I think it's time she moved....

[Bristolbelle]

I went to see Mum yesterday, and to be honest it very upsetting. She looked awful, and kept scratching her head. The staff said they were concerned as he resists personal care, not agressively but by going stiff, and curling up. She has long hair, it waas one of the effects of the AZ before it was usually quirte short but she developed a dislike of anyone touching it. Anyway yesterday they asked me if I would mind if she had it cut. This is because at night she curls inot a feotal position and as she draws herself down the bed she often ends up with her head and face lying in urine. Of course they change her but they are worried that sometimes she may be laying like this for an hour or so, they round as close to hourly as they can, but of course if another client needs attention it may be a little longer before they check her again. Well I cut it for her, from about 18inches (mid back) to a collar length sort of bob. It looked really nice too! But then I noticed other things like I always used to trim her chin hairs (why do old ladies gorwn them) But she looked like a tired old walrus. I was also plannnig to go through her clothes as they have taken out her chest of drawers so that if she falls out of bed again there is room to get the hoist in. Well I found four of those horrid open down the back nighties from a hopsital, so I asked why they were there and they told me they had been using them as it is easier to attend to Mum's personal care. I can understand this by why hadn;t they asked me to get her some of her owm - not lot of dignity there. Besides whish they told me is she was a wanderer they would never think of putting her in them as they are not very dignified. I also npoticed there is no chair in her room just a commode. I have noticed she is always in one of the lounges but often looks really tired, and is dozing in a chair. But of course they are not the sort of places you can rest as such, bit like hospitals far to busy an noisy.But I've never known them take her to her room for a nap - does that happen in other homes? Then I thought other aspects of her care, and asked how she reacts to baths and hoists now - apparenlty she resists and shows some agitation at times
The choice of nursing homes locally is apalling, but I really am beginniing to tnk she needs more care than they can offer now. Who decides when it's time to move? I thiink they already feel that way but haven;t actually said it as such because they keep saying if they have anymore clients with the same level of needs as she has they will not be able to manage.

 

[Nan2seven]

Dear BB, this is such a sad post. You are clearly worried about the sort of care that your dear mum is getting in her care home.

Is it, in fact, a nursing home? Or just a "care home"?

I agree, it would have been kinder for one of the care assistants to have let you know that a different kind of nightie was needed. But does your mum still get up and wander at night?

Well done for cutting your mum's hair. Hopefully it gets washed on a very regular basis if she is curling up so far down in her bed ... As for the "old lady" hairs, yes, why DO old ladies grow them? I have to keep a sharp lookout for the odd one or two myself but doubt any of the care assistants would be removing them for her. Would your mum let you do this for her? Perhaps she could be rubbing in some cream into her hands as you do it, to distract her a bit.

I cannot speak for your mum, of course, but it seems to me that elderly people can and do drop off to sleep in quite a busy lounge through the day. So long as your mum is comfortable in her lounge chair, she may well nod off, even if only for cat-naps, which is very much what Brian used to do. (Even when I was visiting him, he would take fifteen minute sleeps and then wake up refreshed.)

If she does need more care than her present home can offer, then yes of course you must start looking for another. But from what you say, it will be a rather daunting task. I do hope you will be able to iron out any wrinkles in the way of shortcomings with her present care and continue as you are. But of course you are the best judge.

Thinking of you and sending love,
Nan XXX

 

[Owly]

Bristolbelle, I know you've done the tour of the care homes in Bristol but have you noticed there is a new one up on Golden Hill near Tesco? obviously it has no track record but it might be worth a look.

Here is a link to the firm's website where you can click on a PDF brochure for more info.

http://www.mha.org.uk/CH73.aspx

 

[Lucille]

Hello stranger!

So very sorry to hear about your mum and the experiences you've both encountered. I do empathise with you. Big time! If you want a chat, please give me a call or PM me. I think, to sum up - and in answer to your question - it's you who has to facilitate the move. Obviously, as you know only too well, this will not be straightforward!

I'm sure you've already done it, but have you discussed your worries with your mum's SW? If BCC are funding, they'll want to know about it. Also, have you talked through your concerns with the home manager (not the carers) or your mum's GP?

You know from my experience of placing mum that choice in Bristol is... mmm, what's the word? Lacking... Although the place in Horfield does look lovely, I do worry about the 'art of glossy brochures' when it comes to dementia care. Until and unless care workers are properly trained and paid a decent wage, no amount of well-lit photographs of perfectly coiffed residents with smiling staff will allay the shortfalls found in some care homes. Whatever the postcode.

Sorry, that's not a very cheery note to end on is it and I got a bit ranty tanty there! PM me, I have much to share with you.

 

[Bristolbelle]

I have had a good talk to the home and mentioned the fact Mum always looks tired, they have said they do ask her if she is ok. Of course I challeneged the fact that with severe cognitive impairment she has no idea if she is ok, and that they should be taking more leads from physical signs. I also mentioned that she is frequently in the dining room, probably the noisiest busiest place, and they agreed but it was because it is the room nearest the office and as she has a habit of leaning she leans, in her chair they want to be able to keep an eye on her in case she falls. So I mentioned the fact I think she is in pain and that is why she leans so much, I now she is on movicol to stop constipation but I amd now wondering if it is over stimulating her bowel? They said she sess the Dr regularly, and yes maybe she does but I don;t trust her GP anyway after the fiasco with the ambulance.
I said since she has been downstairs I findit harder to get one to one quality time and they said the home is home to all the clients whcih I understand. But I'm gonna lock the door to her room in future so we can have private time. However one of my biggest shock was one of the carers saying it can take 35-40 minutes of personal care time when Mum is bad? Well sorry but I would have expected it to take a LOT longer. If she is havng a bath or something don't they get time to enjoy a bath? If they are just dipping her in and out no wonder she gets distressed.
The place was wonderful when she iwent there, but now I am convinced she needs more care. her GP says it is in her best interest to stay there, but having looked at the home that is 500m my house today I do feel I want her to move now.
This home has only just come out of special measures with the CQC and has a LOT of work to do, they have started on a rolling maintenance and decorating programme. But the feel of it up to last tiome I visited was very differnt, more vibrant and positive. The rooms are large - big enough for hoists and personal effects, there were several activities going on, and there is a vacant room overlooking Mum's childhood home. It is so close to me I can be there in three miutes on foot! And that is a huge reason for me wanting Mum to go there, plus they now accept LA funding without top ups.
God I'm so torn, people say moves are not good, but I really feel Mum needs more than she is getting care wise.
I've instigated a CM7 assessemnt for later this week

Today I was told Mum is on a liquised diet but when i went in just over a week ago she was eating the same as everyone else - and had been given a knife and fork! So I used her pudding spoon to feed her. It's just little things like this, her care plan says a) but I someitmes see b) and it's starting to worry me.

 

[TinaT]

I understand completely where you are coming from and my heart aches for the worry it is all causing. Many of the things you describe I also experience in my husband's care home.

He has to be in a room where all the residents who need extra care are kept together so that one care assistant is always in the room. This room is also used by other residents, one of which insists that the tv volume is very high.

The room also has double doors leading into the dining room and very often there is a cd playing in the dining room, again loudly. I feel like I'm going to burst at times with all the noise from the cd clashing with the noise from the tv. When I'm feeling particularly angry about the noise I lower the volume on the tv, and get screamed at by the lady who likes it loud, or I switch off the cd player in the dining room as there is no one in there to listen.

There is another resident who can walk around but insists on a particular chair in the room. She thinks I've come to visit her and dominates my time as she needs someone to talk to. The residents who can walk but prefer this room to the two other rooms they could be using, all contribute to my feeling that my husband and I have lost any shreds of privacy altogether.

At times I have to cause my poor husband extra pain as I have him moved out of his chair and into a wheelchair so I can take him into a quieter room. Then when he falls asleep in the wheelchair with his head at an awkward angle, I then have to take him back into what I myself secretly think of as the 'hell on earth' room, get him back into his chair and stay with him until he drops off to sleep again. I know that this room will always be staffed and so is the only room where I can leave him in safety.

I'm telling you this because I think some of the problems seem to be endemic in so many care homes. No care home is perfect and I wonder if you would be as well just keeping on letting the staff know when you see poor care and undignified routines? It is very stressful to have to do this and balancing the fine line between antagonising staff and getting them on your side is a hard one.

I wish you luck whatever you decide.

xxTinaT

 

[PatH]

Gosh Bristolbelle and Tina I feel for you both. When Donal went into his NH five years ago I had massive problems , lots of heartache and finally we as a family made an official complaint and went to the home inspectors. It was re care and medication, now things are much better but I keep a very watchful eye and have no problem bringing up any issues that I'm not happy with. Donal does not go to the day room, he has his own tv and cd player( he never opens his eyes now but I always hope that he hears ). His room is like a little home from home. I used to feed him all his meals but because of his swallow am no longer allowed ,but I check the meal book for every meal and his fluid intake. There is also a chart for toileting and I check that to make sure he's not constipated. weekly I check his feet for pressure marks and monthly ,I, along with the senior nurse have his 'bum'area checked. I also from time to time ask to see his cardex. So you see what a pain in the butt' I am. Some days when I am going out I feel that I have a few daggers in my back but Im determined that while I can I will not allow them to put us through the misery we had when he first went in . I have learned how to cut his hair and I too have to cut all his t shirts up the back because of his restricted arm movement. I am lucky I'm only five mins away from him and am with him at least three times a day but change my times so that they cannot be sure when I will arrive. I know i'm over the top but he hasn't a voice and sure what else would I be doing. Sorry for the long ramble. Hope you can get your problems solved. Patx

 

[Bristolbelle]

Nice one Pat! and others.....

It's terrible we have to be so proactive, but I am determined to op in on a few more meal times now, and to see what Mum is eating. One of the reasons I think nursing care will be better is because better records are (or should be) about all aspects of care.
I guess for me one of the biggest issues is the fact that the rooms are just too small for
personal posessions and the hoists. This means Mum has no little sanctuary that can be turned inot a "home from home" and that is really getting to me.

Owly - thanks but Horfield is a 2 bus journey for me so not ideal

Nanto seven - No Mum doesn't wander anymore, so no one sees her in
those awful gowns, it's just they didn't let me know she needed something and I've always made it so clear I will get her anything they feel sa he needs.
TinaT - I'm not expecting any care home to be perfect, but as you will have read ther room size is a huge issue now, how can you have dignity when all your memories are piled up on a top shelf? And the privacy and noise is problem. The rooms in the home I looked at today are massive, certainly big enough to hide in and be private.

The place where Mum is is perfect for those who can still mobilise and join in, and I would still choose it today if I was making that first step without the benefit of hindsight. The staff are overworked and undervalued, but and this is the crux of it Mum has gone beyond the care they can provide.