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Worried mum will get kicked out of care home as they "don't know what to do with her"

LesleyannW

Registered User
Jul 29, 2013
3
Hi

It's my first time posting. I'm very stressed and at breaking point quite frankly and just need advice I guess. I'm sorry this is so long, but I don't know who to turn to and I just need people to understand.

A bit of background. My mum started showing the first symptoms of dementia at 59, got the official diagnosis at from the doctor at 62/63 (like getting blood from a stone). She's now 67. Her partner has cared for her at home all this time and done a sterling job. I live 160 miles away from them and have done since 2010. I've visited for a weekend every 3-4 weeks throughout all this time (I’m lucky enough that my workplace allows we to work full-time but 5 days over 4, which means I can go visit my mum Friday to Sunday so I'm there for longer). I've also skyped them every week for the last 3 years, so mum can see me and just to check up on them.

Anyway, at the beginning of the year I started getting concerned about my mum's partner's ability to look after her. We've coped with her decline gradually over the years, just adapting as you do, but she just got a little worse at the start of this year and I was particularly concerned about her hygiene as she started to have little accidents, and I thought this was the start of her becoming incontinent. Her partner was insistent on keeping her at home so I started going up every fortnight. Every visit is not just a pop-in-how-are-you kind of thing. I stay with them, clean the house throughout, bath mum, do her hair, take them out etc etc. I'm also mum's financial deputy so there's a lot of sorting receipts and shopping for the things she needs.

As a side note, my mum's family (her sister, niece and her other daughter, live a few streets away from her all in the same village, just a 5-minute walk. Sadly, they've had nothing to do with my mum for the last 5 years because they absolutely cannot stand my mum's partner. This time last year we fell out because I told them the truth, that their behaviour is disgusting. Long story and much more to it, but it resulted in them starting to take mum out for an hour once a week. It's not been consistent, sporadic at best, but it's something, it benefited mum and gave her partner a little break. I've been ostracised by them but it's worth the sacrifice for the benefit it brought mum). So in a nut-shell we cannot rely on them for help.

Anyway, mum has been getting gradually worse over the years, but on the whole she was ok. We've always been able to make her healthy, keep her entertained and happy (and I can make her scream with laughter by simply blowing raspberries on her neck, smothering her with kisses or dancing/singing stupidly to her favourite songs) and while she's not been able to say more than 2-3 words at a time and can go weeks between saying those few words, I was always able to understand her body language and gestures as to what she wanted. Interestingly, throughout all of this she's always slept for England. If she gets less than 12 hours she has a bad day the next day. She can sleep up to 16 hours a night and we've always been of the opinion that it must be what she needs, so we let her have it, we don't drag her up out of bed at 9am just because it's the socially accepted thing to do.

In mid-June this all changed drastically. Mum went on a sudden nose-dive decline. Massive problems with incontinence. Terrible and constant anxiety. Not recognising me most of the time. And wandering, not only around the house as if looking for something, but leaving the house and going down the street (something she's never done). And worst of all she stopped sleeping. This is what broke her partner in the end. Sleeping tablets prescribed by the dementia nurse had no effect. Mum was just constantly wandering in and out of the bedroom and trying to wake her partner up, taking the covers away, poking him. Because he got no sleep he became unable to care for her, or function in general, and we were suddenly in a position where we had to put her in residential care. Quickly.

I've been coming to see them now every weekend for the last 3 months. At first to find suitable homes, and since finding one moving her in and then going each week so help settle her (not to mention support her partner for who the bottom has dropped out of his world - suddenly completely alone).

She’s been getting worse and worse since going in the home. Not sure if it's part of the decline she was already on, or if I've made it worse by moving her.

Anyway, she's become what they call a 'walker'. She never stops or sits down. As a result, just after her first week her legs were red and swollen. Her lower legs rock hard and her skin scaling. The home told me that this is because she won't sit down and put her feet up. Her feet stink. Her sleeplessness has continued and the most sleep she's had in one go has been 4 hours. And that's rare. Most of the time when they finally get her to sleep she's up an hour later and then wanders through the night. And the anxiety is worse, she walks around looking terrified and stressed. Her feet now have the most horrific sores on them from blisters as a result of the wandering. She's been on antibiotics for an infection in them too.

They increased her sleeping tablets (can't remember the name) in dosage and frequency and it's done nothing. Last week she was prescribed a new dementia drug, memantine hydrochloride, with the hopes it will address this constant anxiety that's driving her.

Last Sunday after getting home I received a call from the home saying they were really worried, she looked really distressed and spaced out, more than usual, she was walking into things and stumbling around. They were also concerned with the feet sores and her legs and suspected diabetes so had arranged for a blood test the next day.

They thought she was over-medicated so have taken away the sleeping tablets. During the week she was also prescribed another drug for anxiety to be given on an ad-hoc basis.

I arrived on Friday and they told me that she was in a real state. She's worse now than when she was on the sleeping tablets. She's now unsteady on her feet, though she still won't rest and has become a 'fall risk'. They said she looks like something from "the living dead". They told me that just before I arrived she’d just been found 'sleeping' on the floor. It's clearly not the sleeping tablets as they are out of her system. They suspect she is literally so tired from lack of sleep that she can't stand up. Yet her body won't stop moving. Or perhaps her mind won't stop moving her physically exhausted body.

My mum's partner and I spent 4 hours on Friday wandering around with her, trying to get her to rest. She sees a chair, sits in it and 10 seconds later she is off. She's young and fit and bloody strong and you can't force her. She holds on to your hand so tight it's painful and drags you around the corridors. We kept taking her into her room. She'd lay down and be straight back up. Up and down, up and down. Every now and then I could get her to close her eyes and she'd nod off by stroking her hair and face (something that's always been a sure-fire way to relax her) but it's for no more than 5 minutes at the very most. And she then sits bolt up-right, frightened, anxious and then she's off. And she does look like a zombie. She's staring, hardly blinking, not making any kind of eye contact with anything. Staring freakily up to the ceiling, her arms still held upright, wanting to hold someone’s hand even when laid down. Several times over the weekend I've been able to get her to nod off for a few minutes by physically closing her eyes, like you see people do to dead people in the movies. This is the most distressing thing I've ever seen. To see your mum in this state. This will haunt me to the end of my days. I’m not actually sure how my mum is still alive through all this sleep deprivation.

Several times on Friday walking around she started to collapse and we had to drag her into a chair. If she'd have been on her own she'd have fallen straight over. We had to spoon feed her on Friday. She's never needed help with food but she just wouldn't/couldn't do it. The staff were busy spoon feeding other people and I assume they let us struggle with mum simply because we were actually there. Had we not been there, I assume they would have tried to get my mum to eat, but they seemed quite happy to let her just keep wandering off having not eaten anything. In one of the sitting rooms at one point she started to collapse, I shouted out as I was trying to steady her and get her to a chair, and one of the staff just sat there and never lifted a finger to help, she just carried on filling out her paperwork.

When we arrived on Saturday they told us she fell 6 times after we left the day before, another 2 times in the night and four times in the morning. She's covered in cuts and bruises (all over her body), a new cut on her face had appeared and a massive bruise on her hand/arm on Saturday morning. The staff's words were "we are seriously concerned for her safety, but we don't know what to do with her. We are out of ideas"

Turns out they've not given her any medication for a week and have refused to give her the new anxiety tablet because no one is willing to take the risk of giving medication that has a side effect of making someone drowsy and prone to falling to an already prone-to-falling patient. I asked them to call a doctor. They didn't think anyone would come. They called out-of-hours social care who told them to give her the medication and 1-2-1 her. The staff said they literally don't have the staff to 1-2-1 my mum. Eventually a doctor came, examined my mum and his only advice was that the staff must trial the new drug and we'll adjust the dose accordingly. He seemed annoyed at their refusal to give the drug.

I asked the doctor what, if like the sleeping tablets, it has absolutely no effect. I got a very hazy answer of we'll have to cross that bridge when we come to it.

The care home said it was amazing that the out of hours’ doctor came at all. The last few weekends they've refused to come. They just say give tablets and watch her. It's almost as if my mum has to fall and have a major accident BEFORE something is done to help.
I’m like surely there is something they can give to actually knock her out so she rests and her body can catch up? If she falls and breaks her hip and needs 6 weeks of bed rest how are they going to do that? Keep her tranquilised and unconscious?

I've asked the staff what else I can do, if anything. They have no ideas. They are so worried for her safety and that she might fall and "smash her face in" (actual words used) but don't have anyone to watch her all the time. I've asked if they have contact details for external companies where we can pay for an additional person to come in and 1-2-1 mum. They said "not really". All I get is "we're out of ideas".

Again all 4 hours of our Saturday visit were spent trying to get her to sleep and rest. Whenever dinner times comes, they guide everyone into the 3 dining rooms and wheel those in wheel chairs in. No one comes for my mum; they continue to let her wander. But I don't know if it's because we are there and they expect us to bring her in. When we are not there do they go find her? I assume so. Staff very off-handily comment that "she wanders in and sometimes sits down, we just let her wander" I'm now concerned she's not eating and drinking properly. Yesterday dinner time we couldn't get her to eat a single thing. I’m hoping they got something down her in the evening.

Mum has been there 5 weeks now. Next week is her 6-week review where they decide if she can become a permanent resident. When she first had her assessment and went in they said they would never take someone in the first place if they thought there was a chance of them not passing their 6-week review. They also said the only reasons for not passing a review are 1. if the family is not happy with the level of care and 2. if the patient suddenly declines to a state where they can no longer meet their care levels. To be honest both of those boxes have been ticked. I feel as if they are telling me they cannot cope with mum or look after her. I feel like they are asking me for advice on what to do. And I'm stumped too. The reason I took her to the care home in the first place was because we could no longer cope and I thought it was time to take her into the care of the ‘experts’.

I asked two of the deputy managers if this means mum could fail her review. One gave a very hazy 'not sure' answer. The other said Yes. Then immediately realised what she said, back tracked and said "we just need to try concentrate on getting her through this week". I asked if they had information, contacts and support on where I could take my mum if she failed her review, because we cannot take her back home. Again the answer was a hazy "we don't know".

I'm not happy that they are so short staffed, they that don't seem to be able to even provide suggestions/solutions such as when I say ‘can you get someone external in, I’ll sort the payment no worries’. I'm also concerned about hygiene. Many times I've arrived and she's soiled herself and smells (she wears incontinence pants) I've had to run around trying to find a member of staff to help me change my mum and get a key to her room to get clean clothing. Often I've found 3-4 of them sat in the office (apparently doing nothing - I know that's just how it appears, I know they are rushed off their feet and also entitled to breaks). But how long until my mum had been discovered and changed?

This week I found her teeth on her basin in her room all caked up and dried with food. Apparently they took them out the night before. I was thinking why didn't someone clean them at the time? Why didn't someone put them back in this morning when she got up? I went to clean them and discovered her tooth brush is still brand new! I sent her in there with a brand new tooth brush, but it was clear it hadn't been used. Her tooth paste had not been used once either. They must be going for the steradent/tooth bath option I thought. I opened up the tube of steradent and one, perhaps two tablets have been used at most.

I know it's not easy to get a dementia patient to remove their teeth to clean them every day, I've struggled with this myself, but to have not had her teeth brushed once in 5 weeks is terrible. Short staffed or not, what am I paying £550 a week for if they are not making sure she's eating, has clean pants or has her teeth brushed.

They've asked if we can go in and 'sit with her' every day over the weekend, which is what we do anyway. I know they are short staffed, but the reason we took her in was because we can't do it anymore. I'm paying all this money to them and having to actually provide the staff too in the sense of myself. I and my mum's partner both have a bad back. And holding my mum up all weekend has already set us both off. Yesterday evening he was in so much pain he got on the floor and asked me to walk on his back, just to put it back into place. This is ridiculous.

I will be looking for other places in the coming weeks regardless, but my problem remains: If these guys can't look after her, not only from lack of staffing but because they just don't know what to do with her any more, will other care homes be able to handle her?

While I'm not happy with the level of care there, will it be the same everywhere else? After 5 weeks they know my mum and the state she's in. Is it fair to move mum again when she's in such bad shape? Would another care provider be in a place to help more than people who know her situation? Would we start again from square one with trying sleeping tablets etc at a new home? Should I move her now or wait until they’ve (hopefully) sorted her physical problem? Will another move do more damage right now?

Surely my mum is not the only dementia patient in the world an extreme as this?
Has anyone else ever had a loved one this ill? Or been in this situation with a care home not knowing what to do? Whilst I’m thinking of looking for other homes, it’s still terrifying to feel that next week they may kick my mum out effectively. And I know it won’t be literally a case of them putting her out on the street, but when even the experts can’t offer help and advice on where to go next, what do I do?

I'm so sorry, and thank you to anyone who got this far.
 

Beate

Registered User
May 21, 2014
11,902
London
I'm horrified. Move her - now. As soon as possible. 5 weeks aren't a long time but long enough to see the staff there are utterly useless. Your mum deserves better. What kind of care home is it? You migh need a specialised nursing home or EMI unit and you must tell them everything at the outset about her restlessness. Ask the right questions. What is their staff ratio? How do they deal with wandering, extreme behaviour, personal care etc? Don't worry about nice curtains or a big room - what counts is a homely feel, no bad smells and kind, capable staff.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,793
Yorkshire
hello LesleyannW
my goodness, no wonder you are worried
I'm so glad you've found this forum to let off steam and to gain some support

your post is long and detailed and so full of concern

my dad is living in a care home on the dementia floor - there are wanderers there, who hardly stop, but always look cared for and there are residents with challenging behaviours at times, my dad has been one - if a doctor is needed, one is called - when dad had a meltdown next day the deputy manager had organised a review NOT to consider him leaving but to look at how the staff and outside agencies could support him

so sorry to say this - personally, I'd be looking to move your mum, the staff are clearly out of their depth and don't seem to be calling in support - there should be a CPN involved at the very least

I'm assuming that your mum has been tested for a UTI, which can cause havoc

I'm trying to think what I would do - I'd contact Social Services, her GP (she must be registered with someone and a doctor should be out to see her in the daytime to follow up the after hours calls), her consultant - I'd be asking the manager what s/he is doing to seek support; not good enough to say see how it goes
I too don't understand how the home can not administer meds that have been prescribed - but it's also not enough for a GP to effectively 'tut' and leave it at that
and I'm wondering whether with such extreme behaviour, your mum would qualify for CHC funding which would help with getting her the support she needs

so sorry, I don't feel I'm helping at all - I just feel your mum is being let down by staff who should be proactive not expecting you to take the brunt of what your poor mum is going through

I hope other members have some thoughts for you

do keep posting here - I hope it helps

best wishes

PS wholly agree with Beate
 
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LesleyannW

Registered User
Jul 29, 2013
3
I'm currently looking for other homes for her regardless of the outcome of her review.

Where she is at the moment is a dementia specialist home. In fact the first time I visited the place and said I was there to see about a place for my mum, they wouldn't even let me through the door before I'd answered the question "Does your mum have dementia because we are a dementia specialist home?"

My decision to take her there was based on the fact that it ticked all those boxes. It's a tiny place with a homely feel. The staff were smiling and happy and caring. And there were plenty of them, on all my visits. I can't remember the exact ratios, I've got it written down in her notes somewhere (though I do remember there are only 2 at night for 27 patients) but I was happy with it, it seemed very good. There was no smell whats-so-ever (unlike some places we checked out). It was built in the 70's and was a little rough around the edges, in the sense that you could see some of the rooms are due a lick of paint, but I put that to one side. As you say, a small room and nice curtains are not important. What is important is a caring knowledgeable place, so I overlooked the scuffed skirting boards. And the questions I asked at the time seemed to indicate I had found just that, a lovely place with caring staff.

It just seems like now they are suddenly understaffed, they are now turning round and telling me this is the case. Reading between the lines I suspect they were on the limit when my mum went in and if my mum hadn't developed these extra problems they would be fine, but as she has deteriorated they don't have the staff levels to 1-2-1 her. It's just not helpful that when I suggest getting external companies to come in they throw their hands up in a "no idea" sort of gesture

Moving to a new home I would of course tell them everything. It's not that I didn't tell this home everything about her restlessness in the first place and they came out to assess her so they saw how she was. Her restlessness was very minor when we took her in. The situation as it is now has developed since she's been in there.

I guess I'm just worried she is so bad that I will get this answer anywhere we go. It's not that I thought I would stop worrying about her once she was in care, but I did think I would worry less. After all she'd be with the experts. So i'm just so shocked to have them turn around saying we're not sure what to do.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,793
Yorkshire
hi LesleyannW
it's so hard, isn't it - we do our best to find a safe secure place for our parent, trust that things will go well and, as you have done, monitor the situation carefully
I agree that the home's inability to reach out to other agencies/support is the most worrying part - they ought to have contacts to go to when they themselves need help
I hope your search goes well - you will have a different perspective now on your mum's needs and much more experience of what you want to see in place to support her
do keep us informed
best wishes
 

Rageddy Anne

Registered User
Feb 21, 2013
5,984
Cotswolds
LesleyannW...sorry you're having such an awful time. Don't know what to advise, similar situation here, but nowhere near as bad as yours. If you can find mother a different home with a more helpful attitude, moving her seems the best option.. Where she is does seem to have a bad staffing problem, and a strangely unconcerned GP. Just sending you sympathy and lots of hope that you find somewhere better....
 

Patricia Alice

Registered User
Mar 2, 2015
179
You need to definitely move your mum.

No there are many good homes out there, you will just need to do your homework though, read reviews, visit the homes without prior warning, do not make an appointment and ask as many questions as you need to. A good home will be happy to answer any questions. Also read the CQC report.

What I have read of your story should not be happening.

Good luck
 

LesleyannW

Registered User
Jul 29, 2013
3
Thank you for the replies so far.

Someone mentioned a UTI - yes she's been checked out for that last week.

The CQC reports are helpful, thank you, the place my mum is at currently actually had a good report, one of the reasons we were initially pleased with it
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
Hi Lesley, welcome to TP
Well it sounds as others have said like she's in the wrong place. Maybe when she went in they could cope but either because of the UTI you mention or a sudden decline they no longer can.
I'd try and work with them and get her into somewhere more suitable, the last thing you want is she wants is to get "kicked out" as you say.
Just a few things I've picked up on, it depends where you are but the £550 a week you mention is a lot less than the average cost of the care that would meet her needs, one to one has been mentioned as a possibility, that is eye wateringly expensive.
My wife is a "wanderer" although she sleeps well at night and so just has a pressure mat next to the bed in case she gets up. Another resident there doesn't sleep for days and his wife is having a battle to get the home/doctor to use sleeping tablets, the home feel they don't help and the GP cites addiction as being the reasons why not.
From all that you've said I'd be nice to the place she is while looking for somewhere more able to meet her needs. It sounds to me like she's in a residential care home that can cope with a bit of dottiness not somewhere geared up to help you.
The kind of place I'd look for would be Elderly Mentally Impaired (EMI) or EMI nursing.
K
 

care2share

Registered User
Jun 14, 2015
92
London
Thank you for the replies so far.

Someone mentioned a UTI - yes she's been checked out for that last week.

The CQC reports are helpful, thank you, the place my mum is at currently actually had a good report, one of the reasons we were initially pleased with it
Hi LesleyannW
What a dreadful time you are going through. A move does sound the best option. But saying that, do you actually have that option? Did I read in your post that you are Deputy for Mum, and if only for finance and not Health And Welfare, would any move have to be approved and given permission by the COP? I'm wondering how quickly it could be done. Perhaps this is not the case and you are free to move Mum to another care home. Could any TPer advise? And as mentioned in an earlier post, when care is this difficult, it would be well worth looking into CHC. Good Luck, you so need it.
 

canary

Registered User
Feb 25, 2014
11,655
South coast
Mum has now lost her mobility, but before that she was walking around most of the night, Ive noticed that there always seems to be at least one resident who is always "on the go" but the staff seem to cope.

Unfortunately there there seem to be an increasing number of care home who claim to be specialist dementia homes, but cannot cope with common dementia problems. When you are looking at new homes it would be worth asking them what problems they would not be able to cope with. This might give you an indication whether it would be a suitable place.
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
Hi LesleyannW Did I read in your post that you are Deputy for Mum, and if only for finance and not Health And Welfare, would any move have to be approved and given permission by the COP? ... Perhaps this is not the case and you are free to move Mum to another care home..
A bit confused, before the CoP get's involved someone has to ask them to.
So if, say I wanted to move my wife tomorrow, the LA/SS could go to the CoP if I wanted to move her to some dump that couldn't meet her needs to save money or that didn't meet the standards, wasn't safe or something they could go to the CoP, but until someone asks the CoP to get involved be it me, the LA or SS then they won't even know about it.
Some of the section 3 patients in the secure unit my wife was on used to go to "a well known burger chain" with a golden arch or the park, my wife is section 3 and I can take her out of the home when I want although the staff do need to be told and do a little risk assessment.
Now she's in an EMI home as far as I'm aware I can move her tomorrow if I want although this may be complicated by her section 117 funding so I may need to involve the LA SS as they're paying.
I haven't read anything that says Lesley's mum is anything other than a voluntary resident/self funding (sorry if I've missed anything but I think I've read it all) so it's entirely up to them what happens and where she goes.
K
 

Red66

Registered User
Feb 29, 2016
363
Hi Lesleyann, I am sorry to say this and it very frightening but has anyone suggested your mum go in to a mental health unit to be properly assessed. My Dad was sectioned, he was in there for over 4 months and he was trialed all different dementia drugs. General GP's aren't specialists in dementia.

When dad was sectioned he became entitled to aftercare 117 which meant the EMI nursing home was funded. We didn't have to pay £795 per week. I do hope this helps and you sound desperate and although my suggestion isn't ideal there isn't an ideal answer. You guys need help. I am sorry if I offend you.

My dad was a wanderer for a short time and it killed my back. I sympathise with all of your situation . Red xx
 

Bagpuss77j

Registered User
Nov 5, 2015
30
Wirral
Hi

It's my first time posting. I'm very stressed and at breaking point quite frankly and just need advice I guess. I'm sorry this is so long, but I don't know who to turn to and I just need people to understand.

A bit of background. My mum started showing the first symptoms of dementia at 59, got the official diagnosis at from the doctor at 62/63 (like getting blood from a stone). She's now 67. Her partner has cared for her at home all this time and done a sterling job. I live 160 miles away from them and have done since 2010. I've visited for a weekend every 3-4 weeks throughout all this time (I’m lucky enough that my workplace allows we to work full-time but 5 days over 4, which means I can go visit my mum Friday to Sunday so I'm there for longer). I've also skyped them every week for the last 3 years, so mum can see me and just to check up on them.

Anyway, at the beginning of the year I started getting concerned about my mum's partner's ability to look after her. We've coped with her decline gradually over the years, just adapting as you do, but she just got a little worse at the start of this year and I was particularly concerned about her hygiene as she started to have little accidents, and I thought this was the start of her becoming incontinent. Her partner was insistent on keeping her at home so I started going up every fortnight. Every visit is not just a pop-in-how-are-you kind of thing. I stay with them, clean the house throughout, bath mum, do her hair, take them out etc etc. I'm also mum's financial deputy so there's a lot of sorting receipts and shopping for the things she needs.

As a side note, my mum's family (her sister, niece and her other daughter, live a few streets away from her all in the same village, just a 5-minute walk. Sadly, they've had nothing to do with my mum for the last 5 years because they absolutely cannot stand my mum's partner. This time last year we fell out because I told them the truth, that their behaviour is disgusting. Long story and much more to it, but it resulted in them starting to take mum out for an hour once a week. It's not been consistent, sporadic at best, but it's something, it benefited mum and gave her partner a little break. I've been ostracised by them but it's worth the sacrifice for the benefit it brought mum). So in a nut-shell we cannot rely on them for help.

Anyway, mum has been getting gradually worse over the years, but on the whole she was ok. We've always been able to make her healthy, keep her entertained and happy (and I can make her scream with laughter by simply blowing raspberries on her neck, smothering her with kisses or dancing/singing stupidly to her favourite songs) and while she's not been able to say more than 2-3 words at a time and can go weeks between saying those few words, I was always able to understand her body language and gestures as to what she wanted. Interestingly, throughout all of this she's always slept for England. If she gets less than 12 hours she has a bad day the next day. She can sleep up to 16 hours a night and we've always been of the opinion that it must be what she needs, so we let her have it, we don't drag her up out of bed at 9am just because it's the socially accepted thing to do.

In mid-June this all changed drastically. Mum went on a sudden nose-dive decline. Massive problems with incontinence. Terrible and constant anxiety. Not recognising me most of the time. And wandering, not only around the house as if looking for something, but leaving the house and going down the street (something she's never done). And worst of all she stopped sleeping. This is what broke her partner in the end. Sleeping tablets prescribed by the dementia nurse had no effect. Mum was just constantly wandering in and out of the bedroom and trying to wake her partner up, taking the covers away, poking him. Because he got no sleep he became unable to care for her, or function in general, and we were suddenly in a position where we had to put her in residential care. Quickly.

I've been coming to see them now every weekend for the last 3 months. At first to find suitable homes, and since finding one moving her in and then going each week so help settle her (not to mention support her partner for who the bottom has dropped out of his world - suddenly completely alone).

She’s been getting worse and worse since going in the home. Not sure if it's part of the decline she was already on, or if I've made it worse by moving her.

Anyway, she's become what they call a 'walker'. She never stops or sits down. As a result, just after her first week her legs were red and swollen. Her lower legs rock hard and her skin scaling. The home told me that this is because she won't sit down and put her feet up. Her feet stink. Her sleeplessness has continued and the most sleep she's had in one go has been 4 hours. And that's rare. Most of the time when they finally get her to sleep she's up an hour later and then wanders through the night. And the anxiety is worse, she walks around looking terrified and stressed. Her feet now have the most horrific sores on them from blisters as a result of the wandering. She's been on antibiotics for an infection in them too.

They increased her sleeping tablets (can't remember the name) in dosage and frequency and it's done nothing. Last week she was prescribed a new dementia drug, memantine hydrochloride, with the hopes it will address this constant anxiety that's driving her.

Last Sunday after getting home I received a call from the home saying they were really worried, she looked really distressed and spaced out, more than usual, she was walking into things and stumbling around. They were also concerned with the feet sores and her legs and suspected diabetes so had arranged for a blood test the next day.

They thought she was over-medicated so have taken away the sleeping tablets. During the week she was also prescribed another drug for anxiety to be given on an ad-hoc basis.

I arrived on Friday and they told me that she was in a real state. She's worse now than when she was on the sleeping tablets. She's now unsteady on her feet, though she still won't rest and has become a 'fall risk'. They said she looks like something from "the living dead". They told me that just before I arrived she’d just been found 'sleeping' on the floor. It's clearly not the sleeping tablets as they are out of her system. They suspect she is literally so tired from lack of sleep that she can't stand up. Yet her body won't stop moving. Or perhaps her mind won't stop moving her physically exhausted body.

My mum's partner and I spent 4 hours on Friday wandering around with her, trying to get her to rest. She sees a chair, sits in it and 10 seconds later she is off. She's young and fit and bloody strong and you can't force her. She holds on to your hand so tight it's painful and drags you around the corridors. We kept taking her into her room. She'd lay down and be straight back up. Up and down, up and down. Every now and then I could get her to close her eyes and she'd nod off by stroking her hair and face (something that's always been a sure-fire way to relax her) but it's for no more than 5 minutes at the very most. And she then sits bolt up-right, frightened, anxious and then she's off. And she does look like a zombie. She's staring, hardly blinking, not making any kind of eye contact with anything. Staring freakily up to the ceiling, her arms still held upright, wanting to hold someone’s hand even when laid down. Several times over the weekend I've been able to get her to nod off for a few minutes by physically closing her eyes, like you see people do to dead people in the movies. This is the most distressing thing I've ever seen. To see your mum in this state. This will haunt me to the end of my days. I’m not actually sure how my mum is still alive through all this sleep deprivation.

Several times on Friday walking around she started to collapse and we had to drag her into a chair. If she'd have been on her own she'd have fallen straight over. We had to spoon feed her on Friday. She's never needed help with food but she just wouldn't/couldn't do it. The staff were busy spoon feeding other people and I assume they let us struggle with mum simply because we were actually there. Had we not been there, I assume they would have tried to get my mum to eat, but they seemed quite happy to let her just keep wandering off having not eaten anything. In one of the sitting rooms at one point she started to collapse, I shouted out as I was trying to steady her and get her to a chair, and one of the staff just sat there and never lifted a finger to help, she just carried on filling out her paperwork.

When we arrived on Saturday they told us she fell 6 times after we left the day before, another 2 times in the night and four times in the morning. She's covered in cuts and bruises (all over her body), a new cut on her face had appeared and a massive bruise on her hand/arm on Saturday morning. The staff's words were "we are seriously concerned for her safety, but we don't know what to do with her. We are out of ideas"

Turns out they've not given her any medication for a week and have refused to give her the new anxiety tablet because no one is willing to take the risk of giving medication that has a side effect of making someone drowsy and prone to falling to an already prone-to-falling patient. I asked them to call a doctor. They didn't think anyone would come. They called out-of-hours social care who told them to give her the medication and 1-2-1 her. The staff said they literally don't have the staff to 1-2-1 my mum. Eventually a doctor came, examined my mum and his only advice was that the staff must trial the new drug and we'll adjust the dose accordingly. He seemed annoyed at their refusal to give the drug.

I asked the doctor what, if like the sleeping tablets, it has absolutely no effect. I got a very hazy answer of we'll have to cross that bridge when we come to it.

The care home said it was amazing that the out of hours’ doctor came at all. The last few weekends they've refused to come. They just say give tablets and watch her. It's almost as if my mum has to fall and have a major accident BEFORE something is done to help.
I’m like surely there is something they can give to actually knock her out so she rests and her body can catch up? If she falls and breaks her hip and needs 6 weeks of bed rest how are they going to do that? Keep her tranquilised and unconscious?

I've asked the staff what else I can do, if anything. They have no ideas. They are so worried for her safety and that she might fall and "smash her face in" (actual words used) but don't have anyone to watch her all the time. I've asked if they have contact details for external companies where we can pay for an additional person to come in and 1-2-1 mum. They said "not really". All I get is "we're out of ideas".

Again all 4 hours of our Saturday visit were spent trying to get her to sleep and rest. Whenever dinner times comes, they guide everyone into the 3 dining rooms and wheel those in wheel chairs in. No one comes for my mum; they continue to let her wander. But I don't know if it's because we are there and they expect us to bring her in. When we are not there do they go find her? I assume so. Staff very off-handily comment that "she wanders in and sometimes sits down, we just let her wander" I'm now concerned she's not eating and drinking properly. Yesterday dinner time we couldn't get her to eat a single thing. I’m hoping they got something down her in the evening.

Mum has been there 5 weeks now. Next week is her 6-week review where they decide if she can become a permanent resident. When she first had her assessment and went in they said they would never take someone in the first place if they thought there was a chance of them not passing their 6-week review. They also said the only reasons for not passing a review are 1. if the family is not happy with the level of care and 2. if the patient suddenly declines to a state where they can no longer meet their care levels. To be honest both of those boxes have been ticked. I feel as if they are telling me they cannot cope with mum or look after her. I feel like they are asking me for advice on what to do. And I'm stumped too. The reason I took her to the care home in the first place was because we could no longer cope and I thought it was time to take her into the care of the ‘experts’.

I asked two of the deputy managers if this means mum could fail her review. One gave a very hazy 'not sure' answer. The other said Yes. Then immediately realised what she said, back tracked and said "we just need to try concentrate on getting her through this week". I asked if they had information, contacts and support on where I could take my mum if she failed her review, because we cannot take her back home. Again the answer was a hazy "we don't know".

I'm not happy that they are so short staffed, they that don't seem to be able to even provide suggestions/solutions such as when I say ‘can you get someone external in, I’ll sort the payment no worries’. I'm also concerned about hygiene. Many times I've arrived and she's soiled herself and smells (she wears incontinence pants) I've had to run around trying to find a member of staff to help me change my mum and get a key to her room to get clean clothing. Often I've found 3-4 of them sat in the office (apparently doing nothing - I know that's just how it appears, I know they are rushed off their feet and also entitled to breaks). But how long until my mum had been discovered and changed?

This week I found her teeth on her basin in her room all caked up and dried with food. Apparently they took them out the night before. I was thinking why didn't someone clean them at the time? Why didn't someone put them back in this morning when she got up? I went to clean them and discovered her tooth brush is still brand new! I sent her in there with a brand new tooth brush, but it was clear it hadn't been used. Her tooth paste had not been used once either. They must be going for the steradent/tooth bath option I thought. I opened up the tube of steradent and one, perhaps two tablets have been used at most.

I know it's not easy to get a dementia patient to remove their teeth to clean them every day, I've struggled with this myself, but to have not had her teeth brushed once in 5 weeks is terrible. Short staffed or not, what am I paying £550 a week for if they are not making sure she's eating, has clean pants or has her teeth brushed.

They've asked if we can go in and 'sit with her' every day over the weekend, which is what we do anyway. I know they are short staffed, but the reason we took her in was because we can't do it anymore. I'm paying all this money to them and having to actually provide the staff too in the sense of myself. I and my mum's partner both have a bad back. And holding my mum up all weekend has already set us both off. Yesterday evening he was in so much pain he got on the floor and asked me to walk on his back, just to put it back into place. This is ridiculous.

I will be looking for other places in the coming weeks regardless, but my problem remains: If these guys can't look after her, not only from lack of staffing but because they just don't know what to do with her any more, will other care homes be able to handle her?

While I'm not happy with the level of care there, will it be the same everywhere else? After 5 weeks they know my mum and the state she's in. Is it fair to move mum again when she's in such bad shape? Would another care provider be in a place to help more than people who know her situation? Would we start again from square one with trying sleeping tablets etc at a new home? Should I move her now or wait until they’ve (hopefully) sorted her physical problem? Will another move do more damage right now?

Surely my mum is not the only dementia patient in the world an extreme as this?
Has anyone else ever had a loved one this ill? Or been in this situation with a care home not knowing what to do? Whilst I’m thinking of looking for other homes, it’s still terrifying to feel that next week they may kick my mum out effectively. And I know it won’t be literally a case of them putting her out on the street, but when even the experts can’t offer help and advice on where to go next, what do I do?

I'm so sorry, and thank you to anyone who got this far.
Hi lesleyann, what an horrendous time for you I can sympathise with you as my mum as rapidly declined the past year and has terrible sundowners and i care for her 24/7 waiting for months for a Ss assess, i arranged a first respite for mum so me and my husband could have a much needed holiday they assessed mum and we're made totally aware of were she was at regarding her alzheimers and when we took her along to the care home and settled her in ready for us to fly to Spain the next morning only for them to kick her out at 10pm at night because she got stressed out when thy bathed her and got abusive! we had to cancel our holiday and lose most the money. They told us we needed a emi Home for her even though they take alzheimers residents were fully aware of all the behaviour problems and had fully assessed her this 1st experience of care homes terrified me of putting her inane ever again but of course I will need respite ASAP why o why does there seem to be little appropriate genuine care out there for alzheimers sufferers and their families! I think unfortunately it's trial and error you just have to try find the best care possible and report the places falling down on adequate caring, hope it all resolved for you and your poor mum soon x
 

care2share

Registered User
Jun 14, 2015
92
London
A bit confused, before the CoP get's involved someone has to ask them to.
So if, say I wanted to move my wife tomorrow, the LA/SS could go to the CoP if I wanted to move her to some dump that couldn't meet her needs to save money or that didn't meet the standards, wasn't safe or something they could go to the CoP, but until someone asks the CoP to get involved be it me, the LA or SS then they won't even know about it.
Some of the section 3 patients in the secure unit my wife was on used to go to "a well known burger chain" with a golden arch or the park, my wife is section 3 and I can take her out of the home when I want although the staff do need to be told and do a little risk assessment.
Now she's in an EMI home as far as I'm aware I can move her tomorrow if I want although this may be complicated by her section 117 funding so I may need to involve the LA SS as they're paying.
I haven't read anything that says Lesley's mum is anything other than a voluntary resident/self funding (sorry if I've missed anything but I think I've read it all) so it's entirely up to them what happens and where she goes.
K
Ah, Thank you very much for your reply Kevin. So it is only where there is dispute that there would have to be a COP decision or approval. I am relieved that one doesn't have to refer to them for one's every move. Many Thanks
 

Lulu

Registered User
Nov 28, 2004
391
my experience

Am in a terrible rush this morning and have only skimmed through your first post, but much of what I read I could have written myself.My advice is that your Mum needs assessing in an assessment unit where they can look at her meds etc and from there you should be told which Homes will be able to meet your Mum's needs. My own Mum went into EMI Nursing where much of what you describe happened and it was horrendous. She was then sectioned into an assessment unit and from there into a Unit much more able to meet her needs, including 1-1 as required. The sectioning was the best thing that could have happened.
 

Silverssj2

Registered User
Aug 29, 2016
1
Hi Lesley

If You are in the UK phone CQC on the place your mom is in. Get them to look into all what you have stated on here as this shouldn't be happening atall. Firstly No care staff should be using such phrases as (we are scared she may smash her face in) that is so unprofessional and not caring atall.

I am a healthcare professional and we have a lady that wonders round a lot. She won't sit still and can become aggressive when approached but we are trained to tackle these situations in a respectful and kind manner. One is to take the residents mind off things and just sit and talk with them....I understand care company's can be under staffed but most times it is just poor staff care in general that leads to residents becoming unwell.

When a resident don't have the one to one care they need they resort to either aggression, depression or restlessness and to make matters worse it seems that your moms doctors have no idea what medication to put your mom on which is making her so much worse. Get the social services involved and get this sorted asap as its affecting the valuable time you have left with your mother. Social services get a bad rep but it's about you keeping strong and fighting for your mom.

The part about your family struck a note with me as I was arguing with my family for ages to help which they didn't at first, then me and my sister came together to both split the roles or financial and health care responsibilitys. Family can be the worst in these situations but you sound amazing to travel so far and still ensure all is being taken care of.

Truly hope things improve as I know too well what the health care system can be like and if it wasn't for me working 5yrs in the system I doubt my mom would be in the place she is now. Instead of a care setting me and my family found mom a mental health care setting which is one to one basis, moms medication is tricky though as it has to balance between lowering her aggression, while also lowing her hilusinations and paranoia.
 

Wigan

Registered User
May 5, 2013
73
I too would be calling the CQC or CCG to raise your concerns about the place she's in. You don't have to say who you are. Does the home belong to a chain as if so, you could contact head office with your concerns re the level of care.

As frightening as sectioning sounds, sometimes it is the best outcome as they are true mental health professionals and sadly a lot of people working in care homes aren't as clued up as they should be.

I hope things improve for you.
 

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