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.

This is an occasional diary of events.

Some names have been disguised.

Friday, 28 April 2017




























26 Dec 2008
Recently, there have been incidents that have concerned us. I arrived one day to find the house full of gas. Then there was the electric kettle that melted on the gas hob. The lodger got the blame for that. Mum is booked in for a memory test early next year. My brother and his partner visited. I asked him if they wanted to take Mum out somewhere. He said "No" as though the idea hadn't crossed his mind. I was stunned. Eventually, we drove separately to Ilkley. They arranged to meet us at Craiglands for afternoon tea. I waited in the foyer with Mum for 30 minutes beyond the appointed time. We were just about to leave when they turned up, saying they’d been doing a bit of window-shopping.
31 March 2009
We visit Hain House in Ilkley and view a bedroom reserved for respite use. The staff seem happy and friendly. The place is spacious, light, well-equipped and clean. Unfortunately, out of 16 rooms, only one is available for respite at present. 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.
8 June 2009
Though apprehensive at first, Mum seems to have enjoyed her first visit to the Hain House 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.
6 September 2009
Collecting Mum from Hain House after a respite stay, we start to have our first doubts about the place:  M notices that she smells strongly of urine – perhaps as a result of an ‘accident’ that day.
2 June 2010
Mum phones from Hain House in a confused state, claiming that things in her room were missing and that members of the staff have been in there with their friends. She thinks they have been having a party there. A large item has been left on the bed. She thinks it is a rug.
8 June 2010
When we collect Mum from the Respite Unit, half her clothes are missing. Hain House don’t 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.
28 October 2010
On collecting Mum from Hain House, we are assailed by a strong stench of urine in her room. We trace the pong to a bedside locker, finding two, or perhaps 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 doesn’t 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 information 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 glowing 3 Star rating bestowed by the CQC.
2 June 2011
After a written complaint about last year’s 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 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 visits, along with her grandson and J, his partner, as part of the deal to give us a break from looking after Mum. We head off to Fountains Abbey for a couple of days, leaving a small tape recorder running so that we know how they treat her.
On arrival, they chat to her for almost an hour and a half. Then they leave her alone and disappear for more than an hour. On their return the tape records them in the lounge, while Mum is left to her own devices in her room.  J comes in from the kitchen, saying:
Nick what’s going on? Who are you texting? You’re just in here while I’m washing the dishes”. She grabs his phone.
He responds with: “Gerr off! What’s the matter with you? Gerr off my phone! You can’t just take my phone away, it’s my property! Give my phone back! It’s my phone!
She says: “I’ll throw it in the fucking garden!
He whimpers: “I’ve hurt my back. I’ve got to rest it.
She says: “You can rest your back. Lie down if your back is so important. Rest it.” Then: “You’re in here; your son is in there…
The grandson enters: “Where’s Gran?
Just before they leave, J says: “Give me a hand with the washing up, will you.
He says: “Leave it, leave it – your name’s Willie not Silly.”
2 May 2012
Mum’s latest stay at the Hain House Respite Unit seems to go without a hitch – until the penultimate day. M phones the office the day before she is due come home to ask how she’s 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, Hain House 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 wasn’t ready.
This time they’ve 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 wasn’t going home after all!

In early 2012 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.
Respite care isn’t a normal part of the home’s provision but 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 can’t find one of those raised toilet seat contraptions that are a boon to the infirm.
The check-in process is disconcertingly haphazard – the carer in charge has no intention of asking about Mum’s 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 her 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, the carer in charge, 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 doesn’t 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 dementia unit, called Kitwood House. We ask if there were any signs of anxiety and he remembers that one day she said, “Why have they dumped me here?” He reassured her and says that “to my knowledge” he can’t recall any other such incidents.
But he doesn’t have Mum’s Care Plan with him (he can’t find it) and there doesn’t seem to be a Daily Report to which he can refer.
We find Mum in her room, slumped in a chair. She seems downcast. Although she doesn’t say ‘neglected’, she gives the impression that she 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 isn’t like the “other place” (Hain House). They aren’t keen, she says, to give her baths. She says the food is so-so.
She seems unaware that she’s going home but once it’s 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 washbag. 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 there was an ‘accident’. The knickers were removed and stowed in the drawer, while the pad was stuffed in the washbag.  She put the soaking trousers back on, with or without fresh knickers. To protect the cushion, she covered it with the newspaper.
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 Hain House.
Post Script: 3 months later June, the manager of Glen Rosa, called asking if we wanted to keep our place on their Waiting List.
She hadn’t heard about Mum’s experience - Ian had obviously kept it quiet.
17 August 2012
Glen Rosa isn’t the only home that has problems with smelly underwear: on unpacking her things after a respite stay at Hain House, 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 mother’s clothes were stained with food, her hair was occasionally untidy, her chin unshaved and her fingernails uncut.
One regular visitor was so upset that she took some clothes home and washed them.
The visitor reported this to management.
During our next visit, Mum’s clothing appeared fresh but her chin and fingernails were still unkempt.
Management was asked several times to ensure that my mother’s hair was not cut too short when she visited the in-house hairdresser. These requests were always ignored.
After her stays, I suspected that my mother’s dentures were never cleaned. During a 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 could refuse assistance and forget to clean the dentures. As a result, I suspect she may have worn them uncleaned, night and day, for 6 weeks.
The manager was challenged again but stuck to her line about giving residents their independence; she refused to accede to my request that the staff do the cleaning themselves.
11 April 2013
We got Mum ready to leave her home of 53 years for the last time. She seemed OK about going - said Hain House 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 leaving her for 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, "it’s 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".
12 June 2013
My brother makes a rare visit to his mother. He spends most his time writing a letter to the Hain House accountant, requesting a statement of her care costs. He scribbles a letter to me demanding a “statement of account re Mum’s Will”.  My Invisible sibling (this is only his 29th visit to see his mother in 5 years) must be getting anxious about his inheritance.
22 October 2013
Noella, the new manager of the Unit, has the day off.
This is unfortunate because we have an appointment booked with her.
Postscript: we have to wait a couple of days before we get an apology of sorts: "I forgot I had the day off”, is all she says.
It’s not a promising start to her managership.
28 November 2013
Mum’s Keyworker phoned - 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 says 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 M visited, Noella apologised for the fall last month. We aren’t 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 Hain House – “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 was very close to dying.
Her Invisible son was informed but did not visit his mother; nor did he contact the hospital.
12 January 2014
Mum was allowed to sit in a bedside chair for 6 hours – nobody bothered to move her or ask if she needed the toilet. Eventually, 2 nurses came to move her, with the aid of a hoist, back into bed. They were so inept that she 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. The Consultant 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 Mum’s nursing care.
23 January 2014
The Consultant and his staff do not give up on Mum – she pulls through and is discharged back to Hain House.
29 January 2014
For a while, Mum was low in spirits and appetite, largely because of her reduced mobility – they have to hoist her in and out of bed. But she quickly recovers 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. It’s Marge. "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. She comes back 10 minutes later. Mum tells her, "I've spilt something on my leg". Marge 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 for you? I want to go now".
We eventually get back after midnight.
30 January 2014
After this egregious piece of neglect by the home, we expect the manager to get in touch to apologise for last night's accident.
But there is no phone call.
Mum is back to top form, having forgotten all about last night’s 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 Hain House, the manager tries to ignore us. I say, as we pass in the corridor, "Noella, have you arranged for the District Nurse to visit?"
Yes”, she says, declining to mention the accident.
So we wade in with scarcely concealed criticism and she is forced to discuss it. 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 can’t 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, Mum’s door is firmly closed.
Then Sue brings in hot tea with a warning to be careful because it’s 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 Mum’s particular needs.
Postscript:
In July 2015 I posted a message on the Hain House Facebook page entitled “There but the grace of God…”, together with a link to a news report about a woman in a nearby nursing home who was scalded by a hot drink. She died in hospital. The home was heavily criticised for its failings by the coroner. Almost two years later, there was a belated response from Hain House, pointing out that the incident had not taken place at Hain House. The Hain House management evidently thought the scalding incident had nothing to do with Hain House. So I replied, mentioning the incident with Mum, hoping a lesson would be learned. There was no reply.
20 February 2014
My brother and Mum’s grandson visit. They stay an hour and a half. Kristina tells us later that she told him his mother was 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 Mum’s 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 Mum’s bathroom when she overhead my brother telling his mother it was so sad that I am just a cleaner.   As she stared blankly at him, he laughed uproariously. He went on to boast that his son went to Millfield, an expensive public school. Maureen says she nearly burst out of the bathroom shouting that her own son went to an ordinary school, got a First at Oxford and now has a lucrative job with a very large bank.
22 July 2014
Mum’s front tooth has snapped off. I ring round half-a-dozen NHS dentists but cannot get an appointment for months. So Noella 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.
Hain House 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 completely bonkers.
When I confront managers, including Noella, the Unit Manager, and Jackie, the future General Manager, about the problem, I discover it comes as something of a surprise to them.
Eventually, the manager follows the 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.
Postscript:
A year later, it’s obvious that Hain House have completely ignored their own policy – we still find letters, both personal and official, hidden away in drawers in Mum’s 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 N, yourself and your mother.
26 January 2015
Yesterday I asked Mum’s Keyworker to take Mum downstairs to a Burns Supper event on the afternoon of the 26th. She wrote it in the diary. M went along at 4:30 and found Mum in the toilet. She was wearing all yesterday's clothing. M took her down to the Supper but found that the staff there had not been told about her. There was no room for M 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 5 minutes on his pipes.
While talking to Mum’s 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.
house in the “interest of both N, yourself and your mother.
27 January 2015
My Invisible sibling has written with a self-serving, probably illegal, suggestion:
Since our interest only residential mortgage expires in a couple of years we are stepping up our mortgage payments by approximately 5x to close the gap. That is why it's important to sell or equity release [Mum's] house and since you claim you are the power of attorney then you can do this.  My retired lawyer friend S would be suitable to mediate although ultimately she would be acting in my best interests."
24 February 2015
My Invisible has telephoned Mum’s solicitor demanding a copy of her Will. Perhaps he’s worried that she may have cut him out of it. The solicitor refused the request.
9 April 2015
The home reported that Mum sometimes gets agitated at tea-times. Her GP’s answer to this was to prescribe Paracetamol on the grounds that it is pain from her knees that brings on the agitation.
Noella, 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.
Noella then 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, Hain House would have us endure this bureaucratic, politically correct, box-ticking rigmarole.
At Jill's suggestion, I produce a tea-time menu of things she likes (Welsh rarebit, scrambled egg, crumpets etc). I note that she doesn't like curry, hinting that there is no point in accepting an order for a curry. I also hint that the portions are too big (she is now 11st 11lb, having put on 2st in 3 years) and say that she is of the generation that does not like to leave food. I also say she prefers vegetarian food.
Jill 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, Clarissa 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 Hain House: the scald saga, the damaged furniture saga, the lack of tooth care etc, etc.
I mentioned Noella, 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 told Sandra we were happy with how the pneumonia episode of 2014 was dealt with. We said that agency staff are never briefed on Mum’s care needs but the regular staff have greatly improved their practice. We said all staff are excellent and that Hain House 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 Mum’s own choice.
Postscript:
When the CQC’s Report was published later in the year, only our favourable remarks were printed.
None of our criticisms appeared.
5 June 2015
I am presented with another Disclaimer to sign. This one is to countermand Health and Safety regulations, which apparently require Hain House to keep her bed low during the night in case she falls out. As she cannot get out of bed from such a low position, Clarissa 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
M arrives and takes Mum down to the lawns for Hain House’s 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 Hain House this seldom happens.
24 June 2015
Mum went on a barge trip on the local canal, a trip she’s 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 it was too late. M screamed then flung herself over Mum and pushed her head down. M 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 didn’t bother reporting the incident to SCAD management.
But I did.
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.
25 July 2015
We took Mum out for a meal at the Clevedon, our favourite restaurant. It was a shame the restaurant forgot to provide the birthday decorations they promised.
Mum looked at her cards and said of the Queen's card: "Well, I do send her a card every year!"
26 July 2015
Mum’s 100th birthday party went off a treat. Most of the other residents turned up and Hain House 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 Noella 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 birthday party.
We kept looking for the report until, at last, I phoned the paper. The local reporter said she had not received anything from Hain House. So I sent her the biography myself, including one of my photos and the article appeared on 6 August.
6 August 2015
M took Mum down to the home’s 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 M hadn’t taken her.
We wonder at Hain House’s 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 Mum’s from the Writing Group, called at the house to offer her condolences on Mum’s death. “Who told you that?” I asked, with mounting horror. It transpired a friend of a friend had seen the article in the paper 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.
Along with others from the Writing Group, Val has often promised to visit her old friend but has never done so.
13 August 2015
Paloma, the former manager of the unit appears. Mum says, to her face, "I know that fat lady from somewhere". Paloma isn’t put out: "It's true,” she says, laughing, “I'm fat".
15 September 2015
Clarissa 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-90’s event at the Clarke Foley Centre, M 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.
Noella and Kristina, a carer, take the other residents in the centre.
Mum is last to go but members of staff disappear into the centre and don't come back.
So M, with help from the driver gets Mum up and into her wheelchair and into the centre.
30 September 2015
Hain House alerts us 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.
Clarissa 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 M 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”.
Amelia 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 doesn’t.
M waits for her at Hain House until early evening.
During the long wait she confronts Jemima with Noella, the manager, in the background saying nothing. M accuses the staff of negligently misusing the toe protector tube - by keeping it on at night and maybe 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.
Noella 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.
M visits and talks to Jemima in the reception area, with Noella sitting nearby.
Jemima repeats the theory that the injury was caused by stubbing the toe, perhaps on some furniture.
Noella could have intervened and either agreed with the theory or rubbished it. Instead, she says nothing.
11 October 2015
Amelia 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 Mum’s GP, trying to find out what’s going on and what is being done.
We go to Hain House and find 2 tablets of her medication hidden in a pocket. Clearly, the staff don’t always bother to supervise residents when they dispense medication.
We mention this to Clarissa, who looks crestfallen.
14 October 2015
The District Nurse came to change the dressing. M 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 manager’s 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 at her computerin the background.
She never uttered a word.
15 October 2015
We were present when a Tissue Viability Nurse, the Head District Nurse, another nurse and Mum’s GP all crowded into Mum’s 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’ was the term she used. 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 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 Mum’s chair; M propped the foot up with pillows.
Once all the visitors had left, Noella made a reappearance: M met her coming out of the lift with Jemima. She said nothing but Jemima, who seemed 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
Naomi 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 hasn’t arrived – we’re truly in a state of limbo!
20 October 2015
We bought a post-op shoe and took it to Hain House.
Mum’s 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 had not arrived, this contravened the Tissue Viability Nurse’s 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 they had the notes in the office (to copy them?) She was careful to say the toe looked pink ("I'm not just saying that"). She said the antibiotics have just been stopped.
Noella was in the office as I left but ignored me.
21 October 2015
I visited to bring shower consumables. Mum’s 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 Clarissa told me she thinks the toe was infected but successfully controlled with the antibiotics.
This was not what the District Nurse had told us.
23 October 2015
Clarissa told us (with pride) about last Tuesday’s showering.
So M laid into her, telling her that the Nurse's instructions were that she should not be showered over an open drain without protection. This seems to come as a surprise to Clarissa. But, she says, she was sitting on the commode seat. That's not the point, M retorts. She goes on: "This shouldn't have happened in the first place should it?" "No", says Clarissa.
The District Nurse has visited, writing in the diary that she couldn’t find any dressings so had to make do with what she brought with her.
A nurse who comes to dress a wound but doesn’t bring any dressings. Hmmm!
25 October 2015
We learn from a resident that they never see Noella. 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.
30 October 2015
I phone the General Manager to ask how the Registered Manager is getting on with a Report I requested on 16th October.
She had been instructed to undertake a “thorough investigation”.
The General Manager get 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. She 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 a smart 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.
Noella and her staff completely overlooked this.
3 November 2015
Noella 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.
There’s a hint here that disciplinary action might be taken against the staff concerned.
Noella also complained about the use of the word “manky” – she doesn’t want her staff using such language when talking to clients.
Unfortunately, I did not get the email because I was visiting my mother at the time it was sent. The manager knew this - she saw me passing her office 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 Mum’s chiropodist. He says he was told the toe got caught on a wheelchair. I tell him the nurses believe it’s 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 and no acknowledgement of my last email 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 Hain House that their 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
Noella phones to invite me to a meeting with the Investigating Officer. I tell her it’s 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 Hain House’s communications problems.
He doesn’t seem to get it.
19 November 2015
We arrive at Hain House, 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 Kristina was on duty. She’s 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. Kristina is, we think, the only carer who bothers to sit and spent time chatting to the residents.
We have an hour’s meeting with Noella and Terry to discuss my Complaint with a view to finding a resolution ‘going forward’.
He keeps repeating that he doesn’t know exactly what’s gone on because he’s 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. “I’m 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 what’s said, and take notes.
I mention a specific instance when a nurse announced her arrival and Noella simply told her to go to Mum’s room, unaccompanied.
Noella, who hasn’t said a single word up to now, suddenly pipes up, saying that particular incident was a one-off. It won’t happen again.
It’s 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 Noella.
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 Nurse’s 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 Noella but she doesn’t contradict me.
Later, I say, M got Jemima to confirm that she’d understood all the instructions.
Noella 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 dentist’s visit, another unaccompanied one. After the treatment, the dentist went in search of someone to instruct on Mum’s future dental care. Her instructions worked for a while but soon lapsed.
Terry asks if we’d mentioned it to anyone. I tell him that yes, we reported that Mum’s breath stank on several occasions. Clearly her teeth were not being brushed. He scribbles a note in his book.
And another thing…” – M is warming up now. She tells the meeting how we once found a couple of tablets in Mum’s pocket. She’d been handed medication and nobody supervised her. We’d immediately reported it to a senior carer.
Terry looks stunned. They didn’t know about this; it hadn’t been reported. Noella says nothing.
And that is that. We leave the meeting doubting if anything much will change.
Shortly afterwards, we meet Mum’s GP, who’s come to check up on her toe. “She’s 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 isn’t hers and that nobody tells her anything. We were pleased to see that Marge was with her when we arrived, talking gently to her, pointing to the pictures on the wall (“Oh yes, that’s me and my husband; those are my boys”) but it didn’t 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 Mum’s underwear drawers.  There are plenty of bras but none of them belong to her. The one she’s wearing isn’t one of the sports-style bras we bought her.  It’s 5 years since I first complained about missing laundry and Hain House still hasn’t sorted the problem.  I send Noella 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, Hain House 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 manila envelopes – those detailing their fees – direct to her.  When I complain to Noella about the latest transgression, she says such deliveries happen “without my knowledge”. 
Not her fault then.
1 March 2016
Now and again we find Mum’s room pretty chilly, usually because someone has turned down the thermostat.  It’s obviously a member of staff who thinks the room too is too hot.  Once again, I complain to Noella.  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 it’s 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 Naomi, 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 -
Kristina - 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
Mum’s 101st went off like a dream. We went to the Clevedon again and had an afternoon tea.  This is lovely,” she declared.  We’re all together here. But there’s one missing. Now where’s that boy?
She spoke incessantly about the economic situation.  As she was cutting the cake she remarked, “the young ones can’t get jobs so perhaps we shouldn’t be eating this”. 
Back at Hain House 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 brother.
21 Nov 2016
Mum’s GP organised an assessment by the Community Mental Health Team because there have been recent incidents involving verbal abuse of staff and residents. Her 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 arrived and started the interview by asking Mum where she thought she was. She was soon being 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 spare bedroom adjoining her room at Hain House: she indicated the bathroom.
At this, Donna 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.
Afterwards, Donna discussed her findings with Marge, one of the care staff, and me. She 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 had really received training in the care of dementia patients, that training must surely be defective.
1 February 2017
Hooray! Noella 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.
We’re 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, “I’ll find out for you.”
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. “There’s not much to do now until 4 o’clock. You might as well take it easy.”
Why didn’t she 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 to Dr S: “You tell me; it was you who phoned me”.
He had not examined Mum himself – that had been done by Jemina, the Community Matron, who reported a crackle on her left lung.
Later, when I called Hain House 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 Jill.
Needing to find out the truth, I asked that Dr S visit Mum to examine her himself.
When he examined Mum two days later, he confirmed 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 didn’t he admit it and tell us what went wrong?
30 April 2017
We’re told that lots of Hain House residents and staff have colds.
There’s one of those anti-bacterial hand spray machines at the entrance to the unit. But it’s been empty for some time. Clearly nobody, including the staff, bothers much about infection control.
It’s mid-afternoon when we arrive. Three carers are taking it easy in Reception. The telly in Mum’s room is blank and she is sitting there polishing and repolishing her glasses. She looks unwell and is rather subdued. There’s a cup of cold tea on her table. She has taken only a couple of sips before forgetting to drink. She doesn’t know she should be keeping herself hydrated. We have asked the staff to make sure she drinks enough, but right now they’re 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 they’re out of reach she folds and folds a paper napkin. She’s bored. She lacks stimulation.
This is not the place for me,” she tells us. “I’m going home tomorrow”.
8 May 2017
The hand spray machine was refilled 3 days ago.  Great!  But Mum has already caught the cold bug that’s raging at Hain House.  Jemina, the Community Matron, examined her today and told us her chest infection is bad. It’s the point at which, she seemed to suggest, Mum would usually be admitted to hospital. If she stays at Hain House, 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. We’re going down the palliative care route. 
I hurried to her bedside, finding her coughing and hot. She was watching Nanny McPhee through half-closed eyes. “It’s about a man who loses his wife and his children are very bad,” she informs me. Then, “I don’t know why I’m ill. It’s not winter yet. I need to get better because I’ve 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) at the bedside.
During the night, she gets turned every two hours to prevent bedsores developing. Jemina always apologises for waking her up. “That’s all right,” says Mum, “"You have to do your job, I don't mind. I’m 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. She’s 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 – they’re grown men, married,” he contradicts.
Mum looks confused for a moment. Then: “I must look after them,” she persists. “I don’t want them to get girls in the family way.”
But they’re married men….”. The good doctor doesn’t realise she’s talking about her younger brothers in the 1920s and 30s, rather than her two sons.
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, “I’m not ready to die yet.”
Yet when M 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 she’s there permanently, an acceptance that she might not be able to go home. 
16 May 2017
Mum told the carers this morning, “I don’t 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, “I’m 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, waking someone every 2 hours makes them very tired. Rather that than get bed sores, I say. And, I go on, Mum hasn’t got a working air mattress yet.
Diane, the District Nurse visited. She said 2 hours is the required schedule - no ifs and buts. Jill produced 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, Clarissa pops her head in. I challenge her about the delay and mention the District Nurse’s 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. It’s not in her room. Clarissa 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. Let’s 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. “I’m not finished yet,” she announces.
20 May 2017
The turning of the patient is every 2 – 3 hours, which seems fine. But now and again Mum gets red marks on her pressure areas so they have to be vigilant. What would help is a working Airflow mattress. She does have one, delivered over a week ago. But there’s 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 don’t seem that bothered about chasing it.
Postcript: It arrived 3 days later.
I didn’t ask for this. I hope I get better,” says Mum.
21 May 2017
In spending entire days (and nights) at Hain House, we see that the 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. There’s 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. It’s 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, had disappeared. Eena is hastily 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 Hain House 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 Mum’s dressing table. Thing is, it has someone else’s name on it.
Oops.
31 May 2017
The District Nurse sent across a pair of crash mats to put on the floor beside Mum’s bed when there’s 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 Hain House 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 Mum’s 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 morning’s 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 M 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 that".
The good doctor looks momentarily 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 Hain House.
27 June 2017
The eyes have it – or maybe not
Mum has sore eyes she is constantly rubbing. Dr S prescribed wipes, moisturising cream and eyedrops. While the eyedropper bottle, as the only 'proper' medication, found its way onto the medicine trolley, the tube of cream appeared on her bedside table and the wipes disappeared into a drawer somewhere. 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 Amelia, who thought it was for applying to Mum’s 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.
Wouldn’t it?
So why weren’t the staff aware of them, we wonder?
Later in the morning, Gabriel, a lovely man, an agency-supplied carer on his first assignment to Hain House, 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
The 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 can’t get out of bed because of her weakened condition – she’s 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 Hain House by occupational therapists sent by Social Services. However, Bradford Council have refused to provide one, citing government cutbacks.
Hain House have plans to employ their own occupational therapist across the group’s homes. But not yet. Jackie, the CEO, refused to book a private occupational therapist on a one-off basis and told me to get one myself.
Thanks Hain House! Thanks Bradford Council!
When Dr S heard about the problem, he put in a referral to the NHS’s Community Occupational Therapy Team. But the good doctor was rather pissed off, if that is the correct medical term, when he was told they would not be attending.
This is because care and nursing homes are required to assess a resident’s mobility themselves and to provide the necessary equipment.
Hain House should not be asking me, a resident’s 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.  A mobility assessment costs £160.
I sent an email to the CEO, seeking clarification.
Jackie did not reply, instead passing my enquiry to Nellie, 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”.
Nellie went on to inform me that Hain House would, after all, pay for my mother’s mobility assessment. On condition that I used their own OT. 
But poor Nellie hadn’t been keeping her ear to the ground – she wasn’t aware that Eena had already given me approval to engage my own OT and confirmed that Hain House 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?  I’ve 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. There’s a photo of Andrew, one of the residents, demonstrating it. Thing is, Andrew doesn’t have dementia.
21 July 2017
The Invisible sibling visits
N announced a few days ago that he and his wife, J, would be visiting Mum just before her 102nd birthday. He hadn’t bothered to enquire after her health since being told 10 weeks ago that she was ill. 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.
On the day of the visit, our covert microphone picked up the following snippets:
J: “Mum is in bed. We’ll need to ask has she had an infection or something.”
She speaks to Clarissa, asking if they can take Mum out for a walk.
Clarissa: “No, she’s not weight bearing. She’s been really ill.
J: “I know.”
Later, N goes to the office to talk to Clarissa.
He reports back to J: “Apparently she had a chest infection.”
They go into town 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, S. He’s mad. He’s bonkers.
Mum: “Well I never.”
21 September 2017
CHC
The NHS called a meeting to assess Mum for CHC funding (Continuing Health Care). A nurse presided. Her social worker was also there. It was done very efficiently and we were told the likely outcome – no funding.
Here’s the thing, though: we’d 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 everybody’s time.
1 October 2017
Mum had a dressing on her shin today. Clarissa told me she’d bashed it on the hoist as she was being lifted. It’s 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 doesn’t have particularly long legs. It sounded like an excuse so I observed other members of staff using the hoist.
I saw that they didn’t use a pillow. As Mum’s legs lifted off the floor, one carer kept her legs out of harm’s 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 Mum’s legs were doing when they lifted off the floor.
1 November 2017
The wonderful Dr S, Mum’s 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: “I’m your doctor.”
Mum: “Oh, I know you’re not a doctor. You’re a door-to-door salesman. I don’t 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.”
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 is code for ‘I haven’t got a clue but I’ll 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 Jemina, 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 Mum’s 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 Hain House manager and told my consent was needed for the treatment.
So I phoned the practice but couldn’t speak to Mum’s GP because she wasn’t at work that day (she works just 2 days a week).
Another doctor, Dr C, was asked to call me.
She didn’t 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 patient’s best interests.
But NHS and GMC guidelines state that clinicians must consult with a patient’s relatives.  
Mum’s medics ignored this step.
1 February 2018
The aftermath
3 days after prescribing the controversial antibiotics, Dr C examined Mum and found she didn’t need them after all.
The course was cut short.
At a meeting with Mum’s 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.
The GP said a chest infection is a minor ailment and they don’t have time to consult relatives about such things.
I repeated my expectation that we wanted to be consulted but received no reassurance.
It seemed to me that as soon as the good Dr S had left the practice, his successors chose to ignore the treatment plan (Care Plan) we had agreed.
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, “I’ve not been drinking, you know".
29 May 2018
When M 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 Mum’s window. These restricted the opening to a mere 2 inches. It’s 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 Hain House, can get nowhere near the window because she’s wheelchair-bound.
Since Hain House’s management hadn’t 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 Mum’s 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
Mum’s 103rd birthday party went well. She was relaxed, smiling for photos and for a presentation by Jackie. The outgoing CEO crouched in front of Mum’s 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.”  Eena’s boisterous children entranced her. With some assistance, she blew out the candles on the cake. She said, “I’m over 100. You’ll be that age soon”.
23 August 2018
I am pleased that Fenella regularly takes Mum for a push around town. When she’s ready to return, she calls for assistance to get the wheelchair back up the steep road to Hain House.
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 we’re concerned. M 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 had said she was a bit too businesslike, we found 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 Mum’s 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 doesn’t notice.
But she does notice. One day, while M was cutting her nails, Jaqui, 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 Mum’s room has disappeared. A broad, blank, grubby wall confronts the visitor entering her room. It’s hard to say if she notices the change or feels that the room does not belong to her. She did, though, remark: “I don’t know who’s 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 we’d been consulted about it.
5 Nov 2018
In her 5 years’ residency at Hain House, Mum’s 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. Earlier in the year, at our instigation, management offered to redecorate the room. But for health and safety reasons Mum would be required to move into another room for at least 2 days until the smell of the paint dissipated.  We declined the offer: the general advice was that the risk was too great and the disturbance might upset her too much.
Last week, Eena announced that they could paint the room with 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 didn’t 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
Clarissa phoned in the evening saying Mum was angry and paranoid and would we come over and try to calm her down. This was serious – Hain House 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.  I’ve been trying to escape but they won’t 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. Hain House tell us they will ask her GP to prescribe Loprazolam to help with her anxiety attacks.  I ask Clarissa 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 seems an over-optimistic strategy.
10 Dec 2018
We spend over an hour with Clarissa reviewing the current edition of Mum’s 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.  Hain House will have to ask their pharmacist to cut the tablets in half. Odd, that.
11 Dec 2018
Clarissa phoned to tell us my brother 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, Clarissa, 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.  Then he abandoned her and vanished.