Weighed down by caring for my mum

[TrappedInAnotherLife]

Hello everyone, I hope someone can provide a bit of advice or support or suggestions on how to reframe my life as it is at the moment.

My mum has lived with me for a number of years. She has vascular dementia, is partially sighted and her mobility was subpar. She recently had to be in hospital and when she came out after nearly three weeks she had lost more mobility and her dementia is worse. (On the scale, I'd say she was at stage 5/6.)

The end result is that she now lives downstairs and needs help to move around. She has a frame but she needs constant prompting when she goes from her chair to her commode or to her bed, otherwise she doesn't use the frame and/or forgets what she's doing.

Because of this, whereas before once a week I went out for the day to give myself a break, leaving her sandwiches and a cold drink for lunch, I now can't leave her for more than, say, three hours maximum (although the longest I've been out so far is probably 2 and a bit).

I'm having trouble finding carers, my mum shouts and is angry at me a lot (I know this is because she's frustrated, but it's cumulative effect is so disheartening), and I feel trapped.

I've no other family other than a distant cousin who's in her eighties. My mum is in her nineties and I'm in my early fifties.

I'm trying to reframe this time as an opportunity to work out the rest of my life, and to work at home in various ways. However I'm extremely mentally exhausted and finding it difficult to concentrate on anything. My life seems to consist of me saying 'walk round', 'step back', 'hold onto the frame' and other such mindless stuff.

I also try and think about the future because when you consider our ages, she won't be around for too much longer, and I'm still relatively young with plenty of time ahead of me (hopefully!), but then I have small panic attacks thinking about her living to 100, and another ten years of this life, and I panic about how I'll cope.

Thanks very much for reading.

I also recommend Contented Dementia.
Agreeing with everything your mum says and lying about things, so she doesn't get upset, help enormously.
I was always pretending that dogs or cats which were long dead were somewhere else in the house. Anything to keep the person happy.

I think just agreeing with your Mum about things may make her happier. My Mum had to do this when caring for my Gran. Just little white lies that allowed Gran to be more relaxed and content. So if she asks about your cat. Your cat is asleep upstairs. It will stop her worrying about it going out.

You have to find a responsible person who will agree to sit with your Mum so you can get out for a few hours. Mum got a carer who brought some draw tickets with her and told Gran she needed help folding them all up for a draw. Gran happily accepted she was helping someone and spent ages folding up the tickets. By the time the carer came back a week later she forgot she had already folded tickets so was quite happy to do it again. Mum told her the carer was a friend who needed help. Gran flatly refused to agree to a carer.

Can your Mum get an attendance allowance? If so use that money to pay for a carer, but don't tell your Mum it is a carer. You will probably have to pay about £25 an hour to get a private carer to come, but it is worth it to get a little break.

Hi you have my sympathies. Personally I would be looking at care homes by now as I’m not the person that you are, if you go this route please do not feel bad about it. You are in your 50s - I know peole who cared for elderly parents until they themselves were in their 70s.
Have you gone through the process of getting an assessment for funding? My mum gets around £100 per week attendance allowance and I imagine you could save it up and use it for respite care (assume you have power of attorney?)

Good luck with it all, and hugs

@TheShellBeach Thanks, I'm trying to do more of this sort of thing!

@caringcarer Yes, I definitely need to sort the carer situation. Hopefully, it won't be too long. At the end of last week I sorted out a routine for us that gave us time doing things together, allowed me time to work, and also have downtime. So life is a bit easier.

@Lemme I definitely won't be doing this in my seventies as my mum's in her nineties, so realistically doesn't have much time left. However, your post gave me food for thought, and I've set a cut off of 55 when I'll properly revisit how things are, and have given myself permission to stop then if it's too much. That doesn't preclude me deciding to stop before that if my mum gets worse, and of course she could pass away at any time. Setting a timeframe has already taken off some pressure, and I feel less stressed. It's about a year away.

@PermanentTemporary Yes, jigsaws and any time of game don't really work here either, it's all a bit complicated for her. That's an interesting thought about avoiding hospital admission. Not sure it's appropriate right now, but definitely something to consider later on. Thank you.

@MouseTime - I've got a CCTV now which has two way audio, so that might be enough.

@TheShellBeach Tha Lady sounds like a great idea for the respite weeks! thank you.

OP - How long has your mother had dementia?
Unfortunately, the older a person is when the dementia starts, the longer it can last.

People who get young-onset dementias have a much more rapid decline to death.

Can you keep things as calm as possible? Don't overstimulate her. Let her sleep. Don't stick the telly on (unless she is clearly enjoying it) as too much sensory stimulation makes most dementia patients agitated.
I've always noticed that people with dementia swap channels every few minutes because they cannot follow what's going on.
That's why antique programmes are good, as they don't have a plot, and the people on them are generally on the elderly side.

@TheShellBeach I started to notice in 2014. She's around Stage 5/6 now.

However, it being vascular dementia, it's more likely she'll die of a stroke or her heart.

@TheShellBeach

My mum loves all the antique programmes! 😂It's pretty much the only kind of thing she watches now, so wonderful there are lots of them!

One more thing - as per Contented Dementia - try as hard as you can not to ask questions.

Even things like "did you sleep well" can be complicated and frightening for a dementia patient, because they have no idea if they slept well. They know that you're expecting an answer and they don't know what to say so they respond angrily.
Reframe it as "I hope you slept well. I did" and leave it at that.

Also "I've got this jumper out for you today and I'm going to help you to put it on" is better than "which jumper would you like - here are four - and do you need me to help you put the jumper on" - it's too much choice, it's two more questions, and it's confusing.

And if your mother is one of the many dementia patients who like packing suitcases (because they do not recognise their home anymore and decide that packing to leave is reasonable) either help them, or say nothing.
They generally unpack again a few hours later because they think they've arrived at a hotel or B & B (again, not recognising home).

When your mother says she wants to go home, tell her you'll take her tomorrow because it's late. Promise you'll leave after breakfast the next day.

Obviously, after breakfast the next day, she will not recall your promise to take her home.

Asking to go home really means "I want to go somewhere where things make sense. Nothing makes sense here so I ought to go home. My parents will look after me and that's where I should go".

Clearly there is no memory that the parents are long dead. Resurrect them. It calms dementia patients if you buy into what they say. Trying to tell them they're wrong all the time is hopeless and will make them angry. You would feel angry if the only person you ever saw in your life told you that you were wrong about everything you said.

Try and see it from her viewpoint.

Some good ideas there. I just present her with the clothes for the day and she puts them on. Thankfully she currently knows she's home, and is very happy to be there.

I am, however, preparing for the time when she doesn't know me as I'm too recent, and plan to go with me being a friend of her mum's and that her mum's at work, so if we get to that point, I'll see how things go with something along those lines. She used to go to a neighbour's house after school until her parents came home from work, so that could be feasible.

I've just read some of Contented Dementia and skimmed the rest. The scenarios described bear little relation to my mum's situation, so it wasn't very helpful. I think it had a one approach fits all theme going on, and with dementia there are probably as many different manifestations as there are people with the disease.

So possibly helpful if your relative or friend has the disease in a similar way to the people in the book, but otherwise not.

Thirty years ago I knew a lady in a home with dementia. She thought she was at her old job and all the staff went along with it, so hardly a new approach.

@TrappedInAnotherLife have you made contact with your local carer’s network? You don’t have to be a registered carer. Ours here are amazing and offer all kinds of support just for you - the carer. No need for an assessment, it’s enough that you care for your mum. They made an enormous difference to my life. I wish I’d got in touch with them sooner.

Also have you investigated whether she’s eligible for attendance allowance? It might take some of the weight off you if some of that could be spent on cleaners or other help? We went through all of this with my dad and the attendance allowance made a huge difference. You could perhaps use some of it to get a carer to sit with her while you go out for the day to preserve your time to yourself?

And finally… our local carers network paid for me to have 16 hours counselling. You might find that useful in helping you reframe things? We are in Wales, fwiw.

Hi @TrappedInAnotherLife - sorry you and your lovely mum are having such a tough time but lots of hopefully helpful advice on this thread. May also be worth contacting AgeUK who offer respite cater support in some areas: https://www.ageuk.org.uk/services/in-your-area/carers-support/ 💐

https://www.tuvida.org/what-we-do

This is another great organisation which covers a lot of countries and specialised in respite breaks for carers.

@Cinderellasfeatherduster Yes, Mum gets AA. The trouble is finding carers! It's a big problem in this area.

I'm trying to get some more help via the local carer network.

@RiverRed AgeUK don't provide support for carers in my area, just for older people.

@vdbfamily Oh, that looks great! Sadly, nothing in my area.

@TrappedInAnotherLife I think your doing an amazing job (without sounding patronising)
Would it help (without being too specific) if you said where in the country you are as people may have some specific ideas. Hugs x

One of my neighbours had very good live in care from Country Cousins, expensive but good.

Do look after yourself, you sound a lovely daughter.

@TrappedInAnotherLife I have to agree. You sound like a very loving and kind daughter.

Hi everyone, thanks for your comments. @Stomacharmeleon it probably would, but I'd rather not if that's okay.

@LadyLapsang I'll make a note of them, thanks, they sound like a good company, and I have a plan to have a "once in a lifetime" holiday next year, and I'd rather mum was at home with someone rather than in a home for a fortnight, if it's not totally necessary.

Thanks also @SaxSick

Anyway, things are a lot, lot better than they were. My mum is a lot more settled and into her routines. Since I first posted we had a huge bust up one afternoon when she just completely lost it with me whilst we were out because I'd taken longer than a nanosecond to help her with something. We didn't speak all the way home (which was marvelous I have to admit!) as I was so angry. She apologised later and we had a big chat about her abilities now, that we're both doing the best we can, and it isn't fair to me for her to be angry with me all the time. Since then her anger has reduced considerably, and it's more mumbling and grumbling which I can cope with most of the time and zone out from.

Still waiting for a social worker, but am looking forward to pushing for carers and getting a proper break regularly. I've also managed to sort out some of my own routines so I can work from home better. And I make sure that I go out every day, even if it's just for an hour or two. It's good for her to get used to having a bit more independence, and it's good for me to get fresh air and a bit of time to myself.

Thanks everyone for all your help. I've really appreciated every suggestion, even if it's not been suitable for my situation.