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Flat refusals - Carers UK Forum

Flat refusals

Share your ideas about the practical side of caring.
How do you cope with a loved one who refuses to be coaxed, won't get out of bed, won't eat, won't be washed or have her nappy changed? She just says NO and sits with her arms folded. She's in her 80s and too frail to manhandle.
Its heartbreaking.
Sadly, it sounds like dementa may have developed. Has the doctor considered this? Is she receiving Attendance Allowance? Had a recent Social Services Assessment, and you, a Carers Assessment? Does she have over £23,000 in savings and property? Do you live together in her house, or yours? Once we know a bit more, we can make a few suggestions to help.
If you find a way to do it please share. I'm trying to cope with the same situation. There is no answer.
We all want someone to help us - tell us were doing the right things, explain what we can do differently to make things better. There is no one, are no answers.
Regrettably I've given up trying with my mum. If she won't eat or drink so be it. She won't wash and I'm worried about infection as she has a catheter. I seem to be the only one that is concerned.
It's so hard to watch what was once my very smart, clean, articulate mum disintegrate but I've done all I can. Now all I can do is to keep her as safe and comfortable as possible.
There's every assistance short of help available out there. Loads of Managers with check lists who appear, ask inane questions then leave, never to be seen or heard if again.
I've realised that I'm on my own in this. There is no way to cope. I just get through one minute at a time.
I've stopped worrying about the things we consider to be the norm - washing, dressing, eating - and just pray that I can keep mum safe.
I neglected to say she has a firm diagnosis of Alzheimer's and we have all the financial help in place, plus a fridge full of Fortisip - but it still doesn't address the problem as Sue has pointed out. She does sometimes sip a bit of water, but is now very emaciated.
Has a Community Psychiatric Nurse given you support? Are you in touch with the Alzheimer's Society? I know in my area they have their own support worker. If you read Jenny's thread about her mum in law's decline, you will see many similarities. Has anyone talked to you about residential care? Sadly, there comes a time in the later stages of dementia that the patient is so frail and needs so much care that residential care is almost inevitable unless there is a whole team of people helping at home.
Hi - I'm the Jenny with the MIL with (now) deep dementia.

I'm going to say something that will seem 'horrific' (maybe it is, sigh), but really the last thing you want now is to keep mum 'safe'.

'Safe' for what?

For her to end up like my poor MIL? Sitting in a chair with a vacant look in her face, slack jawed, doubly incontinent, can't talk, can barely recognise anyone, and can't walk any more? Eventually she'll end up like my SIL's mother - lying in bed staring vacantly at the ceiling until she stops breathing.....

Dementia is GHASTLY. NEVER wish anyone with it at the stage you are already seeing to 'be 'safe' any longer.

I'm sorry if that sounds 'cruel' but dementia is even crueller.....hideously cruel.....

Every night I pray that my MIL will fall asleep and not wake up in the morning.....that would be a mercy.
Hi ExD (and Sue),

I had the same frustrating issue but sadly no answers. Sometimes I found that mum would accept it if the request came from careworkers but not from me.

I do think you come to the point where there is little you can say or do that makes any difference. If it comes to a point where mum is so emaciated, she is a danger to herself, you may have to consider nursing care. At least the carers there get time off and you can go back to being a daughter again. The most heartbreaking decision but sometimes it may be necessary.

Anne x
Hi ExD

Many of the problems you described I also had with my mother. My mum was also very frail, was diagnosed with both Alzheimer’s and Vascular Dementia plus had mobility problems due to severe arthritis and a dicky heart to boot.

One of the main things I learnt when caring for mum is that dementia tends to be used as a catch-all reason for all sorts of problems that may, in many cases, have entirely separate and very logical reasons for existing.

Mum too hated being showered and would kick up one hell of a fuss if a shower was even suggested. Just like your mum, mine was too frail to be man-handled, and when she folded her arms and glowered at dad and me with her ‘look’ we knew we didn’t stand a chance against her will power which would make Attila the Hun look like a wuss by the comparison.

Eventually I worked out why she hated being showered so much, and the reason was so simple. I decided that her loathing of being showered was so severe that there MUST be a reason why but, because of the dementia, she couldn’t articulate why.
So I decided to have a shower in my parent’s shower. I then found out why. The shower room was too bloody cold. Not the shower itself, but getting dried/dressed afterwards was a form of torture even for me.
I was a reasonably fit healthy person and I hated it too, feeling all cold and damp and clammy afterwards. It took ages to get dry properly. How much more so for my mother who was both very frail and thin, not to mention in her 80’s, and felt the cold very keenly indeed.

I then hit the charity shops and bought her the thickest, warmest, softest dressing gown I could lay my hands on, plus a really thick, snuggly pair of men’s socks. I needed large socks to be able to get them on her feet easily as they were so knarled and stiff from the arthritis.
The double glazed window in the shower room was cracked and very draughty. No chance of that being replaced so I sealed the edges with silicon sealant and gaffer taped over the cracks. Not pretty, but it did the job.
Approx an hour before approaching mum about FINALLY having a shower I walloped up the radiator to max. Nor did I approach her by saying that she must have a shower but by telling her that I’d had one too and hated it as much as she did and why, plus what I’d done to rectify this discomfort.
She was very suspicious but reluctantly agreed to let me wheel her into the shower room to test run how warm it was on the understanding that she didn’t have to have one if she still didn’t want one.
It was like a Bessemer Blast furnace in there but that met with mum’s approval and she very reluctantly (still) agreed to let dad and me (it took two of us) to shower, dry and dress her.
I’d like to report that we had no further difficulties with mum regarding showers. We did but nowhere near as bad as before. Plus, because of her very poor short-term memory, every single time we wanted to shower mum I had to go through the above rigmarole of explaining why I hated showering in there myself, what I’d done to improve things and give her a test run.
Also a neighbour let me know that you should never use fabric conditioner when washing towels as that prevents them from absorbing moisture properly. A little thing, but once I started washing the towels separately without fabric conditioner, it helped to dry mum more quickly. As my old employer used to say, “Every little helps!”

I also developed a load of ‘tricks’ to get mum to eat as her appetite was dreadful. Dad will be up soon so I’ve got to dash. I’ll write about them later. They may, or may not, help you specifically, as with the above washing scenario, but it can’t do any harm either for me to pass them on to you. If they are of no use to you in your circumstances they may be of use to someone else reading your thread.
These tricks worked right up until the last few weeks of mum’s life when she started to lose her appetite entirely and, eventually, even her need to drink.

Got to go now X
Sajehar - I can't believe your mum was ever difficult! Your story is one that I always remember when I think of the term 'devoted daughter' - you were SO wonderful with her, right to the very, very end!

In respect of the cold shower/bathroom, I completely agree that it's a real turn off. Just to add two suggestions.

If you have a small electric fan heater, plug it in (outside the bathroom, on an extension cord I necessary), and then place it just inside the bathroom door, with the door almost closed on it, so that it blasts hot air into the bathroom.

Obviously, it's VITALLY important that you turn it off and TAKE IT OUT of the bathroom BEFORE anyone goes in and uses anything (get water on the fan heater and you've electrocuted the house!)(and possibly you, too!).

But a fan heater really heats up a shower room! (Ideally, have a small fan heater wall mounted - my brother has one and it's bliss - you can towel dry yourself near it/under it!)

Secondly, in respect of keeping warm. I read earlier on this forum to buy a big fleecy TOWELLING dressing gown, ideally ankle length (might have to be a mans!) so that the moment the shower finishes you simply pop your mum into the dressing gown, sopping wet, and then pat her dry through the towelling robe. That should keep her warm while being dried.

Then you swap the now-damp towelling robe for the fleecy warm one that Sajahar recommends.
I agree about the fan heater. I have one over the door of my ensuite bathroom, I usually turn it on as soon as I wake up, and by the time I've had my cuppa the room is lovely and warm. Made by Dimplex, not expensive. I've also got a small electric towel rail, which means my towel is lovely and warm - I'm really annoyed with myself if I forget to turn it on!