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.

It's worth getting in contact with social services for an assessment of needs for both your mum and you. Carers stress is real. You need a better outcome for both of you

Thanks @Mumof1andacat. My mum's been assessed and has been provided with an electric bed, bed lever, commode, walking frame, and wheelchair. She's been under adult social care services for a while now, and they're due to see her soon to see if there's anything else she needs. I've had a carer's assessment and was told I'd be allocated a social worker for me, but that there was a very long waiting list, so that hasn't progressed in about a year.

Everywhere is stretched and has limited resources, so I'm trying to find ways to be a bit proactive.

Sorry if this sounds heartless OP but you must now take care of you.

You now need to make an enormous fuss with social services OP.. Tell them you can’t cope with your mum living in your home anymore and that she needs residential respite care for a couple of weeks asap.

In view of her recent deterioration insist social services re assesses her care needs including eligibility for CHC funding. If you get it, this should pay for sitters for her twice a week so you can go out

Remember, today is the best she will ever be. Think long term. Realistically, it's time for your needs and wants in the prime of your life to take priority over somebody near the end of theirs.
Maybe time to throw in the towel and step away without guilt, after all no parent of sound mind would want this life for their adult DC and allow them to live this this making such huge sacrifices indefinitely. Console yourself with that. Pre dementia, what life would she want for you?
I saw many circumstances like yours as a district nurse and almost always families wishing they'd never stepped on this treadmill. My GM lived to a ripe old age heavily reliant on my DM, who herself, died suddenly six months later.

Thanks for the pointer to CHC, @MobyFlick. I've had a look at the referral form and it wouldn't progress as Mum is mostly Cs with a couple of Bs and one A. Besides which, you mention an entitlement to carers, but the problem where I live is the massive lack of carers generally, both NHS and private.

She had an awful time in hospital, and deteriorated because of that, so I'm not about to put her in a home right now for a bit of respite. I was thinking about it before this hospital episode but think I'll have to wait awhile now for both of us to forget the trauma a bit! Also, I think it's more likely I'd have someone live in so she could stay at home whilst I went away for a few days. Familiar is better for her I feel.

@cptartapp I'm not going to throw in the towel. Nor do I wish I hadn't started caring for her. It's mostly an honour to spend time looking after her because she brought me up on her own. If she reaches a point where she doesn't know who I am then that could be the point I accept our time is at an end. Until then, I'm looking at ways to traverse this new path.

I'm in a bit of a rut, mainly because I can't find a carer to come in for a day and allow me to go out. It's also early days, and there must be ways to make life a bit easier without being drastic. I just need a bit of help working things out.

My sympathies op. It sounds like you're doing such a wonderful job. You must be so tired.

When you say you need help reframing it, what do you mean?

Pp's have given good advice. Doesn't sound like you're ready for some of the steps advised.

Do you need advice on looking for a carer?
You say you want somebody live in?
I wonder if they have au pairs but for the other end of life? That might be something to look at if you have to space for someone to stay.

I would strongly advise reading the book Contented Dementia. It's full of really useful advice about the reality of caring for someone with dementia full time. It's essential you get help, the book explains why (and how).

Thanks @saxendaqs What I meant about someone staying was about me having a break for, say, a week and going away. I know Mum would rather stay at home, so I'd get someone to stay rather than take her to a care home for that.

What do I mean about reframing? Up until this latest happening where she's lost a bit more mobility, I'd managed to, mostly successfully, consider and utilise the opportunities that being at home gave me. Over the last couple of years I've converted my shed into a studio (fully insulated and with French doors!) to give me space out of the house, for instance. Before that I retrained by doing a BA and MA with the OU in a specific field, and started a business which allowed me to be at home a lot, with occasional times with clients. That became too stressful, so is on hold a bit now, although I do have a plan for something a bit less stressful to keep my hand in and hopefully earn a bit of kudos in that world to use later when I can return.

So reframing is about still using my skills, but in a way that fits with life as it is now. And also isn't majorly stressful. It's also about addressing my mental tiredness so that I can actually do these things! Mindfullness? Time management? Ability to compartmentalise more? I don't know.

To be honest, having had advice from everyone on this thread, I think I have two main issues. One, feeling trapped every day, without the chance to escape for a day a couple of times a month like I used to. And two, the mental tiredness that prevents me using the hours I can take away from mum and doing something productive for me with them (I could probably work for about 16 hours a week on various projects if I was operating at a better level!) I dunno, it's not been long, so maybe I just need to get into new routines better before I try and move onto that stage?

FIL went into respite care for a week every two months before he got full time care. Is this available in your area? His wife would have been broken otherwise.

@bluejelly Thanks so much for that! I looked up the whole Contented Dementia programme and it looks really helpful. I'll definitely investigate further.

I once read an article in one of the Sunday papers about having a mum with dementia, and the advice was to accept the world they lived in wasn't your world and go with the flow, which I try to do.

One of the things my mum gets stressed about is if our cat goes out. So I think from now on, I'll just say he's asleep upstairs.

@WeedKnife Theoretically yes, but I'd rather have someone stay in the house and me have a holiday, and one issue I'm having is finding carers of any description. The agencies round here don't have capacity, so perhaps I'll just have to be patient, and then work with what's available short term, and build up to more. Thank you.

Good luck @TrappedInAnotherLife I hope you can work something out. You need time for yourself.

Thank you. I absolutely do need a break, so I'll work towards getting one!

Could you ask the SW if there is a day centre nearby where she could go for a couple of days a week to allow you to get out and about without worrying? Is there a local Carers Support you could refer yourself to as they will know about different types of respite.
Also a Telecare assessment might be useful to get some tech where you can see what mum is up to whilst you are out and about. She could have a falls alarm etc.
You need to find a way of you getting a regular break but knowing she is safe.

@vdbfamily She just wouldn't go to a day centre - she's been asked lots, and she doesn't want to. She likes her own company, and mine, and that's it. Which is fine, but it's a heavy mental load for me. Oh, I'd love it if she went to one! Pre Covid me and a community nurse managed to get her going to a monthly lunch club, which she hated and went on sufferance!

I'm getting a falls alarm, although I'd rather she didn't have chance to fall. Left alone she thinks she doesn't need the walking frame and ends up in a pickle. I've also been looking into home cctv so I can keep an eye on her when I'm not in the room.

No wonder you are feeling stretched. Your post reminds me a bit of expectant mums who think they will be able to write a novel, renovate the house, start a new business etc while on maternity leave … then find out that having a newborn is a full-time job in itself! Caring from your mum has gone from being a manageable, part/time job that you could fit other things around (studying, business, some leisure/personal time) to a full/time one that has pushed everything else out.

the problem is that babies eventually grow up and become more independent, whereas your mum is going to need more care. and your caring ‘job’ will require you to put in increasingly longer hours over time.

i guess it’s up to you to decide if you are ready to be a proper, full-time carer now and to put everything else on hold for the foreseeable future? If not then I agree that you need to kick up a big fuss with social services.

You could try an agency that does live in care? They usually do fortnight stints and come from all over.

You could also look on the Curamcare website.

Do you have friends locally whom your mum would be OK with who you could start inviting round for tea and a chat? If your mum would be OK with it then this could be a way for you to feel more like yourself and have a different connection with people, a sort of ‘micro-break’ for your psyche.

Getting more people involved in your situation might help you to think about wider/bigger/more long term solutions as well. It does sound as if it’s not terribly sustainable in the long term being as you are, without other family members to share the load.

WRT the day centre, are you able to a bit of a brisk ‘we’re going somewhere’, ‘just for a cup of tea and a chat on the way to Tesco’ and bundle her off type strategy? You could try it once or twice as you never know, she might find it okay once she experiences it or make some new friends, and if it goes badly you do not have to go again.

Dementia is such a horrible thing.

Falls monitors and cctv would make it easier for you to go out. Cheap and easy to install too. You can have one where you can easily talk to your Mum. It be almost like you were there.
I'd get that in place ASAP so your Mum can get used to it.
Amazon echo's are like little tv screen so you can see your mum and she can see you. She does't have to do anything to use it. The options are almost limitless.
(You probably already know all this already but just in case you dont)

I think getting a career in would make all the difference. Is this something that you need to pay over the odds for to make it happen.

You sound like you are a lovely daughter. It must be difficult for you. iIt also sounds like you have been proactive about looking after yourself too. The garden office was a great idea.

Do you have good friends around? Can you host things at your house? A book club or art club.

I will look after my Mum if she ever needs me to.

I guess it’s up to you to decide if you are ready to be a proper, full-time carer
It's more than full time though - a full time carer would go home and get downtime and weekends. You will be there 24 hours so doing the care that two or three carers would be doing.

Take that into account when you talk to social services etc. E.g. I can do daytime 5 days but need someone else to do night time checks and weekend care.

Forget about whether you can get a carer or not - you first need a care package agreed then you go about looking for a carer. At the moment it sounds like everyone is happy for you to do it all (including you). That's not realistic. You will burn out.

Thanks everyone for your further input, I really appreciate it.

Yes, @Chocchops72 you're absolutely right, caring has gone from something I could manage around everything else to all consuming.

@aramox1 I'll do this at some point. I feel now we've got to get our routines sorted, just to make life easier all round.

@tescocreditcard I'm already on there, and carers are few and far between here.

@erinaceus Pre covid me and a community nurse got her to go to a monthly lunch club. She hated it but went to keep me happy. At this point I don't want to do that to her. The current situation is completely unsustainable, you're right!

I've currently got an EchoDot, @MouseTime, and am just working out exactly what would be best in terms of CCTV etc. The ones with a screen where we can see each other sound good, thanks for that idea. We used to use Alexa to remind her to go to the loo, at the moment it reminds her that the news is on at 6pm! I do have friends and opportunities to go out, I think this part is just a case of getting the routine sorted, and working round it. We've sorted early mornings as I like to get up dead early, just after 5!, so I get up, she gets up for the loo, I tuck her back in, and her bed has sides so I'm not worrying, then I can go out for exercise and thinking and space etc. for about three hours, which is great.

I'm working at making downtime for myself, @HereForTheFreeLunch. My mum's more into a routine now. And there's more learning and working out to be done. She goes to bed quite early, so I think it'll be workable to go out in the evening for two or three hours if something local's on. I know time away's important, and whilst in the days after she came out of hospital I felt overwhelmed and the situation impossible, it's slowly shifting to something more sustainable. Thanks in part to the input everyone has given on this thread over the last three days. Even since then strategies are being put in place and things changing.

There's also a big beacon on the horizon. A lovely Occupational Therapist from the local hospital has been round, and is sorting out (to start) a care worker coming round once a week who does activities. Next week her and Mum will be doing tabletop gardening in the kitchen, and I've also bought a colouring book and paint by numbers as Mum expressed an interest in those too. And I bought a suncatcher craft kit which I thought might be enjoyable for her to make with the care worker. OT is also helping with other things, and suggested I contact the Alzheimers Society about a sitter/carer to enable me to go out for the day. She's also going to come round regularly and see what else we can set up.

She's also putting other things in motion (most of which I've forgotten at the minute!), but she's very on to getting as much help for me as possible. I'm seeing her next week. She's very much not letting me carry the load, and has been quite wonderful really.

Thanks everyone for your suggestions. I really appreciate all of your input, it's helped me think about what's right for our situation, and what I can do to make things better and more sustainable for both me and my mum.

Hugs @TrappedInAnotherLife - I'm glad things sound as if they are looking up a little.

I bought my mum a jigsaw from Relish - they have some pleasant 100-piece ones for adults. Jigsaws didn't work for her but they might for your mum perhaps.

I hope as you both recover from the hospital admission that you'll think again about the day centre. But better still if things could be in place at home. I wonder if it might be worth thinking seriously about whether your mum wants to avoid any further hospital admissions. It's a big decision as it could mean she dies from something she would otherwise survive, but you've seen just how damaging an admission can be and how much people can lose from it. Life is more than survival.

If you already have an Amazon dot then it seems like a no brainier to go for the Amazon echo’s.

Hi OP.
You can find carers who will do a week's respite by looking at The Lady magazine, in the classified ads.
I was a home carer and that's where I advertised.
You can also place your own ad. there.