething gently, Pam waits for her at Abbeyfield until early evening.

During the long wait she confronts Jemima; Carol, the manager, stays in the background saying nothing. Pam accuses the staff of negligently misusing the toe protector tube by keeping it on at night and in the shower, hence softening the skin. She tells them that under no circumstances is the toe protector to be used again. She says that on 26 September, when she removed the slipper to take her to an over-90s outing, she noticed the toe was wet and soggy and the toe protector was too long and had been folded back on itself.

Carol says nothing.

3 October 2015

During the night the temporary dressing fell off. A member of staff (Jemima) called the District Nurse service and someone came out to put a proper dressing on. But the toe was unprotected, without a dressing for well over 12 hours.

Pam visits and talks to Jemima in the reception area, with Carol sitting nearby.

Jemima repeats the theory that the injury was caused by stubbing the toe, perhaps on some furniture.

Carol could have intervened and either agreed with the theory or rubbished it. Instead, she says nothing.

11 October 2015

Kay tells us what actually happened to the toe, having just asked Charlotte, who first reported the injury. Charlotte says she showered Mum that morning; she did not see a protector on the toe; after the shower she noticed the skin was coming off.

13 October 2015

We get a report from the District Nurse that the entire toe has degloved, that it is infected and that there are signs of necrosis.

In a panic we phone the District Nurse Service and Mums GP, trying to find out whats going on and what is being done.

At Abbeyfield we find 2 tablets of her medication hidden in a pocket. Clearly, the staff dont always bother to supervise residents when they dispense medication.

We mention this to Claire, who looks crestfallen.

14 October 2015

The District Nurse came to change the dressing. Pam asked to discuss the injury and its treatment. Not wanting to talk in front of Mum, they looked for a suitable private room but could not find one. They ended up in the managers office.

The District Nurse said: 'our conclusion on first seeing it [the wound] was that it looked like a ligature injury'.

In other words, something had constricted the blood supply, the toe protector being the obvious culprit.

This was said in the office with the manager sitting in the background at her computer.

Carol never uttered a word.

15 October 2015

We were present when a Tissue Viability Nurse, the Head District Nurse, another nurse and Mums GP all crowded into Mums room. The manager found something else to do and delegated Jemima to take notes.

The TVN took the dressing off and washed the toe.

Mum said, "Oh dear I don't know how that happened. I'm not going to lose the toe am I?"

The nurses examined the wound and discussed treatment.

The TVN said the blood supply was OK (good refill’). The toe was warm and there was no infection.

She confirmed that the toe protectors were responsible for the injury the skin, she said, was macerated, soggy and must have stripped when the toe was put into a shoe.

It will heal gradually with proper care - 3x weekly visits by the District Nurse plus weekly photos. She is not to be showered unless a LimbO boot (to be ordered) is in place. This is to avoid infection from the open drain in the shower.

The Head District Nurse dressed the toe, took bloods and gave advice on footwear, socks etc. She raised the footrest on Mums chair; Pam propped the foot up with pillows. Once all the visitors had left, Carol made a reappearance: Pam met her coming out of the lift with Jemima. She said nothing but Jemima, who seems to be acting as her mouthpiece, said: "we've all got to learn from this and we're really sorry that this has happened to Elizabeth".

This looked like a tacit admission of responsibility.

18 October 2015

Nish comes in to take Mum to tea and she says something interesting: "When I came on shift I heard the shocking news", indicating the toe.

The LimbO boot hasnt arrived were truly in a state of limbo!

20 October 2015

We bought a post-op shoe ourselves and took it to Abbeyfield.

Mums door was closed and her feet were resting on the floor.

Iona (a carer) came in and said Mum's toe looked much better.

She said that while the dressing was off they had showered her.

As the LimbO boot hadn't arrived, they were contravening the Tissue Viability Nurses instructions. Showering her over an open drain exposed her to the risk of infection.

The District Nurse's notes were missing and bandages and scissors had been left lying on the table. Jemima later said the notes were in the office. She was careful to say the toe looked pink ("I'm not just saying that"). She said the antibiotics have just been stopped. Carol was in the office as I left but ignored me.

21 October 2015

I visited to bring shower consumables. Mums door was wide open, as it should be. I noted that her feet were on a stool, bandage halfway up her leg; the nurse's notes were retrieved from the office, where Claire told me the toe was infected but successfully controlled with the antibiotics.

This was not what the District Nurse had told us.

23 October 2015

Claire told us (with pride) about last Tuesdays showering.

So Pam laid into her, telling her that the Nurse's instructions were that she should not be showered over an open drain without protection. This seemed to come as a surprise to Claire. But, she said, she was sitting on the commode seat. That's not the point, Pam retorted. She went on: "This shouldn't have happened in the first place should it?" "No", said Claire.

The District Nurse has visited, writing in the diary that she couldnt find any dressings so had to make do with what she brought with her.

Hmm - a nurse who comes to dress a wound but doesnt bring any dressings.

25 October 2015

We learn from a resident that they never see Carol. She is reputed to hide in the office playing on her computer.

29 October 2015

A District Nurse made an unplanned visit last Sunday because the dressing had come off. Her notes contained the intriguing comment that Mum is prone to knocking her toes. How did she know that?  Someone from the care home must have told her. Claire, perhaps.

30 October 2015

I phone the General Manager to ask how the Registered Manager is getting on with a report on the incident that I requested on 16th October.

She had been instructed to undertake a "thorough investigation".

The General Manager got back to me, saying the Report is being posted.

2 November 2015

The Report, when it eventually arrives, is one-third waffle and one-third corporate-speak. Carol repeatedly says she is not a clinician and so cannot speculate on the cause of the injury. She pretends to be unaware that the District Nurses, who can surely be called clinicians, found it was a ligature injury that may have been caused by the toe protector.

The remaining third of the Report is a transparent attempt to shift the blame for the injury onto the District Nurses. Alleging that they gave her wrong advice about the toe protector, she wants them to complete a form every time they visit outlining the treatment they have given and what they instruct/advise.

Getting others to fill in forms and sign disclaimers is an obvious way of avoiding responsibility - the last refuge of the lazy bureaucrat.

I respond by writing to the General Manager, noting that the toe protector packet contains clear instructions. It advises that the tube be kept dry and should be removed overnight.

Carol and her staff completely overlooked this.

3 November 2015

Carol emailed me requesting the names of the staff members who had speculated on the cause of the injury because, "the assumption of how the injury was caused should not have been verbalised".

It seemed an odd thing to say, given that she was usually present when the staff spoke to us.

Theres a hint here that disciplinary action might be taken against the staff concerned.

Carol also complained about the use of the word "manky" she doesnt want her staff using such language when talking to clients.

Unfortunately, I did not get the email because I was in my mother’s room at the time it was sent. The manager knew this she saw me passing her office door as she was writing it. 

As I was leaving, she popped out of her office and asked for a word.

This, 3 weeks after the accident, was the first time she had spoken to me about it.

She asked for the names of the staff but, crucially, did not say what was in the email. She merely assured me that no staff member would get into trouble.

As she already knew (from the duty roster) who the likely staff members were, I gave her the names.

When I got home and saw the email, I sent an angry response, copying it to the General Manager.

Neither of the two managers responded.

9 November 2015

Against all expectations, the toe is well on the way to healing. The nurses have taken the dressings off for good.

I meet Mums chiropodist. He says he was told the toe got caught on a wheelchair. I tell him the nurses believe its a ligature injury that was probably caused by the toe protector. He says he uses such gel protector tubes and has never had a problem with them. But, he adds darkly, even when he gives clear instructions on the use of the tubes, there is no accounting for third party failure to follow them.

17 November 2015

After two weeks with no acknowledgement from the General Manager, I send in a formal Complaint arguing that inadequate communications are at the root of all the problems we have had. I tell Abbeyfield that their Registered Manager likes to stay in the background, where she can be comfortably detached from what goes on, thus allowing her to give tacit approval to what the staff tell us while avoiding responsibility for it.

We want her to step into the foreground and engage directly with us, with visiting professionals and with residents.

Jackie, the General Manager, writes back immediately, promising to appoint an Investigating Officer, who will contact me.

18 November 2015

Carol phones to invite me to a meeting with the Investigating Officer. I tell her its up to him to contact me directly.

So he does introducing himself as Terry. I ask him what the agenda will be and it becomes obvious that he wants to talk exclusively about the injury and the steps they have taken to avoid a repetition.

I inform Terry that the injury is history and we really want to talk about Abbeyfields communications problems.

He doesnt seem to get it.

19 November 2015

We arrive at Abbeyfield, finding Mum returning from a visit to the conservatory where she joined in a 1940s singsong.  This is a very rare excursion for her the visit only took place because Kelly was on duty. Shes the only staff member who takes the trouble to get Mum off her backside and downstairs to musical events such as this or just to sit in the sun in the courtyard. Kelly is the only carer who will sit and spend time chatting to the residents.

We have an hours meeting with Carol and Terry to discuss my Complaint with a view to finding a resolution going forward.

He keeps repeating that he doesnt know exactly whats gone on because hes new in the job, but then lets slip that he started in March, 7 months ago.

Despite my insistence that we should be discussing communications, he is intent on talking about the injury. "Im not a clinician", he says, as a prelude to informing us that there are several different opinions about the cause.

I glance at him and see that one of his shoulders is starting to slope. It seems to be pointing in the direction of the District Nurses.

He repeats the story about getting wrong advice from one of them but is unable to name her. Six weeks ago, when we asked the Head Nurse about it, she said there was no record of any of her nurses giving such advice.

Terry starts outlining the steps they will be taking to force visiting medics to put their instructions and advice in writing. I butt in, telling him that all his manager needs to do is accompany visitors to residents rooms, listen to whats said, and take notes.

I mention a specific instance when a nurse announced her arrival and Carol simply told her to go to Mums room, unaccompanied.

Carol, who hasnt said a single word up to now, suddenly pipes up, saying that particular incident was a one-off. It wont happen again.

Its a barefaced lie. Furious, I tell her about other unaccompanied visits by nurses, dentists, doctors and chiropodists. She lapses into silence again.

With his manager coming under attack, Terry leaps on his white charger and rides to her rescue. She is, he says, highly regarded by other professionals for her proactive approach to management.

We stare mutely at him. The only sound in the room comes from our jaws dropping to the floor.

We cannot imagine how a manager can get away with doing as little management as Carol.

Exasperated, I forcibly change the subject and start talking about poor communications. Terry asks for concrete examples so I repeat the one about the showering incident the one when they failed to follow the Tissue Viability Nurses instructions and gave Mum a shower over an open drain, with the dressing on the toe removed. Jemima, I inform him, was delegated to attend the consultation on 15 October and take notes. I glance at Carol but she doesnt contradict me.

Later, I say, Pam got Jemima to confirm that shed understood all the instructions.

Carol interjects, saying the instructions were passed on but there was no warning about showering over an open drain.

This is either another barefaced lie or Jemima suffered a severe memory lapse.

As another example of poor communications, I relate the tale of the dentists visit, another unaccompanied one. After the treatment, the dentist went in search of someone to instruct on Mums future dental care. Her instructions worked for a while but soon lapsed.

Terry asks if wed mentioned it to anyone. I tell him that yes, we reported that Mums breath stank on several occasions. Clearly her teeth were not being brushed. He scribbles a note in his book.

"And another thing…" Pam is warming up now. She tells the meeting how we once found a couple of tablets in Mums pocket. Shed been handed medication and nobody supervised her. Wed immediately reported it to a senior carer.

Terry looks stunned. They didnt know about this; it hadnt been reported. Carol says nothing.

And that is that. We leave the meeting doubting if anything much will change.

Shortly afterwards, we meet Mums GP, whos come to check up on her toe. "Shes quite a bit older than me", says Mum, "but doctors can carry on working for ever".

21 November 2015

Mum was distressed today complaining that the room isnt hers and that nobody tells her anything. We were pleased to see that Marcella was with her when we arrived, talking gently to her, pointing to the pictures on the wall ("Oh yes, thats me and my husband; those are my boys") but it didnt make any difference to her mood.

She was in the grip of another, parallel reality that would not go away until she went for lunch.

28 February 2016

We decide to tidy up Mums underwear drawers.  There are plenty of bras but none of them belong to her. The one shes wearing isnt one of the sports-style bras we bought her.  Its 5 years since I first complained about missing laundry and Abbeyfield still hasnt sorted the problem.  I send Carol an email.  She says she ordered individual laundry bags but "the wrong ones were sent"

Not her fault then.

29 February 2016

Organisations such as the DWP, HMRC and NHS always send correspondence addressed to Mum, never to me, her Attorney. Since reading such mail is guaranteed to confuse and upset her, Abbeyfield were authorised to withhold such letters and pass them to me. But such a simple task is beyond them she regularly gets official letters delivered to her room.  They even send their own letters those detailing their fees direct to her.  When I complain to Carol about the latest transgression, she says such deliveries happen "without my knowledge".

Not her fault then.

1 March 2016

Now and again we find Mums room pretty chilly, usually because someone has turned down the thermostat.  Its obviously a member of staff who thinks the room too is too hot.  Once again, I complain to Carol.  Once again, she suggests putting up a notice asking staff not to adjust the thermostat "without consulting a senior"

Not her fault then.

23 March 2016

Mum worries deeply about things she sees on the News. At the moment its the migrant crisis in Europe.  She says, in her considerate manner of old: "I'd help if I could but I've only got one bed".

28 May 2016

Mum was noticeably depressed when Nish, one of the staff, escorted her back to her room after lunch. She said she felt ill - something she'd eaten perhaps - others were ill, too. When questioned she said she was physically OK. Then she said she was worried I might catch it and we realised she was probably talking about the Zika virus, which is prominent on TV at the moment. We sought out the staff to ask if they had observed her distress. But they seemed to know nothing. Hardly surprising, we thought - they don't engage with residents unless they have to. We have only once arrived on a visit to find a member of staff - Kelly - sitting in her room chatting to her. At all other times, when we want to find a carer we go to the dining room where there are sure to be 2 or 3 of them chatting over cups of tea. They only come in, Mum says, "when they want to do something."

Caring is surely not meant to be like this.

26 July 2016

Mums 101st went off like a dream. We went to the Clevedon again and had an afternoon tea. "This is lovely," she declared. "Were all together here. But theres one missing. Now wheres that boy?"

She spoke incessantly about the economic situation.  As she was cutting the cake she remarked, "the young ones cant get jobs so perhaps we shouldnt be eating this".

Back at Abbeyfield a large cardboard box containing a bowl of M&S flowers had arrived.  There was no greeting and no indication of who had sent it.

But I knew: it was someone in a hurry, someone who is not a detail person: her other son, my Invisible sibling.

21 Nov 2016

Mums GP organised an assessment by the Community Mental Health Team because there have been recent incidents involving verbal abuse of staff and residents. The GP thought she might have had a TIA. When the Team leader phoned to confirm the appointment, I asked if the visiting nurse was dementia-trained. "Yes, we all are," came the reassuring reply.

Donna, the Community Mental Health nurse, arrived and started the interview by asking Mum where she thought she was. Then she was asked how she felt in herself, if she was ever angry and if she ever heard voices in her head.

In between answers, Mum would rabbit on about houses, spare rooms and lodgers. She could, she said, put people up in the adjoining spare bedroom: she indicated the bathroom.

At this, Donna, the trained dementia nurse, crossed to the bathroom, flung the door open and declared loudly that it was only a bathroom, nothing else.

Mum was momentarily confused but quickly found a way to account for the apparent contradiction: the bed, she said, was in a room next to the bathroom.

At this, Donna recommended putting a notice on the bathroom door stating that it is just that, a bathroom.

Experience has taught us that the best way of relating to Mum is to try and enter her world, her reality. There is little point in contradicting her beliefs, reasoning with her or otherwise trying to coax her into the real world. 

If Donna has really received training in the care of dementia patients, that training is, without a doubt, defective.

23 December 2016

My brother arrives with his wife and son to take Mum out to Betty’s. She is keen to go out. "I don’t like sitting doing nothing, sitting on my own," she tells them. While getting her ready, they spend a lot of time urgently looking for the Xmas card they sent her. My nephew picks up the card we gave her. "Stewart’s left a very heart-warming card," he reports. "Says ‘much love'." He sniggers. Then, observing his father's cack-handedness at dealing with his grandmother: " You’re not very good at this are you?"

1 February 2017

Hooray! Carol has left for another job.

The staff look as if a load has lifted from their shoulders. 

Eena, the new manager, seems much more hands-on.

Were told that she even drops in on each resident every morning.

1 March 2017

I make one of our regular calls to ask how Mum is.

Eena answers. "Just a minute," she says, "Ill find out for you."

So, no change then.

24 April 2017

A new carer, possibly agency, appeared today. Around 3pm we overhead a conversation with a regular senior carer: "What should I do now?" asked the newcomer. "Theres not much to do now until 4 oclock. You might as well take it easy."

We wonder why she didn’t suggest introducing herself to the residents and having a chat with them. Mum, for example, would welcome human contact.

27 April 2017

Mum has developed a chest infection. After her near-death experience in 2014, we are on red alert.

I learned about the infection by chance when her new GP, Dr S, from the Ilkley Moor surgery, phoned me to introduce himself. "What can I do for you?" he enquired. This was such a novel experience that I cheekily said: "You tell me; it was you who phoned me".

He had not examined Mum himself that had been done by Jan, the Community Matron, who had reported a crackle on her left lung.

Later, when I called Abbeyfield to ask how Mum was, I was told her chest was clear the Matron had told them so; she had prescribed antibiotics, but only as a precautionary measure. 

Giving out a contradictory story reflects badly on the staff. "It makes us look stupid", says Jo.

Needing to find out the truth, I asked Dr S to visit Mum to examine her himself. When he did so, he confirmed that she had a chest infection but did not offer an explanation for the conflicting diagnoses. 

What he did say, though, was that his Community Matron is one of the best nurses around.

Hmm such an unsolicited, defensive remark suggested that he knew about the conflicting diagnoses.  So why didnt he admit it and tell us what went wrong?

30 April 2017

Were told that lots of Abbeyfield residents and staff have colds.

Theres one of those anti-bacterial hand spray machines at the entrance to the unit. But its been empty for some time. Clearly nobody, including the staff, bothers much about infection control.

Its mid-afternoon when we arrive. Three carers are taking it easy in Reception. The telly in Mums room is blank and she is sitting there polishing and repolishing her glasses. She looks unwell and is rather subdued. Theres a cup of cold tea on her table. She has taken only a couple of sips before forgetting to drink. She doesnt know she should be keeping herself hydrated. We have asked the staff to make sure she drinks enough, but right now theyre on their tea break.

3 May 2017

The hand spray machine is still empty.

Another doctor came and examined Mum, saying she still has a crackle in her chest. She is not unduly concerned, however.

Mum is very agitated at the moment she obsessively cleans and cleans her glasses. If theyre out of reach she folds and folds a paper napkin. Shes bored. She lacks stimulation.

"This is not the place for me," she tells us. "Im going home tomorrow".

8 May 2017

The hand spray machine was refilled 3 days ago.  Great!  But Mum has already caught the cold bug thats raging at Abbeyfield.  Jan, the Community Matron, examined her today and told us her chest infection is bad. Its the point at which, she seemed to suggest, Mum would usually be admitted to hospital. If she stays at Abbeyfield, it could go either way. We have already decided to keep Mum out of Airedale Hospital, where she had such an awful time in 2014. Were going down the palliative care route. 

I hurry to her bedside, finding her coughing and hot. She’s watching Nanny McPhee through half-closed eyes. "Its about a man who loses his wife and his children are very bad," she informs me. Then, "I dont know why Im ill. Its not winter yet. I need to get better because Ive work to do."

Two carers come in and shoo us out of the room while they turn and change her. Later, the District Nurse comes and checks her for bedsores. An air mattress is being ordered. We watch Margaret, a carer who tells Mum she hails from Glasgow, gently feed soup to her patient. "Thank you," says Mum.

Clearly, the palliative care processes are getting into gear. This is a rare insight into how care is delivered (as management speak would describe it) to the bedside.

During the night, she gets turned every two hours to prevent bedsores developing. Jan always apologises for waking her up. "Thats all right," says Mum, "You have to do your job, I don't mind. Im very grateful."

We are enormously impressed with the skill, kindness and compassion shown by all the professionals involved.

9 May 2017

Dr S visits to check on his patient. Shes brighter today, though her oxygen saturation is still perilously low a mere 86%. She tells him she needs to get better so she can look after "my boys."

"Oh but they can look after themselves theyre grown men, married," he contradicts.

Mum looks confused for a moment. Then: "I must look after them," she persists. "I dont want them to get girls in the family way."

"But theyre married men.". The good doctor doesnt realise shes back in the 1920s talking about her younger brothers as the eldest child, she took care of them.

Dr S may be a GP with lots of dementia patients on his books but he clearly has a lot to learn about how to interact with them.

10 May 2017

Eileen, a carer, reports that Mum said to her, "Im not ready to die yet."

Yet when Pam announces, "We've come to see you, Mum", she responds with, "Well, I'm always here in this chair. This is my home now."

This is a big change, the first time she has acknowledged that shes at Abbeyfield permanently, an acceptance that she might not be able to go home. 

16 May 2017

Mum told the carers this morning, "I dont want to get up." So they left her in bed and were turning her when we arrived at 10am. She spent the rest of the day in bed, dozing. Occasionally she would wake and take a sip of juice. When Dr S visited he asked her if she was comfortable and she replied, "reasonable."

Mum never complains or moans about her lot.

All she says is, "Im ill."

Today she lay in bed for at least 7 hours, during which time nobody came to turn her.

I challenge Eena about this, telling her standard NHS practice is to turn every 2 hours. But, she says, air mattresses mean this is not necessary. In any case, she goes on, waking someone every 2 hours makes them very tired. Rather that than get bed sores, I say. And, I point out, Mum hasnt got a working air mattress yet.

Diane, the District Nurse visited. She confirmed that 2 hours is the required schedule - no ifs and buts. Jo made up a chart for recording each turn event. Every 2 hours day and night, it proclaimed. But underneath was still written the old schedule 2 hours in the day and 4 hours at night.

Around tea-time we sit and wait for someone to come and turn Mum. We wait. And we wait. After an interval of 3 1/2 hours, Claire pops her head in. I challenge her about the delay and mention the District Nurses instruction. She insists that 4 hours is OK; to do it more frequently makes the person tired.

17 May 2017

I look for the chart that records when Mum got turned during the night. Its not in her room. Claire has decided to hide the evidence. Crafty as a bag of monkeys!

I complain to Eena and she gets a new chart drawn up. This one has a list of fixed times for turning Mum every 2 hours. Lets see how they get on with it.

Mum is mostly oblivious to all this stuff going on around her.

Now and again she wakes and gazes blearily around her. "Im not finished yet," she announces.

20 May 2017

Despite being turned every 2 3 hours, Mum gets red marks on her pressure areas. What would help is a working Airflow mattress. She does have one, delivered over a week ago. But theres no pump to keep the air circulating. The District Nurse service ordered both but the pump never arrived. We keep asking where it is but they dont seem that bothered about chasing it.

Postcript:

The pump arrived 3 days later.

"I didnt ask for this. I hope I get better," says Mum.

21 May 2017

In spending entire days (and some nights) at Abbeyfield, we see that the hands-on staff really are phenomenally caring and hard working. Even during the night, the emergency buzzers go off at irregular intervals. There are patients to turn, patients to toilet, patients to bedbath and residents to feed. All accomplished in a gentle, friendly, considerate manner. Theres washing to launder, ironing to do, food to prepare, telephones to answer and clinicians to deal with. All accomplished with good humour, efficiency and compassion. Its a wonder to behold.

"Thank you," says Mum, ever appreciative.

22 May 2017

An Oops day

When we arrive to see Mum early in the morning, we become aware of intense activity in the room opposite. The resident, a man who has been there for a week on a trial residency, has gone. Eena is hurriedly stuffing his belongings into a plastic bag. A man stands by to operate an industrial carpet cleaner. By midday, a new (female) resident is in place. We learn later that Abbeyfield had double-booked the room and had to hastily evict the poor man. Oops.

In the afternoon, we find a tube of a prescription barrier cream on Mums dressing table. Thing is, it has someone elses name on it.

Oops.

31 May 2017

The District Nurse sent across a pair of crash mats to put on the floor beside Mums bed when theres no carer in attendance. They are mainly used for agitated sleepers who move around in bed a lot. We had a laugh and a snigger about it because Mum scarcely ruffles the bedsheets when she sleeps: the provision of crash mats seemed like a piece of unnecessary NHS box ticking.

Well, a few hours later, our contempt for the crash mats nearly came back to bite us. Iona reported that she found Mum trying to get out of bed to pay a call.

Mum is extremely weak, having scarcely eaten for more than a month, is bedbound and sleeps most of the time. Yet here she is, her indomitable life force still intact, struggling to maintain her dignity while protecting the Abbeyfield bedding from soiling.

25 June 2017

On the unintended consequences of laxatives

Having been bedbound for some 6 weeks, Dr S decided on drastic action to encourage movement in Mums nether regions. First suppositories, then prodigious quantities of laxatives, were prescribed. Taking a double dose daily soon had the desired result. But getting her out of bed onto the commode using a hoist took its toll on her strength. And there were other side effects, too. This mornings records show she had prolonged diarrhoea. At the same time, she was drinking very little - a few sips of juice or tea every now and then. Observing that Mum was bright and chirpy, the staff dressed her and helped her into a wheelchair. Suddenly she became unresponsive and started fitting.

This is a known side effect of severe dehydration.

She was hurriedly hoisted back into bed and we, the relatives, were called.

Remarkably, she recovered and was soon back to her old, chatty self.

26 June 2017

Dr S has been called to check Mum out. He asks Pam if she was present when the seizures happened yesterday.

Kent, the member of staff assigned to accompany the doctor, overhears and remarks, "Oh I didn't know" about the seizures.

The good doctor looks surprised.

One might expect such a significant incident to be mentioned at the shift changeover.

But if not, it would surely have been written up in Mum's Care Plan.

Wouldn't it?

And Kent would have read it there. Wouldn't she?

Hmm. Such certainties never seem to apply at Abbeyfield.

27 June 2017

The eyes have it or maybe not

Mum has sore eyes she is constantly rubbing. Dr S prescribed medicated wipes, moisturising cream and eyedrops. While the eyedropper bottle, as the only 'proper' medication, was put in the medicine trolley, the tube of cream appeared on her bedside table and the wipes vanished into thin air. The eyedrops were administered 4x daily, as prescribed. But the cream was a different matter: no-one seemed to know what it was for, except Kay, who thought it was for applying to Mums arse. She hadn't heard of the wipes until I told her and she went off to find them.

Mum's Care Plan would surely have mentioned these medications.

Wouldnt it?

So why werent the staff aware of them, we wonder?

Later in the morning, Gabriel, a lovely man, an agency-supplied carer on his first assignment to Abbeyfield, comes in with a lunch menu request form. Would Mum like beef stroganoff or fried fish, he enquires.

Mum eats very little and has not taken solid food for several weeks.

I feel embarrassed for Gabriel. I suspect he hasn't been briefed on her needs. Either that or he hasn't read her Care Plan.

10 July 2017

Our DIY therapist hunt

From being on the cusp of death a few weeks ago, Mum is back to her old self, with one exception.

She cant get out of bed because of her weakened condition shes lost several stones and can scarcely weight bear.

The more adventurous members of staff can usually get her out of bed and into the wheelchair but getting her back into bed requires the use of the hoist. This is tricky because an assessment is needed to ensure the correct size of sling is used.

Such mobility assessments are usually done at Abbeyfield by occupational therapists sent by Social Services. However, Bradford Council have refused to provide one, citing government cutbacks.

Abbeyfield have plans to employ their own occupational therapist across the groups homes. But not yet. Jackie Bradfield, the CEO, refused to book a private occupational therapist on a one-off basis and told me to get one myself.

Thanks Abbeyfield! Thanks Bradford Council!

When Dr S heard about the problem, he put in a referral to the NHSs Community Occupational Therapy Team. But the good doctor was somewhat pissed off, if that is the correct term, when he was told they would not be attending.

This is because care and nursing homes are required to assess a residents mobility themselves and to provide the necessary equipment.

Abbeyfield should not be asking me, a residents representative, to organise a mobility assessment. That is part of their service, a service that has cost my mother more than £160,000 over the years.  For comparison, a mobility assessment costs £160.

I sent an email to the CEO, seeking clarification.

Jackie Bradfield did not reply, but passed my enquiry to Nicola, the Head of Care Services. The latter told me not to bother the CEO, advising, "As you will appreciate Jackie has a high number of strategic matters to deal with".

Nicola went on to inform me that Abbeyfield would, after all, pay for my mothers mobility assessment. On condition that I used their own OT. 

But poor Nicola hadnt been keeping her ear to the ground she wasnt aware that Eena had already given me approval to engage my own OT and confirmed that Abbeyfield would pay!

12 July 2017

Game, Set and Cash

Mum was watching the end of Andy Murray's tennis match. The spectators were clapping. She did likewise.

"Oh I've won. I've won some money. How much is it?  Ive never won anything before.  I'll share it with you," she said, happily.

19 July 2017

Twiddlemuff

In the current edition of the Newsletter is a report on the Twiddlemuff, a knitted hand muff with lots of bits and bobs that are supposed to stimulate the minds of dementia sufferers. Theres a photo of Andrew, one of the residents, demonstrating it.

Thing is, Andrew doesnt have dementia.

21 July 2017

The Invisible sibling visits

My Invisible sibling (N) announced a few days ago that he and his wife (J) would be visiting Mum just before her 102nd birthday. Although he was told 10 weeks ago that she was ill, he hasnt asked after her health since. He had no idea that she had been close to death. So I hastily emailed him to say they would not be able to take her out to lunch, as usual, because she was too weak.

Never one to accept an instruction from his brother, he phoned Eena to ask if they could take his mother to Betty's CafĂ©.  He was told "No".

We piece together what went on from what the staff tell us. It goes like this:

J: "Mum is in bed. Well need to ask has she had an infection or something."

She speaks to Claire, asking if they can take Mum out for a walk.

Claire: "No, shes not weight bearing. Shes been really ill."

J: "I know."

Later, N goes to the office to talk to Claire.

He reports back to J: "Apparently she had a chest infection."

They go into town on their own for a couple of hours.

On their return, Mum starts a lecture about the Royal family.

Bored, N shows her a photograph, declaiming loudly: "This is your son, Stewart. Hes mad. Hes bonkers."

Mum: "Well I never."

21 September 2017

CHC

The NHS called a meeting to assess Mum for CHC (Continuing Health Care) funding. A nurse presided. A social worker was also there. It was done very efficiently and we were told the likely outcome no funding.

Heres the thing, though: wed already attended an identical assessment 2 months earlier. That was when the Community Staff Nurse asked Mum if she was happy for her personal data to be seen by others. We went through the same questions on the same forms. It seemed like a waste of everybodys time.

1 October 2017

Mum had a dressing on her shin today. Claire told me shed bashed it on the hoist as she was being lifted. Its a problem, she declared, because the hoist has to approach her chair from the front. Her long legs are liable to hit the main strut. They use a pillow to stop them hitting the hoist but, she said, it can be difficult to keep it in place. She would get the procedure modified to clarify the technique of using a pillow as padding.

Mum is 5ft 8in and doesnt have particularly long legs. It sounded like an excuse so I observed other members of staff using the hoist.

I saw that they didnt use a pillow. As Mums legs lifted off the floor, one carer kept her legs out of harms way while the other controlled the hoist and, as soon as she could, swung the sling away from the metal strut that had caused the previous wound.

It was clear that the shin injury had been caused by someone not paying attention to what Mums legs were doing when they lifted off the floor.

1 November 2017

The wonderful Dr S, Mums GP for the past year, has left. Unique among doctors these days, he always had more than enough time to sit and chat with his patients and afterwards, to discuss matters with relatives. He would pop in to see her just to say hello.

Mum: "Who are you? Are you trying to sell me something?"

Dr S: "Im your doctor."

Mum: "Oh, I know youre not a doctor. Youre a door-to-door salesman. I dont need anything just now."

Later, he asked if she was religious.

"We..ell," she said, "I might be. At my age you have to hedge your bets."

28 December 2017

Charlotte tells us that my Invisible brother visited and stayed for an hour. She heard him shouting repeatedly at her: "What’s going on? What’s going on?"  When she went to investigate he said, “it’s only me”.

Mum was upset for quite a while afterwards.

5 January 2018

Normal NHS service resumes

Mum has had a cough for a couple of weeks. Last Xmas Eve the home asked her GP to visit. 15 hours after the request, at 4am on Xmas morning, an out-of-hours doctor turned up. He prescribed antibiotics, "as a precaution".  This seems to be code for: I havent got a clue but Ill cover my arse with a prescription.

12 days later, Mum still had a cough, so her GP (the new one) was asked to visit. Instead, she sent Jan, the Community Matron.

Matron listened to her chest and prescribed antibiotics, a second course, "as a precaution".

She must have forgotten that the basis of Mums care is non-intervention her medical notes clearly state that she is to get no more than a single course of antibiotics for a chest infection.

I was contacted by the Abbeyfield manager and told my consent was needed for the treatment.

So I phoned the practice but couldnt speak to Mums GP because she wasnt at work that day (she works just 2 days a week).

Another doctor, Dr C, was asked to call me.

She didnt but instead phoned the home manager and gave her the go ahead to commence treatment.

Strictly speaking, my consent to the treatment was not necessary: doctors can prescribe treatment if they believe that it is in the patients best interests.

But NHS and GMC guidelines state that clinicians must consult with a patients relatives.  

Mums doctors have always ignored the guideline.

1 February 2018

The aftermath

3 days after prescribing the controversial antibiotics, Dr C examined Mum and found she didnt need them after all.

The course was cut short.

At a meeting with Dr Senior, Mums GP, I mentioned the presumption against administering a second course of antibiotics and said we expected to be consulted about treatment for serious conditions like chest infections.

Somewhat brusquely, the GP said a chest infection is a minor ailment. They dont, she said, have time to consult relatives about such things.

I repeated my expectation that we wanted to be consulted but received no assurance.

It seemed to me that as soon as the good Dr S left the practice, his successors chose to ignore the treatment plan (Care Plan) we had agreed with him.

Instead, they substituted a Care Plan of their own without bothering to consult us.

This is in contravention of NHS and GMC guidelines.

12 March 2018

Mum was in a good mood when she went on an outing to Millstones, a local venue that regularly puts on song and dance events. Happily jiving to the music, she remarked to her neighbour, "Ive not been drinking, you know".

5 April 2018

Kent keeps snakes and sometimes shows them to the residents. Mum was shown a small constrictor. She took hold of its tail and said, "How do you do? I’m so pleased to meet you".

29 May 2018

When Pam visited Mum said, "are you here to congratulate me on qualifying as a doctor?"

30 June 2018

Falling for the health and safety men

At the start of the 2018 heatwave, short wire straps appeared on Mums window. These restricted the opening to a mere 2 inches. Its to stop residents falling out of the window. This indiscriminate HSE rule takes no account of the fact that Mum, like plenty of others at Abbeyfield, can get nowhere near the window because shes wheelchair-bound.

Since Abbeyfields management hadnt thought of providing electric fans in lieu of a functioning window, I went out and bought a nice-looking chrome-plated model from Dunelm. It lasted 2 weeks before packing up.

10 July 2018

I handed Mum a printed poem, Oh to be in England by Robert Browning. She remembered it from her teaching days and recited it with gusto, with the appropriate rhythm. She recognised the rhymes and fully understood the meaning of the piece.

15 July 2018

One afternoon, Fenella, one of the activities organisers, came bouncing into Mums room. She was pleased with herself for 'graduating' in dementia care, after doing a course for 2 days a month. She does weekly sessions for the residents. I was fascinated to hear that Mum can do the games, including recognising animals from sounds and pictures and identifying historical times from sounds and the smells of baking.

26 July 2018

Mums 103rd birthday party went well. She was relaxed, smiling for photos and for a presentation by Jackie Bradfield. The outgoing CEO crouched in front of Mums wheelchair and handed her a large bunch of flowers.  Mum said, "there are only 3 people in this war: the English the Welsh and the Scots and we won."  Eenas boisterous children entranced her. With some assistance, she blew out the candles on the cake. She said, "Im over 100. Youll be that age soon".

23 August 2018

We are pleased to hear that Fenella regularly takes Mum for a push around town. When shes ready to return, she calls for assistance to get the wheelchair back up the steep road to Abbeyfield.

I met them one day as they came in through Reception. Mum was plagued with dark thoughts, thinking there was a war in progress. "How are we going to get back home?" she asked. "We might get blown up. I'd better escape from here before I burn to death".

I was unable to distract her from the constant torrent of doom but she gradually diverted herself onto other, more congenial, topics that eventually made her laugh.

By the time I left, she was quietly watching TV.

30 Aug 2018

Mum has a nasty-sounding cough and were concerned. Pam asks her how she feels. "Alright", she says. Then, with a long face: "I think I'll have to start putting it on a bit if I want to stay here longer".

6 Sept 2018

Dr C visited to examine Mum because she has been on antibiotics for the cough.

Although the care staff say shes a bit too businesslike, we find her approachable, considerate and informative. She went over to examine her patient, while continuing to talk to us. Then she stopped and rebuked herself for talking over Mum. After the examination she told us Mums lungs sound fine. There are, she said, some crackles but these are common in patients who are not mobile. Her temperature and SATS are normal, she said. No other doctor has ever given us so much information.

We are all guilty of talking over Mum. She can seldom follow discussions so it seems easiest to simply talk over her, hoping she doesnt notice.

But she does notice. One day, while Pam was cutting her nails, Jacqui, one of the cleaning staff, came in to talk to us.

"Don't talk while you're cutting my nails", she rebuked.

2 Oct 2018

The dressing table in Mums room has disappeared. A broad, blank, grubby wall confronts the visitor entering her room. Its hard to say if she notices the change or feels that the room does not belong to her. She did, though, remark: "I dont know whos sleeping in that bed. I saw a lady there one day. I think she has friends here."

As nobody had bothered to consult us about the dressing table, we asked Eena about it and learned that its removal gives the staff the space they need to use the hoist in a safe manner, in a way that avoids bashing her legs.

It sounded like a good explanation, but we knew (see 1st October 2017) that some staff members could manage to use the hoist perfectly safely as long as they were careful. However, we could see that removing the dressing table would give them an extra safety margin.

We just wish wed been consulted about it.

5 Nov 2018

In her 5 years residency at Abbeyfield, Mums room has been given no attention at all not a lick of paint, or a spring clean, nothing. It did get a new carpet 4 years ago but we bought that. Management worked hard to come up with excuses for not doing any redecoration. "Toxic paint" was one of them - Mum would be required to move into another room for at least 2 days to allow the smell of the paint to dissipate.  This was impractical, not least because there are seldom any spare rooms for a resident to move into temporarily.

Then, last week, Eena announced that they could paint the room with a new-fangled odourless paint, meaning Mum would not need to vacate it for longer than a few hours. I asked for a pale green paint and offered to take Mum out for the day, proposing Wednesday. Eena said she would liaise with the decorator and promised to get back to me.

8 Nov 2018

She didnt get back to me. So I called her. She told us the room would be done on Thursday.

When we arrived the decorator was slapping dark green paint on the wall.  It was a standard Dulux emulsion, not odourless at all. He said nobody had told him we wanted a paler colour. But he mixed it with magnolia to lighten it. The result wasn't quite what we'd envisaged but is still quite acceptable.

19 Nov 2018

Claire phoned in the evening saying Mum was angry and paranoid and would we come over and try to calm her down. This was serious Abbeyfield had never before made such a request.

I went over at once. "You'll be all right in here, as long as you don't try to get out," she said when I arrived.  "Ive been trying to escape but they wont let me go."

Slowly, she calmed down and once she got engrossed in the telly, I tiptoed away.

20 Nov 2018

Mum is fine today. Abbeyfield tell us they will ask her GP to prescribe Loprazolam to help with her anxiety attacks.  I ask Claire what they will do if she refuses to take the tablet. She says they will watch her carefully and, before an attack gets bad, while she's still cooperative, ask her to take a tablet.

It sounds like an optimistic strategy.

10 Dec 2018

We spend over an hour with Claire reviewing the current edition of Mums Care Plan.

She tells us Mum was badly agitated last week. She refused to take the Loprazolam tablet. She probably thought they were trying to poison her.

The following day they managed to get her to take a tablet. It was the minimum 1mg dose. But it was still too much and she slept for 12 hours.  The recommended dose for the elderly is actually 0.5mg.  Yet Loprazolam is only available in 1mg tablets.  Abbeyfield will have to ask their pharmacist to cut the tablets in half. Odd, that.

11 Dec 2018

Claire phoned to tell us my Invisible sibling had just turned up, on his own, for his Xmas visit. Later, she told us, he was on his phone all the time his mother was talking to him.  So she, Claire, marched in and suggested he take her to a singing event in another part of the building.  He replied saying, "I don't sing", but did take the hint, wheeling his mother along to the event.  There he abandoned her and vanished.

10 March 2019

Mum has been at Abbeyfield for almost 6 years. No manager has ever, in all that time, done what is commonplace these days in establishments, such as restaurants that offer a service, and asked: "Is everything all right for you and your Mum?" 

Although the current crop of management and staff are perfectly happy to talk to us, there is no simple conduit for giving them feedback, leading us to assume that they arent really interested in what relatives have to say.

When we make suggestions we have to make an appointment with Eena or her deputy, then try to make it look as if we are not making a complaint.

Today we found the top shelf of Mums wardrobe was stuffed with boxes of dressings, put there by the District Nurses.

On the far side of the room, with its castored feet tucked under the bed, was the shared hoist, unpleasantly obtrusive.  Next to it stood Mum's wheelchair, blocking access to a chest of drawers. It could easily have been parked in the bathroom.

The afternoon tea trolley came round at 3pm. A newcomer, a pleasant young man was in charge of it. He had no uniform or name tag.  And no idea that the tea is supposed to be delivered cooled down, to avoid any risk of the scalding that happened in 2014.

Its in Mum's Care Plan. We wonder if anyone bothers to read it.

On departure we collected at least a dozen tea-stained copies of Hello magazine that were strewn around the room and took them away.

Why have I mentioned all this?

Well, when staff get complacent they are apt to be lazy. It's human nature. Managements job is to keep people on their toes. One of the residents is a peer of the realm, Baroness Lockwood. She has rather a loud voice. It is hard to imagine her room being treated like Mum's, a dumping ground for hoists, wheelchairs, medical supplies and old magazines.

25 March 2019

When we visited, we found Mum sitting in her wheelchair in the lounge, all alone. She was staring, looking baffled, at an interactive table projector – one of those you slap or stroke to reveal interesting shapes, scenes and sounds.

When someone is there to control the machine and show her what to do, she enjoys it immensely.

26 March 2019

Mum has been sick and was prescribed Gaviscon and Lanzoprazole on 14 March. Nearly two weeks later, neither has been administered. We get a different story whenever we ask about them.

Today, Claire admitted the medication had been put in the wrong box, the one for recurrent medications.

In an effort to cover herself, she claimed that both meds are prescribed to relieve sickness; Mum is only to get them when she feels sick; that is why they have not yet been administered.

Mum has been sick several times but, as one might expect, has not been able to tell anyone in advance.

I phoned the surgery for the true facts. I was told that the Gaviscon is to be administered when she feels sick while the Lanzoprazole is a regular daily dose lasting 2 weeks. 

On the subject of administrative competence, we learned that Abbeyfield is currently involved in an upsetting incident concerning a resident who has just died. The local hospital, where she died, failed to notify anyone of the death. When they were eventually told, Abbeyfield failed to notify the residents friend, who had Power of Attorney and was her de facto next of kin.

Oops!

30 March 2019

I ask how Mum is tolerating the Gaviscon and Lanzoprazole she was prescribed. Kay checks the Medicines Book but theres no record of any medication being prescribed or administered. Nothing.

7 April 2019

Claire told me Mum has not been given any medication because there have been no further sickness episodes.

Then she said she had been given Lanzoprazole for 7 days.

Hmm. The prescription said 14 days. And it isnt recorded in the Medicines Book.

11 April 2019

Pam went to Abbeyfield to take Mum to their Easter Fayre, having forewarned the staff. Theyd got her dressed and put her in the wheelchair and then left her, on her own, in the small reception area. When Pam found her she was looking bereft and weeping, saying: "theyve left me here to die".

She perked up when taken down to the sunny courtyard where the Fayre was in progress.

Why am I mentioning this?

Well, we think the caring at Abbeyfield is good but, on occasions, can be a bit perfunctory.

The other day Pam observed a carer bringing Mum her lunch. She entered the room with the tray, plonked it down in front of Mum, then left without saying a single word.

Only one member of staff has, to our knowledge, ever taken the time to sit and chat to residents (see 19 November 2015). And she, Kelly, was openly criticised by the others for wasting time and not getting on with it'.

We think some staff dont quite understand that caring for a resident, particularly one with dementia, should be about more than toileting, dressing and feeding.

The whole person, not just the physical body, should be attended to.

28 April 2019

While we were visiting, Nish came in with her medication, in a tumbler. And left it there, on her table, presumably hoping that she would take it.

She didnt.

22 June 2019

Its just her dementia

Today one of the residents, a tiny, frail lady, was in great distress. She was crying and shouting, "Help me, help me". The noise could be heard all over the Residential Unit. No members of staff were to be seen. Pam, on her way to see Mum, stopped to hold her hand and comfort her. There was a strong smell she had soiled herself, a likely cause of her anguish. A visitor came by and asked why there were no carers about. After a while, Pam let go of her hand and went to find someone. Just then, Nish appeared. 

Now we have always found Nish to be rather laid back, a bit distant and not very informative. If we were to ask a question about Mum Nish would not know the answer: he never seems to know whats in the Care Plan or the Daily Diary.

Anyway, Pam told Nish how upset the resident was and asked for something to be done. Nish responded with irritation, saying, "Its just her dementia", as though there was nothing to be done. He had almost certainly heard the commotion and had chosen to ignore it. The poor lady could carry on screaming the place down as far as Nish was concerned it was just one of those things.

Pam told Nish about the soiling and only then was action taken - an assistant was summoned and the lady wheeled away to be cleaned up.

23 June 2019

To be fair to Abbeyfield, we have noticed a significant policy change over the years. Back in 2013 there were no residents with dementia - they were generally excluded. Mum was taken on because she was perfectly manageable, having demonstrated this during her respite sessions. Six years on, about a quarter of residents have some degree of dementia. A similar number have conditions that require constant monitoring, including regular night-time turning to avoid bedsores, and the use of equipment such as hoists. What the staff have to do cant be far removed from full-on nursing care. It's to the great credit of Abbeyfield and its hard-working staff that nearly all high dependency residents have been allowed to remain in their familiar rooms and havent been shipped off to nursing homes.

28 Sept 2019

Most years, Mum goes to an over-90s party organised by a local charity. They put on a buffet and bring on musicians and comedians and singing and dancing. Space is limited, however, and you have to get your booking in early. One year, Abbeyfield forgot to make a booking and she missed out. This year we made sure Tina, the Activities Organiser, knew about the event and kept checking that shed made the bookings. But 3 weeks before the party she told us the organisers had cancelled it for people from care homes due to their excessive numbers. They wanted to prioritise elderly folk who lived on their own, a perfectly laudable strategy, we thought.  Except that it wasnt true.  The charity told me they allocated space on a first-come-first-served basis and had plenty of care home residents going.  We drew the obvious conclusion that Tina hadnt got her act together in time but had decided to cover it up and invent a plausible reason for not booking Mum to the party.

1 Nov 2019

The Registered Manager of a care home is the official point of contact for residents as well as for the relatives of residents who cannot speak for themselves.  Since her arrival, Eena has been conspicuous by her absence from the shop window. We have not seen her for months. As she doesnt communicate by email, we have no means of getting updates or of making complaints or suggestions.  To do these things, we have to talk to whoever happens to be on duty at the time of our visits. And there is no guarantee that anything we say will be passed on to other members of staff.  Higher management doesnt seem to understand the importance of communicating with the people who pay their salaries. Today we learned that Eena has been off sick for a month and is now away on a fortnights holiday. Nobody upstairs thought it worth telling us.

19 Nov 2019

Good news!  At long last, a replacement Activities Coordinator has been appointed.  Holly wasted no time in getting to know her residents needs, their abilities and disabilities and their personalities.  When we talked to her and we have already had two lengthy chats she already knew that Mum's eyesight is failing and had a few bright ideas for getting round the problem while taking her mind for walks.

2 Dec 2019

We get Mum ready to go out for a fish and chip lunch. "I'm not so good at walking," she says. Then she starts tittering. "When you're getting old you have to laugh."

Claire comes in with the hoist. She has to get really close to put the slings in position. "One old face looking at another," says Mum. 

8 Dec 2019

Mum has been a bit agitated this week.  When she's like this she will blether  endlessly about subjects ranging from war with Russia to the problems of Europe, from illness in the family to the terrible food they serve up here.

At its rare worst, she can shout at people.  She sometimes does it in the Dining Room, while sitting, waiting, waiting, waiting for food to be served, bursting out angrily that the other diners are being neglected.

Its a sign of frustration borne out of not knowing what's happening, of not having her voice heard and of having a mind that is full of contradictory fragments of knowledge that dont make much sense of the world.

As I mentioned, shes been a bit agitated this week. And theres an obvious cause. When her telly broke it was taken away and replaced with, well, nothing. For several days, Mum had to stare at a blank space where the telly had been. Anyone forced to sit in front of an empty space all day would get frustrated. For compensation, someone plonked a portable CD player beside her chair. Its musical prattle irritated her even more.

Fitz, when she came on shift, was appalled at the thoughtlessness of her fellow carers. She found an unwanted, but rather wonky, TV and installed it. It didnt work very well because the TV removal man had also taken the aerial cable and the remote control. But it was better than nothing.

I asked Eena about the telly. They did not have a replacement, she said. I would have to buy a new one myself. So that is what I did, whilst reflecting that the cost was 1/1000th of the sum my mother has paid Abbeyfield over the 6 years she has lived there.

17 Dec 2019

"I've had an illness, I haven't been well. Perhaps that's why I'm speaking so silly. Can't be my house. Where is my house then? Something very fishy. I'm onto fish now. Maybe I'm going to be a fish. I can't swim. How can I stay in a fish place if I can't swim?  They'd put me out immediately. I'd need to be taught to swim then. There's something wrong with my head in there. I'm not thinking in the right things. I've been ill. I've lost my memory. Maybe I've lost the old brain in here. It's up here somewhere. I can't live properly if I haven't got a brain. I'm just like an animal but even animals have got brains.

So that's what's happening to me is it - taken over by a different lot of people?

I'll soon be put in special rooms - like cabins .. in a hospital…"

25 Dec 2019

On opening presents: "People look at your face when you open their presents and you have to look happy!"

7 Jan 2020

A member of staff, a good-looking girl, tells us that during one of his  visits, my brother Nicholas barked at her, saying "Woof, Woof", when she entered Mum's room.

30 Jan 2020

Eena called yesterday to say Mum had a brief episode of fitting in the morning.

Later, the ever-thoughtful Marcella phoned to say the Community Matron thinks the fitting was caused by a UTI and they will get a test done tomorrow.

When we visited today, Will, a new (male) member of staff said she had started antibiotics. What for, we asked.  He didn’t know.  Are they for a UTI, we prompted?  Oh yes, that’s what they’re for, he said.

3 Feb 2020

Care Plan

The annual Care Plan review is due.  We were booked to do it with Mum’s keyworker, Kay. She's done a great job revamping the Care Plan from a higgledy-piggledy jumble of repetitive instructions to a well-organised document. I think it’s great that it now has a summary page, which might encourage staff to actually read it.

At the last minute, Claire took over the review. We weren't told why.  Now public relations is Claire's forte: she would be an asset to any organisation that deals directly with clients.  She has the ability to think on her feet and come up with plausible reasons that deflect any concerns clients might have.  For example, it is usual to find encrusted food remains on Mum's chest and on her table. I asked if the Care Plan could include an instruction to clean up the mess as soon as she’s finished eating. Well, said Claire, that's the job of the cleaners, not the care staff. But one of the cleaners had already complained to me that she frequently cleans Mum’s dirty apron, even though it is not her job. In any case, the cleaners are only there in the mornings… . Caught out, Claire agreed to put the instruction in the Care Plan.

It matters not a jot: only the CQC ever reads Care Plans.

We know this because agency staff consistently bring Mum tea that is too hot, despite a clear instruction to avoid serving drinks that might scald her.  It’s not hard to see why agency staff don't read care plans: when starting a shift in a new care home you would need to spend half a day reading the care plans of all the residents.

It simply isn’t practical.

6 Feb 2020

Theft

Mum has had her first theft after more than 6 years at Abbeyfield: a bottle of Chanel No 5 has vanished from her handbag. It was there, undisturbed, for more than a year.

Some weeks later, when we casually asked Fitz what had happened to Andy, a recently employed senior carer, she told us he had "left under a cloud, I can’t say more".

In the absence of any information from management, it seems fair to assume that Andy was responsible for the disappearance of the perfume bottle.

A Coronavirus Diary

3 March 2020

Today, there was a letter lying on the table in Mum’s room. Addressed to me, it was a notice from the administrators advising that next year’s rent increase is to be a whopping 13%. Thing is, the rest of the letter stated that the general increase in rents would be 3.5%. It took a couple of phone calls to different managers before I learned it was a mistake – her room had been confused with someone else’s.

11 March 2020

With the coronavirus creating alarm across the country, I email Eena to ask if Abbeyfield have a policy on the virus.

13 March 2020

At midday a letter arrives from the CEO. It states that he is awaiting a Government decision on the coronavirus crisis. Then, notwithstanding the fact that Government policy is that healthy people should continue to visit their relatives in care homes, Claire phones at just before 7 in the evening telling us that Grove House is now in lockdown. There are to be no visits by relatives.

Seems like a drastic, but sensible, move.

29 May 2020

Eena calls to say that testing for the virus is in progress, as per government policy. She has decided not to give Mum, and a few others, the test because it is quite invasive and might distress them. Nobody at Grove House has tested positive. So far. This, we think, is quite an achievement given that around a third of all the care homes in the district are supposed to be infected. As well as doing all the right things to combat the virus, it is clear that Abbeyfield has also been very lucky. We know of an expensive care home nearby that closed to visitors at the end of February, a full two weeks before Grove House. Yet they have suffered six deaths – all because the local hospital discharged infected patients back to the home.

5 June 2020

During the past 3 months or so, Abbeyfield Grove House has kept us in the loop with sporadic updates in the form of newsletters. We hope that when the crisis is all over, we won’t be shunted back into their usual information siding. We speak regularly to the staff on the Unit. They always sound upbeat and tell us that Mum is doing well. With no hint from the Government about an end to the lockdown, it was quite a surprise to be offered an appointment to see Mum in the courtyard, subject to stringent hygiene conditions. The day turned out to be bitterly cold. We were given blankets to cocoon us and ushered into a gazebo pitched in the courtyard. There was a box of masks and bottles of sanitiser on a table. It was all nicely-organised. As ever, the members of staff we encountered were chatty and cheery. Considering the enormous strain they must be under, they do an amazing job. Mum was wheeled in. She didn’t look in the least surprised to be confronted by two masked individuals sitting 2 metres distant. She immediately launched into a lecture on healthy eating. Meat, she declared, is important but only in small quantities. It is best eaten "when it’s nearly dead".

30 July 2020

This year we could not celebrate Mum’s 105th with her because it fell on a Sunday, when visits are not allowed. Claire told us there would be a 'do', with a cake, in the Residents’ Lounge that day. It actually took place the following afternoon, a Monday, when visits are allowed. We were promised pictures of the event. Well, we visited Mum under the gazebo on the following Wednesday. No pictures were forthcoming, but Ivy did bring the Queen’s birthday card for us to see. I showed it to Mum. She saw that it was the Queen on the front but couldn't make out the text. When we read her the message, she was none the wiser. The sides of the gazebo had been lifted, so she could see the whole of the courtyard. With its parasol tables it looked a bit like a cafe by the beach, although the tables were empty and nobody brought cups of tea. Mum thought the service was very poor. She would not go back to this tea room, she declared.

Fed up with waiting, she asked, "Can I go home now?"

3 August 2020

Following the Government’s relaxation of the rules, we can now visit Mum in her room. At Reception, our temperatures were taken. Mine was a chilly 35.3ÂşC. Someone came to escort us to the Residential Unit, to make sure we didn't linger and didn't touch anything. Once in Mum's room, we were instructed not to leave. Mum was relaxed, going on about being a tour guide in London (Parliament etc). She appeared to recognise me and seemed fairly compos mentis. She looked at me and said I was very dark and she couldn't see me properly; she complained about the TV being dark: her eyesight must be quite bad now. Because we have to book in advance, our visits can now be predicted. The result, we note with amusement, is that Mum’s room is noticeably cleaner and tidier than it has ever been. Today, even her tray, normally encrusted with food gunge, was fresh and clean. The DVDs were tidied away in a drawer and the clock was set to the right date. The one thing that missed out on the deep clean was the TV remote: it was caked in grime - until I attacked it with a baby wipe.

When our allotted hour was over, we waited for an escort, but nobody came. It turned out that the duty staff assumed we would leave and make our own way downstairs. Looking for clarification on the procedures, I emailed info@abbeyfieldthedales.co.uk, the only email address Abbeyfield publishes. As ever, there was no response, so I guessed the CEO's email address and asked him the question. Two days later, he sent an apology saying, "things haven't been as clear to you and our staff as they should be and I ask that you take a flexible approach when visiting".

5 August 2020

Frustrated about the lack of pictures of Mum's birthday party, I email Eena about them. Five minutes later, she sends across 3 photos of Mum with the cake in front of her. This crisis, one which severely restricts access to our relative, hasn't prompted Grove House managers to improve their communications: the phone system is as bad as it was when we started visiting 10 years ago; this afternoon we took it in turns to dial the Residential Unit. We eventually got an answer in the early evening, 4 hours later.

28 September 2020

For almost 3 months we were able to see Mum outside, under the gazebo, on a weekly basis. Then, when the Government relaxed the restrictions, we have been able to see her in her room. But from mid-September the Government imposed a local lockdown and Grove House brought in its own restrictions. Visits were again restricted to the gazebo. Then came the news we’ve dreaded since March – two people, both residents, have tested positive for Covid19.

We are banned from all visits.

5 October 2020

Good news. Through the grapevine we learn that the two residents who tested positive last week have no symptoms and are OK. And everyone else who was tested last week, including Mum, is negative. Outdoor visits can continue.

20 October 2020

When we try to book a visit to see Mum, nobody, not even the switchboard, answers the phone for over an hour. This is because, we learn, everyone is at a meeting. The subject of discussion is probably the fact that four Covid test results have not been returned by the testing company. The four people involved will have to be tested again and until negative results are returned, nobody can visit. I get all this from Trish, the helpful, ever-efficient receptionist. Abbeyfield have never issued an official notification of the ban. Phil Birkinshaw, the CEO, later wrote that the problem (of the missing test results) has been "escalated to an Investigations Team". We take this to mean that the test results have got lost. To add to the impression of chaos at the testing centres, a member of staff told that a friend of hers booked a test in Bradford and went to the test centre in her lunch break. There was a huge queue in front of her so, having limited time to spare, she went back to work without getting the test. 3 days later she got a text message telling her she had tested positive!

30 October 2020

With another lockdown due we book to see Mum in the gazebo. At the gate a nurse slipping out for a fag lets us in. There are two empty parking spaces so I ask if I can park the car but she refuses. So I drop Pam off, find a parking space miles away, then walk back to the gate, which is closed again. While I wait for Reception to answer the intercom and unlock the gate, a maintenance man comes by and lets me in. The entire process has taken nearly 10 minutes out of the appointed hour. In the gazebo there is no sanitising fluid and no masks, like there were last time. Pam is wearing a mask, which Mum thinks is a bandage. Quite reasonably, she tells Pam she hopes her face will get better soon. Mum isn’t wearing a mask. She is in full flow, chattering about the benefits of living in Scotland (the climate is much warmer there), seldom noticing our responses. She has no idea who I am and thinks Pam is a cousin. She has been well wrapped up but her hands are bare and the temperature is only 10ÂşC. Looking up, we can see what might be a heater hanging from the roof. After 20 minutes the maintenance man passes by and asks if we would like the heater switched on. It’s on a 30 minute timer, he says. He disappears into the building and, moments later, a weak red glow washes over Mum. It’s directed at the resident’s chair so goes nowhere near us, but at least it should warm her up a bit. Then, after only 30 seconds, the heater conks out and the autumn chill returns. The only means of contacting the staff is by phone. So I call to say Mum is cold, asking for her to be taken back to her room. When Fitz and Jo appear they point at me, telling her, "this is your son, Stewart". Taken aback, she peers at me: "Stewart? It’s my Stewart? I have a son Stewart. It doesn’t look like him. This one’s got no hair".

4 November 2020

We get an update from Grove House telling us that there are to be no more visits either inside or outside. This, says the CEO, follows the Government guidance that came out when the latest nationwide lockdown was announced. Unfortunately, the update is already out of date: following a judgement in the Court of Protection, the Government has just announced that visits to care home residents are allowed, subject to the usual precautions.

12 November 2020

Birkinshaw wrote to tell us that up to two designated relatives can visit, though not at the same time. The staff, though, have interpreted this to mean that only one relative can be designated to visit. So I get the short straw and return to the gazebo alone, in Nippy November. This time the heater works fine. It does go off 10 minutes before the end of the session, but there’s a residue of heat that keeps our fingers above freezing point. Just. The theme for the visit is care homes: "People are living longer but somebody's got to look after them. They've got homes galore for people who can hardly make a meal for themselves. It'll come to me some day I suppose but by that time I'll have no family left. Who's to look after me then?" (laughs)

24 November 2020

It has been a week since the CEO wrote to cancel all visits because of a Covid19 outbreak at the Grove House apartments. 7 residents tested positive. A "number of staff" were also infected. We thought it a bit odd that the number of staff who tested positive was not specified, but perhaps the CEO thinks it's something we don't need to know. As the latest batch of results from tests done on the 18th must have come back by now, asked the Registered Manager if there is an update in the offing, so that we might learn when we can visit again. She didn’t know.

3 December 2020

Some positive news at last: Abbeyfield are to install "pods" to allow relatives to visit their loved ones in comfort and safety. Visits are due to start on the 14th. I now have clarification, of sorts, of the visitor numbers rule. The CEO told me that "2 can visit at a time whilst attempting to keep that to 1 if possible to reduce the risk." The latest update gave no information on last month's Covid19 outbreak. Is it a case of No News Is Good News and it's now safe to visit again? We don't know.

17 December 2020

As promised, a couple of pods have been installed and are ready for use. Great, we thought, and enquired about a booking. But a senior carer dashed our hopes, saying Mum might be spooked by the pods, they are so small. We don't know what they look like - a photo would have been helpful - but when someone else described them as 'coffins' we accepted that we won't be seeing Mum until the Government ease restrictions at Christmas. Sadly, the day after we booked for the two of us to visit Mum on Christmas Eve, the CEO wrote saying that, "Only one of the two designated visitors will be allowed to visit at any time."

24 December 2020

I turn up, alone, to see Mum. The staff aren't aware of the CEO's recent instruction and are expecting the two of us. Never mind - it's complicated enough just processing one person: issue a testing kit; give instructions on how to take a swab, whilst warning about the gagging reflex; get them to complete a paper contact form; get them to complete an electronic form (tricky if you're not used to using a smart-phone); wait 20 minutes for the test result; get them to don plastic gloves and an apron; and finally, lead them through the building to the designated visiting room. Mum is slumped in her chair. My appearance perks her up and she starts chattering. Considering her future, she says, "I've got a good few years before I retire". She reads her cards and successfully pulls a couple of crackers, disappointed not to get the sections containing the prizes.

28 December 2020

Pam phoned to ask the Manager whether Mum coped with whatever was laid on for the residents on Christmas Day and if there are any photos. But she didn't know.

12 January 2021

The Government has just published its Guidelines for Visiting care homes during Covid-19. Section 1.3 concerns policies on visiting. It says, "...those with power of attorney should be consulted, and ... must consent on the person’s behalf to the visiting policy".

All well and good, but, as POA, I can't recall ever being consulted about anything to do with visiting.

23 June 2021

With the gradual relaxing of restrictions, coupled with increasingly clement weather, we have been able to take Mum outside, sometimes as far as the town. She enjoys these excursions immensely. She observes what's going on and comments on the plants, animals, people and buildings she sees. However, she usually starts a visit quietly, with a downcast demeanour. Things are not to her liking: the tea is nothing special, too cold, tasteless; the flowers in the borders are faded and listless; the weather is dull. Miraculously, as times goes on, she perks up and soon collapses into fits of giggles about this or that observation. The tea becomes good, the flowers lovely, the weather nice and warm. The themes of her conversation vary from visit to visit: one day it might be European wars and fighting with swords; another day might be devoted to the differences between north and south; on another day she might recognise the value of maidservants. But yesterday she seemed to point to the source of her low moods: boredom, brought about by lack of attention. Although it is hard to be sure, we wonder if these few remarks point to a feeling of being abandoned in her room and left to her own devices: "The whole place is like that. Nobody cares. They're only caring about themselves, perhaps, that's all. I think this place is typical of all the other places in the whole country....that's the only sort of place you'll ever be near a hospital. They're really terrible. There seems to be nobody in charge of it either that you can speak to about what you think of it. And nobody comes. No. Nobody comes".

We wonder if that says it all.

27 July 2021

Mum’s 106th birthday was celebrated yesterday. Well, sort of. We didn’t attend because there was to be a party in the dining room and visitors are still not allowed in communal areas. On the day, though, staff decided a party might be too stressful for her. Instead, we were told, they fed her slices of birthday cake in her room.

So I proposed collecting Mum this morning and taking her to our house for a birthday party in the garden with a couple of friends. The Manager was perfectly happy with this arrangement. We festooned the garden with birthday decorations and bought another cake.

Collecting Mum from Abbeyfield on such occasions requires patience: they usually bring her down late. Although she was a mere 10 minutes late on this occasion, our taxi driver was scathing. Abbeyfield, he declared, is terrible at organising things: people don’t communicate. But, he went on, they’re all the same in Ilkley. And Abbeyfield isn’t the worst: that accolade goes to the care home "on the hill".

Carefully, he loaded Mum into the back of the taxi, got into the driving seat and drove off. He didn’t need to start the engine: it had remained running for the last 15 minutes, pumping exhaust fumes into Abbeyfield’s grand entrance.

Abbeyfield’s idea of dressing Mum for her day out wasn’t quite what we expected: there were none of the clothes we’d requested; they’d put bedroom slippers on her feet; her dentures were missing and her glasses had been forgotten. Her fingernails, though neatly trimmed, were dirty and her chin needed a shave.

As the taxi driver said, "if it’s like this when you’re here, what’s it like when you’re not?"

At the start of her day, Mum was anxious and paranoid: she was ill, she said, and refused the tea in case it was poisoned. But, as ever in attentive company, she slowly relaxed and was soon giggling merrily, even as she delivered a lecture on housework.

At the end of a delightful afternoon, I took Mum back to Abbeyfield. "This is a nice hotel," I suggested. "Would you like a cup of tea?" "Oh yes," she replied.

I had to repeat the subterfuge at least 10 times because we had to wait 15 minutes for her to be collected.

Norman, the carer on duty, let slip that she’d got a card from the Queen. This was news to me because I’d twice been told that no royal card had arrived. I asked him about it.  He told me he’d found it in the office among a pile of other mail.

This didn’t surprise me – I was used to finding mail that was days, weeks, and even months old. Over the years, quite a lot of important mail has simply gone missing. Mum used to get the blame for binning it but now I’m not so sure.

04 September 2021

A podiatrist visits the home every 6 weeks or so. I had to phone the company, LFW Podiatry, because it demands payment in advance. I already knew that the cost of the session will be 20% more than last time. I asked about it. "Yes," she said, "there's been a slight increase."

07 September 2021

During the lockdown, when we were unable to visit for long periods, I would ask the staff if Mum got taken outside much, something she loves doing. Oh yes, I was always assured, she (and other residents who like going outside) would often be taken down to the courtyard on nice days. Today was glorious and we turned up, without an appointment, fully expecting to find various residents sunning themselves in the courtyard. But it was empty. We found Mum in her room, fretting. She'd been sacked from her job, she said, and didn't know how she was going to support her family. And the job? Well, it was nursing. She didn't like it much. In particular, she did not like caring for men, "with all their dangly bits". We asked that she be put into a wheelchair and we took her down to the courtyard where, instantly, her mood brightened.

08 September 2021

It's another lovely day, so makes another visit. Once again, there are no residents in the courtyard. Not in the morning. Not in the afternoon.

10 September 2021

The strange case of the wandering floor lamp

Among the many possessions that have gone missing from Mum's room over the years - her wedding ring, a multitude of clothes, bedding, hair drier, scissors, glasses, Chanel No 5 ("my favourite, given to me in Paris after D Day") - was a floor lamp that stood behind her chair to help with reading. It disappeared during the lockdown. The manager thought it might be in a storeroom but didn't offer to look for it. Several weeks later Pam, who is more forthright than me, asked Janet, a junior carer, about the lamp and other missing items. Janet didn't know, but took the problem seriously and reported it to Claire, the deputy manager. A cleaner was asked to do the searching and found the lamp in another resident's room. How had it got there? Nobody is saying. Is the other resident a lamp thief? Or did a certain member of the management team think the lamp might look better in someone else's room? Who knows and, if they do, they’re not telling.

It’s worth saying that Abbeyfield’s Statement of Purpose makes it clear that residents’ possessions are private: that is to say they are not to be taken for communal use, without consent.

16 September 2021

Today Mum talked about her father, one of a family of 10 boys. "They should cut down their children", she declared.

"Cut down their children?" I queried.

"Sorry, I mean cut down the amount of their children, ha ha".

3 October 2021

As soon as we arrived today, Mum launched into her theme for the day: theft. Thievery is everywhere, she declared. Looking at an early picture of her husband, she said, "that man is still alive but he's still a thief". Sundays at Abbeyfield are usually quiet and relaxed. Today the staff looked harassed and a bit down. Far from the Covid crisis being over, its effects are being felt big time. Take the Health Minister's recent statement to the BBC: "If you work in a care home you are working with some of the most vulnerable people in our country, and if you cannot be bothered to go and get vaccinated then get out and go and get another job." There speaks an ignorant man who hasn't a clue about what goes on in the real world. One staff member was obliged to get vaccinated, despite her protestations: she nearly died and, the CEO tells us, will be off sick for many months. In a soothing letter to relatives, he wrote, "I am confident we have the right resources, support and oversight for the residential care service". He made no mention, supposing he is aware of it, of a looming crisis in staff morale and recruitment: Grove House used to have a low staff turnover but currently has 7 vacancies - there is clearly a shortage of staff; at least 2 members of staff are having to leave because they don't want to get vaccinated; the situation is exacerbated by management's policy of taking on new residents who have advanced dementia. Yet the Residential Unit has neither the facilities nor the additional trained staff to handle such people. The Unit never used to accept residents with dementia (my mother was exempted from the rule because the manager at the time, a wise woman, saw that her dementia was benign and would cause no problems; she was proved right: my mother has generally been a delight to look after). Until the start of the pandemic, there were only ever 2 or 3 residents with dementia. I recall that one was actually told to move to a more suitable home because the Unit could not cope with her behaviour.  Now it looks as though most of the residents have the illness. With no extra staff being taken on, the existing carers are running around like blue-arsed flies, doing extra hours and generally feeling under severe pressure.

7 October 2021

We learned today that Abbeyfield has another policy that reduces staff numbers: employees who are close relatives – siblings, mothers and daughters etc – are not permitted to work together on the same unit in case they cover up for one another during an incident that requires investigation. This is from an organisation whose managers' first instinct is to cover up their mistakes. Ah, the irony!

10 October 2021

For the third time in recent days, Ilkley Moor Medical Practice, my mother's GP service, has asked me to sign consent forms approving her Covid and flu jabs. I wonder if this means the GPs will, in future, ask for my consent for other treatments. Up to now, they haven't bothered.

I was reminded of a conversation we had in February 2018 with Dr Naomi Senior, a partner at the practice, when I asked if the practice GPs would consult us about Mum's treatment. No, she said brusquely: they do not need to ask our advice about these things and, anyway, there is no time to phone relatives.

A rude, arrogant woman, we thought.

30 November 2021

We attended the funeral of a resident who had been at Abbeyfield even longer than our Mum. Abbeyfield did not send an official representative. One staff member did go, however: she had to drag herself from her sick bed to do so.

31 November 2021

Treatment not Care

We were called just after midnight by a frightened member of Abbeyfield’s night team.  Mum was vomiting blood.

It took 5 minutes pressing the door buzzer before we were let into the building.

The paramedics were already there, getting her ready to be stretchered off to hospital.

But this was not the way it was supposed to end: Abbeyfield, as we are often proudly told, subscribes to the Gold Standard Framework (GSF), a palliative care arrangement that allows people to be looked after in care homes. Anticipatory drugs are supposed to be kept on site, to be administered by on-call District Nurses.  Being carted off to hospital is not supposed to be an option for people who do not want to be resuscitated.

But Nish, who was in a bit of a panic, seemed not to know about the GSF. The paramedics didn’t mention it either.  I had no choice but allow them to take Mum to Airedale A&E.

At A&E, a lovely consultant with a summery name came in and told us there was nothing they could do except observe.  She would, she said, have preferred to discharge Mum back to Abbeyfield, but this was tricky at 2 o'clock in the morning.  So she would admit her for observation and in the morning the medical team would review her and try to get her back home as long as the GSF plan was in place.

At 5am Mum was admitted to the Assessment Ward but, because of Covid19 regulations, we were not allowed to go with her. Then, because of Covid19, we were barred from visiting for 24 hours.

More than 12 hours later, I got the first hints that the medics in the main hospital were intent on ignoring their A&E consultant’s recommendations:  they started Mum on antibiotics and other medications and gave her an ECG. An exceptionally alert and smart doctor noticed that one leg was shorter than the other, so ordered a hip X-Ray. Had he bothered to check her medical notes he might have spotted a hip replacement from 1997 that would have explained the abbreviated appendage. 

We were outraged that Airedale NHS forced our Mum to endure uncomfortable and unnecessary investigations and a futile antibiotic prescription that served only to give her an unpleasant, painful dose of thrush.

Another 6 days were to elapse before Mum got back to Abbeyfield.  We were allowed an hour’s visit every day, though not together.

During this period, she had 6 (yes: six) changes of room. She said to me: “I don't know whether I belong over there or over here; nobody belongs to me and I don't belong to anybody and nobody wants me”.

We arranged to see Airedale’s Geriatric consultant, Dr Rasheed Mohammed, hoping to give him a piece of our mind. As the appointment time came and went, it became clear that Mohammed had given us the slip: he was last seen legging it out of the building.  We had to make do with talking to Dr Helen, his Registrar, who could tell us nothing about how Mum was assessed for treatment.  She trotted out the old line about the decision being taken in the patient’s best interests. Really?

6 December 2021

In the late morning, as Mum was being discharged back to Abbeyfield, Rebecca, the Ward 4 Sister, remarked: “Penicillin’s a wonderful thing, isn’t it?” She and her team believed they were miracle workers, saving people, nursing them back to health. 

Post Script:

Unfortunately, Sister Rebecca took no account of the physical and mental discomfort that came with their investigations and treatment: Mum was to endure a further 5 weeks of slow and painful decline before she could rest in peace.

At a time when hospitals are forever complaining about elderly patients who bed-block because they have nowhere safe to go, it seemed ironic that Mum, who did have a safe place to go, was held back in hospital, against her will. Her will was expressed by us, her advocates, her relatives and her carers. We were comprehensively ignored by the medics.

10 December 2021

We have learned, by chance, that a staff member has had Covid19 and has recovered OK. It’s been only a year since the CEO was writing to us telling us of an outbreak so that he could impose a ban on visits. This time he has been silent.

11 December 2021

Dr Summer, Mum’s GP visited. He turned out to be the husband of the consultant she saw at A&E. He knew what had happened  after the transfer from A&E and was shocked when we told him about Mum's treatment in Ward 4. He classified her as Code Red, meaning she is at the end of her life.

15 December 2021

The proper staffing level on the day shift is supposed to be 3 carers. But there have been plenty of occasions when there only been 2 carers on duty. This, we think, has been the root cause of more than a few instances of neglect in the past.

Recently though, the staffing situation seems to have improved. In the last few weeks, there have been at least 3 staff, sometimes 4, on duty.

We have been observers of what goes on at Abbeyfield for more than 8 years.

At the start, we saw ineffective direction from management, which often seemed quite amateurish. The care was sloppy at times; there were accidents caused by a lack of common sense; there were cover-ups; communication wasn’t great. Today, the current crop of seniors has improved all of the above, though there isn’t much they can do about management failings.

There is now an air of efficiency about the place. Requests we make are not forgotten: action is taken right away and we are kept informed. Getting information is no longer like drawing blood from a stone: it’s freely available. Residents continue to be treated with great respect and good humour, often accompanied by a substantial dollop of patience. All in all, being a relative of a resident is a much less frustrating business than it used to be.

16 December 2021

The staff have been leaving their Diary of Mum’s daily activities in her room.

We see there are inaccuracies that are down to the fact that the diary often gets written up at the end of a shift.

But the most interesting – and concerning – inaccuracy is more like a falsification. Mum is supposed to get turned in bed every 4 hours day and night to avoid pressure sores. This was usually accomplished during the day, though it sometimes stretched to 7 hours. During the night she would be checked every 2 to 3 hours (by opening her door and having a quick peek) but not turned. We knew this because we placed a hidden recorder in her room.

But the Diary told a different story - it said that Mum was repositioned every 2 to 4 hours.

17 December 2021

Mum has been confined to bed for a while. She still has plenty of awareness. And is always appreciative of the care she gets. "It's a lot of work for you. I'm sorry about that", she said. 

The bed, by the way, has a basic pumped air mattress provided by the NHS. It’s intended to prevent pressure sores. But as bed-bound patients’ skin gets more fragile, a ripple mattress is better. Mum’s carers knew this, Abbeyfield’s management knew it, yet a mattress was never ordered.

28 December 2021

Mum gets turned in bed every 4 hours (though it sometimes goes to 7 hours) to avoid pressure sores. It’s normal for 2 carers to undertake this task. This afternoon Claire, the deputy manager, breezed in and did the job herself, alone. She preferred to do it on her own, she said. She had done it so many times.  I watched as she turned Mum onto her side, keeping her in position with an elbow held against her hip, while the other hand cleaned her and changed the pad. It was slickly and competently done but, I thought, potentially risky. It was a performance that was meant to impress me and satisfy her ego. But I’m not sure that it was in my mother’s best interests.

4 January 2022

Mum has been winding down for a while. We know this because she is quiet, seldom speaking. For a woman with the gift of the gab, this is remarkable.

The last thing she said went something like this: “everyone, those who feel they are on the outside, should come into the fold. Ring my friends and tell them. You don't have to wait for a special occasion. You don't have to wait till you're 100”.

She sleeps much of the time, waking only to sip tea or soup. The painful thrush in her mouth bothers her a lot, but otherwise she seems comfortable.

13 January 2022

Dr Mell was visiting another resident, but popped in to see Mum. He looked at her sore, thrush-ridden mouth. He prescribed Nystatin, even though it is supposed to be swallowed and Mum can barely do that. He didn’t say much so I checked her medical notes online. They confirmed Mum’s Code Red classification, meaning she is in her last days of life.

Slipped in at the end of the entry was this: “Fast track funding.” Looking it up, I found that it means the NHS will pay for her care because she is end of life. Without the usual hoops to be jumped through. Why hadn’t Mell mentioned such an important thing?  And why hadn’t Dr Summer applied for Fast Track funding back in December, when he graded Mum as Code Red, end of life? 

The inscrutability of the medical profession knows no bounds.

Post Script:

When I asked, the Ilkley Moor Medical Practice manager told me they routinely do Fast Track referrals for people living at home, but not for those in care homes. This may sound perfectly reasonable, but it happens to be against the law: the NHS is not allowed to discriminate between the two.

14 January 2022

Rude health

Until early December 2021, when she was discharged from hospital and her GP visited to check on her, Mum hadn’t seen a doctor for nearly 2 years. Now two have visited her in the space of 2 days. Actually, they were visiting another patient and saw Mum in passing, as it were.

The ever-arrogant Dr Senior (see 10 October 2021) came into the room with the deputy manager. She did say "Hello" to Pam, who was sitting in the corner, before having a quick look at Mum. She then discussed her findings with the deputy manager, completely ignoring Pam, as though she was not in the room.

17 January 2022

Our Mum has had wonderful care from experienced, highly skilled carers, many of whom knew her for years. Thank you all so much.

7 February 2022

Departure

My brother’s last visit to his mother was more than 30 months ago. His wife hadn’t seen her for 4 years, his son 5 years. A small group, they stood apart from the other mourners, watching us walking ahead of Mum’s hearse on its slow approach to the crem. If they felt like outsiders, they didn’t show it. There was minimal contact at the funeral, a bit more at the wake. They did say it was a good service. They weren't much interested in Mum’s last months of life. J boasted that getting to the funeral was easy because the train from London is fast, cheap and convenient.  So why hadn’t she bothered to visit her mother-in-law during her life?  We didn’t ask. 

Geraldine, an old friend of Mum’s (and theirs), came over, introduced herself to Pam, then asked: “did you visit Elizabeth often?” as though checking on something she had been told: that we had neglected our mother. It seemed rather an insulting thing to say to a complete stranger. “Indeed we did”, Pam replied, walking away. 

We were pleased that Dr S, her former GP, came to the service. As he hugged us, he said: “You should be very proud of how you cared for your mum”.

Two of Mum’s favourite carers also came. They were not official representatives, though: Abbeyfield does not do that sort of thing.

15 February 2022

Mutiny about the bounty

Today heralds the start of what promises to be some prolonged wrangling over what my sibling owes me and what he expects to get from his mother's estate.

Back in 2014, as part of an attempt to make me drop a court action against him, N agreed to pay me interest (at 5%) on the expenses I incurred in looking after our mother. Depending on how you do the calculations, it comes to quite a sum.

Today, out of the blue, came this: “You keep all that is left in the estate” and I pay you £100,000 to settle all liabilities”. Hmm. Is it a joke, is he sane?  Who knows, but I'd better go along with it just in case it’s genuine.

He named his son Stefan, newly-qualified, as his lawyer, so I wrote to him, hoping for a rational voice to get to the bottom of things. In his guarded reply, Stefan claimed to know nothing, but did demonstrate a fluency in corporate speak: “happy to be a point of contact …. for any without prejudice discussions”.

Post Script:

A few days later came this: “It seems on further analysis and discussion with my accountant that in fact I don't owe you anything. The offer is therefore null & void”.
17 February 2022

I told my brother that Mum’s ashes had arrived. He did not respond. We have had a spree of scattering ashes in all sorts of places associated with her.

22 March 2022

Probate

The Grant of Probate has been issued. To date N has notified me of 4 lawyers he has supposedly instructed to challenge Probate and enforce his belief that he is entitled to a large sum from his mother’s estate. It hasn’t sunk in that she lived so long all her money was spent on her care. Her Estate is, in fact, insolvent: there is a small deficit; I am quite sure my brother will not be offering to make up the difference.

I found a solicitor, Mewies of Skipton, who told me to get some insurance and to do nothing for 6 months, when the time for a legal challenge will have passed.

Post Script:

When Mewies sent its bill, it turned out to be a work of fiction. The firm refused to accept it had done anything bad, such as commit fraud. But it did reduce the bill. Substantially.

23 September 2022

The deadline for a legal challenge to Probate having passed, I felt able to send my brother an interim account. Things are no nearer to being finalised, though. I used the government's Tell Us Once service to notify its departments about Mum’s death. The DWP replied by sending a letter of acknowledgement addressed to her at her former home.  HMRC was silent, so I rang, expecting to be hit with a tax demand.  Instead, they said she was due a rebate and the cheque was in the post. They did send a cheque, but someone mangled my name, making it unusable. I had to phone again to ask for a replacement. This time they said it would take 4 months to process. A few days later, they sent a tax demand. When I queried it, I was told that the rebate department and the billing department at HMRC don’t talk to one another.

Post Script:

After 4 months, when the rebate cheque still hadn’t materialised, I asked Mum’s MP to investigate. A week later, the cheque arrived. Soon afterwards, something extraordinary happened: HMRC phoned me to apologise for the delay and offered £50 in compensation.

28 September 2022

Years ago, I did some work on one of my brother’s rental properties and billed him for £3K worth of expenses. He agreed to pay on numerous occasions, but never quite got round to it. Earlier this year, I asked him again and was told to “fuck off”. Frustrated, I took out a Moneyclaim against him.

He responded by calling Pam a “bitch”, hiring a private detective (so he said) to look for something he could blackmail her with, and threatened to oppose Probate in the high court.

29 October 2022

Sabre rattling

My brother has at last made good his threats of legal action over Probate: a letter has arrived from Joanna Cox, a solicitor friend of his son. She threatened dire consequences if I, as executor, did not provide estate accounts. She demanded receipts for all expenses. She gave me 14 days to comply.

Fortunately, I am something of an expert in probate law (thank you, Google!), so waited a few weeks before sending the solicitor a polite acknowledgement that ignored her demands with menaces. I noted, as a means of sowing seeds of doubt in her mind, that she was the 5th solicitor my brother had used against me that year.

4 November 2022

A Black Spot day

The deadline for my sibling to file a response with Moneyclaim approaches. This may be why he sent an anonymous letter direct to Pam earlier today. The writing on the envelope was disguised but the contents, though unsigned, are in his characteristic handwriting.

It’s a blackmail letter.

Then, later in the day, Amazon delivered a wreath addressed to Pam, accompanied by a card inscribed ‘RIP From Anonymous’.

She is very upset. We are going to call the Police tomorrow.

11 November 2022

Police Constable 5502 came round and took a statement from Pam. He logged the complaint as ‘Malicious Communications 0587’. She decided not to take further action for the time being. The case will remain on file.

30 November 2022

A broadside from The Revenge

My angry sibling tried to get the Moneyclaim dropped but did not file a response in time for the 16 November deadline.

A default judgement was issued against him.

He sent an email: “You got CCJ against me you fucking bastard which means I cant get credit. Ill see you in hell you fucker and your fucking bitch of a girlfriend. You are a dead man walking when I finish with you you fucking bastard”.

Like many a gangster (or pirate), my brother uses threats and blackmail rather than smiles and soap to get his own way, which is to persuade you that his fantasy world, his dream (as in his oft repeated “living the dream” quote), is real.

2 December 2022

I like to picture the scene when my brother presented his credit card, perhaps when dining out with his wife, and it was declined.  Some colourful language might have ensued.

In desperation, he got his wife to write asking me to inform the court that he’d paid up (he had, yesterday). This, apparently, is the swiftest way to get a County Court Judgement removed from your credit file.

5 December 2022

A loose cannon

Taking advantage of the contact with Jacinta, I wrote describing what her abusive husband had done and also mentioned his threat of court action over the Estate.

She offered to act as a neutral go-between. In my view, though, J is about as neutral as a bath of acid.

Her first communication contained an apology from my brother saying, “I can in no way justify my behaviour except to say I find it difficult to control my hot headedness”.

He blamed his bi-polar: “I am now receiving help from a clinical psychologist to cope with my mood swings”, and: “my attachment to money is holding everyone back including myself as at our age we should be just enjoying ourselves”.

All very contrite, but it went only so far. With no proposals for making good the damage he had caused and none for dealing with the Estate and other matters, I felt we were back, if not at square one, then somewhere close by.

11 December 2022

Executors are encouraged to be politely cooperative when hassled by disgruntled beneficiaries. So I put in the hours and trawled through acres of documents looking for the expense receipts Joanna Cox, my brother’s tame solicitor, had demanded. There were lots missing, especially from all those years ago. On the plus side, I found several I had forgotten about.

Conjuring up my most persuasive narrative, I put them all into a spreadsheet and, with some trepidation, sent them off to the solicitor.

To my surprise, there were no questions or hair-splitting. I got no acknowledgement from Joanna Cox, but my brother wrote: “I am happy with all the expenses.” And: “It is just the final balance sheet that needs to be resolved”.

There is more than this final balance sheet, though. There is the 2014 agreement, made through a different solicitor, to pay me 5% interest on my expenses. He probably hoped his 99-year-old mother would soon be gone and his bill would be manageable. (When I was in Switzerland shortly afterwards, he emailed: “why don’t you check out Dignitas?”) 

8 years on, the bill has ballooned to more than £80K (compound interest might be Einstein’s eighth wonder of the world, but it’s a nightmare to debtors).  Last year he acknowledged the calculation by offering to pay me two tranches of £50K each over the following 6 months. It never happened of course. A few days later, he wrote: “It seems on further analysis and discussion with my accountant that in fact I don't owe you anything. The offer is therefore null & void”.

5 January 2023

The final Estate Account went off by email today. J, the wifely go-between, acknowledged it, saying she was visiting family, was on her way home and would forward it to her husband.

Thing is, they’d just posted an Instagram of themselves, together, at a ski resort in France …...

10 January 2023

Still at loggerheads

As he’d said earlier, the final balance sheet needs to be resolved, so he sent it to his accountant, who reported back with some claims. Thing is, it was obvious from the amateurish style of the remarks that my brother had written them himself.

One of the claims concerned the arrangements I made for paying for Mum’s care home fees: “the local authority would have, in practice, paid the balance of the care home fees and taken a charge against the Estate. In summary, you did not take reasonable steps to mitigate your costs in relation to the care home fees.”

The ‘accountant’ misunderstands two things. First, Bradford Met, the LA, was not legally obliged to offer what is known as a Deferred Payment Agreement (DPA). I did ask for one, but was refused.  Second, had a DPA been granted, it would only have paid the fees that Mum herself was responsible for: because she could only afford 35% of the fees (plus an LA subsidy of 20%), I provided the balance, known as a top-up. With a DPA in place and the subsidy removed, my top-ups would have increased dramatically. The local authority recoups its contributions, with added interest, when the house is sold.

13 January 2023

I chanced upon a recent social media post by a man who had cared for his father:

This was a choice that I made and do not regret. It was not easy as there were times when my life was on hold. I would not change any part of that as it was important for me to provide the best care for my father that I could, in the same way he completely supported me as a child.

My brother’s wife posted a comment: “Well done Pallvi for caring for your Father and for highlighting the impact of caring for others!

Jacinta has never given us any praise for looking after her mother-in-law. On the contrary, we strongly suspect they have both been slagging us off to their friends.

20 January 2023

Curiouser and curiouser

Received a message ostensibly sent by my brother’s accountant, one named SAB.  Curiously, these are the initials of his son, who is a lawyer.  SAB’s first paragraph read:

N has forwarded me your response via his wife. Please note that J is not happy being a go between and will be confirming as such shortly. SAB”

Wondering why an accountant would be concerned with such matters, I asked his wife for confirmation, writing:

“Working out what is true in N’s statements has never been easy (he has become an arch manipulator who uses deception, as well as intimidation, to achieve his ends). Perhaps you could confirm the veracity of this email from his ‘accountant’.”

Jacinta replied that the email was from her husband's accountant, but that she was still acting as the neutral go-between.

‘Acting’ seems to be the operative word here.

25 January 2023

A quantum of nonsense

SAB, my brother’s phantom ‘accountant’, has sent this piece of gobbledygook: “...using strict accountancy criteria and case law, .. far from there being a deficit in the [Estate] account, there is in fact a surplus...

This seems to contradict his: “I am happy with all the expenses” endorsement of 11 December.

When dealing with my brother, you have to accept that the Earth may be spherical one day, but flat the next.

SAB went on: “As there is no wish on the part of NB to prolong this dispute and incur further legal and accountancy costs it is proposed that as previously proposed that NB will sign off the estate accounts as long as it is agreed that there is and will not be any further liability or claim against him  Regards SAB”

So, the Estate Accounts are accurate.  But inaccurate when he’s being hassled for money.  Schrödinger’s cat(fish) would have understood the paradox. Probably.

30 January 2023

A long shot

Following his refusal to sign the Estate Accounts unless I drop the 5% interest claim against him, my sibling's 'accountant' has conjured up a debt owed to his client, writing that Nick “will forgo the sum owed of approximately £15000 as long as no further claims are made against either party”.

5 February 2023

Cat fishing in North London

Still masquerading as an 'accountant', N has written that he will be claiming travel and hotel expenses "relating to care of ESB" (his mother). As he only saw her twice a year on average, it shouldn’t amount to much.

Bizarrely, the 'accountant' intends to send me, the Executor, a "full estate account ... (taking advice from accounts and legal)".

There is also this repeat: "NB has adviced Jacinta Hargadon not to respond or pass on any further messages to NB & desist from sending further messages to JH".

At the end of the email the 'accountant' writes: “Stefan [NB's son] has asked NB to pass on the happy news that he is getting married and you will soon be both receiving a wedding invitation. He is asking about your succession plans as he is your closest blood relative...(i.e. your Will). Perhaps you would be kind enough to elucuidate on this matter”.

My brother evidently thinks his son is entitled to receive a financial provision from his uncle, a notion that fits in with an earlier complaint of his:you haven't put your hand in your pocket to help with [his private] school fees”.

Post Script:

There was a wedding (18 months later), but no invitations.

11 February 2023

Poles apart

Regarding N’s 2014 offer to pay interest on my expenses, the 'accountant' tells me my brother “had assumed that the interest was for one moment in time...ie the principal times 5%. Otherwise if ESB had lived until the oldest woman in the world (119 years) then he would owe an enormous sum.” 

Well, yes, you would owe quite a lot unless the agreement stated that it was for a limited period only.  Which it didn’t.

The reason, he notes, was that "Nick did tell John Baily [the incompetent solicitor] this in a face to face conversation at his office but he failed to put this in his letter". Shame, that.

In the same email, I am told that “N's life has been "on hold" since the age of 20/21 with an incurable condition called "bipolar 2 disorder" which comprises moderate/severe depressions in the winter”.

I am familiar with the bipolar claim - N used it in an attempt to pull a sickie and adjourn the hearing in my 2014 court claim against him. But the judge was having none of it: the hearing went ahead without him. He lost.

5 March 2023

Booty from the beast

I sent N a heavily-discounted final demand, one tailored to the £10K threshold of the Small Claims Court. I got  an instant acceptance and a payment of half the bill, with the rest to follow.

But shortly before the final payment was due, he resumed his bullying tactics, demanding an undertaking not to make any more claims against him.  Or else …… he would withhold the balance.

I ignored this, instead asking if he’d reappraised his view of how we’d cared for his mother over the past 13 years.  Having to say something nice about us would, I reckoned, involve a certain amount of squirming insincerity. 

I was not wrong.  He, or perhaps it was one of those parrot GPT chatbots, wrote: “we are extremely grateful that you were able to look after Mum so well … it must have been very challenging and stressful at times … although I guess at times rewarding. Thanks once again for your sterling work”.

It was nice to learn we’d been rewarded.  In sterling?  Might the parrot pirate cross my palm with silver? 

Not a chance, not by a long squawk:

Pieces of eight, pieces of eight’, was the flint-hearted parrot's taunt a year ago when he dangled, then withdrew, that £100K fantasy 'offer’.

Well, the last few years have certainly been a rum do. 

But little does the parrot pirate know it's me having the last laugh:

Yo ho ho.

4 April 2024

After the Alzheimer Society's current TV advert which promotes the notion that the disease's relentless progression causes people to 'die again and again and again', I thought I would add my thoughts: I suppose what the ad means is that carers and relatives grieve and grieve again. In our Mum's case, the slow progress of the illness meant this didn't really happen. We had time to adjust to her mental changes, to accept each change for what it was - a new version of Mum. There were slight differences in our two perspectives: Pam was more likely to grieve that Mum wasn't how she used to be, while I was more likely to accept each change for what it was. That didn't mean there was any difference to our respective approaches - we both soon learned that the best way to connect to our Mum was to enter her reality, even when it seemed a bit bonkers.

In contrast to some families, we were lucky: looking after Mum was often a pleasure, full of laughter and joy.