Struggling with elderly parents. 🤔

[Winterysun]

My mum, who's 80 next year, is struggling being main carer for my dad, 85, who has Alzheimer's.

I work part-time and live about 20 mins drive away, and visit about twice a week.
Mum does have regular carers coming in, as my dad is large, and heavy to move.

The problem is, my visits are often so hard. I've sometimes barely taken my coat off, and Mum's already started moaning, that Dad's not eaten his breakfast/last night's carer was early and disrupted her evening/Dad's toileting problems/how exhausted she is, etc etc.

I often pick up food shopping she needs, sit with Dad if she needs to do something or meets with a friend, and if I know she's stressed I tell her to take the whole morning to do whatever she needs while I'm with him, I also then feed him lunch before I go to work at 1 pm.

Sometimes she just wants to sit and chat, but her whole conversation is feeding/incontinence/Social Services taking ages to return her calls, etc etc'. Sometimes I don't go straight home, if I'm there weekends. I get a takeaway coffee and just give myself half hour in the nearby park, to de-stress before coming home to my own family! It's so draining, and I feel guilty saying it as I know what an awful position she's in.

She hinted I could maybe stay over a few nights a week so she can get the odd evening to herself (she has to do everything for him), but I'm hesitating. I'm finding just the daytime visits draining, even my dh says it's unfair on me, as every visit is completely taken up with their issues. If I attempt to talk about something at work, or a meet-up with a friend she more or less cuts me off and interrupts with yet another of her issues that needs sorting. It's all so one-way.

Yes, I don't know how I'll be when I'm that age, and it scares me. But for now, I'm finding this impossibly draining at times.

Dh is v good and helps her with practical stuff around the house every few seeks, my brother is also great at helping her with all the admin, navigating Care Companies etc, but I feel sadly nothing is enough for her.

Does anyone else have experience of this?

Can you get your dad out to a day centre a couple of times a week to give your mum a rest?

Social work in my area pick them up and bring them back. They have a nice time with others and lunch etc. i think there is a small charge but if he gets attendance allowance it can help pay for such things.

That could help your mum get a rest and some peace.

It’s hard for you dealing with it for one day - but that’s her whole life. I can’t imagine anything harder than being a live in partner to someone with dementia. It’s her life, that’s why it’s all she talks about. I care for my mother who doesn’t have dementia and that’s tough enough. So while I understand what you’re saying, I massively feel for your mum.

Could you look into respite care for your dad every now and then so your mum gets a break? A few days in a home or a sleep in carer once a week? I know it might be expensive.

This is a great idea.

I think supporting someone with dementia is so exhausting and all consuming that it's common for the carer not to be able to focus on anyone else's needs. At least that's what happened to my Dad when he cared for my mum. Up until that point, he'd always been very reciprocal in his conversations.

I'm sorry you and your family are going through this. Dementia is awful.

At some point you may need to support your mum in saying she can no longer cope and your DF may need a dementia specialist nursing home.

If that time is not yet then I echo previous posters re day centres, respite etc.

(Written from my childhood bedroom whilst visiting / supporting my elderly parents).

Also there is an Elderly Parents board here on MN that you may like to check out.

Has your Mum had a carers assessment from social services?

I would struggle to do what your Mum does and at nearly 80 she must be beyond exhausted. Maybe it’s time to consider care homes.

Thank you all. We've tried to broach respite care with her, and even the possibility of a permanent nursing home.

She's very negative about any suggestion of respite (money is one issue and I get that; due to the daily care costs as they are.). She annoyed me the other day, when I broached respite care with her again, and she said 'What's the point, how can I enjoy a week 'off' when I know I've got to go back to this?' I patiently said 'Look, we're trying to help, you could at least try to look for the positives in what we're saying'. She snapped 'There are mo positive solutions, you've no idea'!

I'd already had 3 hours of it, and couldn't face any more so I left at that point. I went back, 2 days later and listened all over again! 😮

It's awful for her, I realise, but also draining for us. She wants to keep him out of a nursing home as long as possible (as we all do), but she's so negative about those, too. I know a few people who work in them and they're so caring towards the residents. You get good and bad I realise, though

His condition is very advanced, he occasionally greets us by name, but mostly stares blankly. I don't think he recognises my mum as his wife, purely the person who feeds and changes him (he's incontinent, and can't move unaided).

I don't think she'd be happier if he was in a home, she'd be very anxious still, although a different anxiety. Hmm, it's very hard all round.

Well done TeenToTwenties, how long are you staying? x

Your mum is 80 and caring 24/7 for someone with advanced dementia. I looked after my mum with dementia for two weeks after my dad died while waiting for a care home place and that was really hard and she wasn't incontinent. I slept badly as she would wake up in the night so I couldn't even switch off in bed. I couldn't leave her at home at all unless someone else sat with her. I was trapped with her.

When your mum says she couldn't enjoy a week's respite because she'd have to come back to it after the week, I think she's saying it's not just a rest she needs but for someone else to take over.

She was wanting to keep him out of a care home for as long as possible but it sounds like her looking after him at home might no longer be possible. Frankly, if you can't give her more than a few hours a week, you should be helping her make a plan for his future. She deserves to spend the last few years of her life in peace.

Would your mum and dad be self funding a residential care home if he went into one?

Are they getting all the benefits they are entitled to?

My dad had dementia. Honestly I understand where your mum is coming from when she says there are no positive solutions because there aren't. A care home is a one way street, people don't tend to come back out. If her quality of life is suffering a lot it might be time to consider it though. Caring for someone with dementia is like caring for a 2 year old in some ways - they can't be left alone, but it's worse because it gets harder rather than easier and there's very little joy in it. Sorry. Perhaps you can give your mum some more help if she is really against care homes. If your visits are draining for you imagine what her whole life is like.

I don't know whether to sympathise With you or want to knock some sense into you.

Just because you maybe take over for an hour or two this does not mean you fully understand what your mum is going through.

To care for someone 24/7 who has a debilitating mental illness and won't get better is soul destroying and your mum is 80! She should be enjoying a slow pace of life and she's not.
You may be doing some good when you visit but you get to go home. Your mum doesn't get to walk away. Maybe for a cup of tea or so but that's her unpaid role in life. You need to start upping the sympathy a lot.

With regards to you parents situation, if his cognitive decline is at a poor level and wouldn't interact with local clubs, then you need to request a social care assessment with the next step being a home.
Respite care doesn't cost a fortune if you have the support of the social care team. My fil who we care for with advance dementia went into respite last week for 2-3 weeks is costing us £120 per week. To be honest it's unlikely he'll come home and we need to further discuss as the fees are £1k per week which needs to be met by us.
For now we're certain it's likely he'll be there until he passes away so we need to view our options.

I'm not wanting to sound harsh but as someone who's been pretty much a carer for years whilst parenting and holding down a full time job, it's frustrating when I hear people complaining about their parents complaining when they don't have a true understanding of what they're going through

I'm really not unsympathetic, but in our family I suppose we all have our different roles in supporting my parents. I'm basically Mum's 'sounding board'. Any suggestions I make to resolve things, in any way are met with negativity.

Also, although I'm generally there twice a week, that's not all the contact I have. I have almost daily phone calls/text exchanges with her too.

Earlier this year I had to let work down for 3 days, as Dad took a turn for the worse and I stayed with them to help.out. In return I had to cover a colleague for a few days this summer. That week, dh was away and I was very anxious about possibly having to let them down again, as Mum wasn't well.

Luckily I managed to work those days and go straight to my parents afterwards for the evening. Dh is normally my fall-back in these situations, anyone else in the family needs to know in advance, as they have a lot further to travel.

Even if I'm not there, they're generally on my mind and it can be hard juggling everything.

Yes, as far as we know they're getting all benefits they're entitled to, but my brother reviews this regularly.

Your mum sounds depressed. And I fully get it from her point of view. She’s elderly, she hasn’t the strength to physically and mentally care for a huge man 24/7 with a few hours break a week. Poor, poor lady. I can understand why a week off wouldn’t excite her. It probably feels like a life sentence. Like I said I care for my mum. I go twice a day and cook all her meals, do her cleaning, shopping and pay the bills. I have help 1.5 days a week. I’ve been like this for 4.5 years and she’s very poorly but not critically. She could be like this for years yet. She’s not got dementia and I’m not old but I find it really depressing sometimes My life is not fun. I haven’t had a holidays in years or many days off. But I’m better off than your mum. I think you SHOULD move in for a few days just to understand why she’s so down and fed up. And you need to ramp up efforts to find ways to help her.

sorry if that sounds like an attack. It’s 1am and I’m at my mothers waiting for the out of hours dr.

Your poor mum. I can't believe you're complaining about having 3 days of work interrupted. You sound extremely self absorbed.

I helped my mum care for my dad with dementia for 5 years, until he died. increasingly all we ever talked about were his needs. we obsessed over his health, his eating, meds, mobility. I spent weeks at a time sitting with him in hospital to prevent falls, having to take time off work. my mum would not consider a care home. I am a single parent to 2 kids and have long term health condition myself. so I know where you are at. but I find what you are saying really alien/repellent.
caring is all consuming and dementia is a million heart breaks over and over again. she is watching her husband die in excruciating slow motion. what do you expect her to talk about?? what do you want from this thread, are you expecting people to tell you she is being selfish? to give you permission to visit less because it's hard for you? you have my every sympathy for loosing your dad this way, it's a terrible thing to go through. but why don't you have more empathy for your mum? why don't you want to help her?

OP, ask for your thread to be moved to the "elderly parents" topic. You'll get a lot more helpful advice there from people going through the same thing.
It is a thankless task for your mum, and for you. You sound like a lovely, caring person trying to do your best. It's ok to voice your frustrations.

What about something like Home Instead carers coming in say 3 times a day, would that help?

OP The more you say the more untenable it sounds. My FIL had dementia and moved to a care home when MIL couldn't cope. She got her life back and FIL was well cared for by a team of staff who all got time off.

(To answer your question 3 nights. But a very different situation as my parents still v able for their ages.)

A friend of mine is dealing with a parent with dementia, and resisting a care home.

One thing she's found locally is a care home that does day care for £32 - she drops her dm off in time for breakfast in the morning, and her sister picks her up at 5pm. It definitely gives them some much needed breathing space and the price seems very reasonable. Would your mum benefit from that? Might be worth ringing round a few in their area.

Also, speak to age UK, they can offer good advice.

Just to echo this post it IS ok to voice your frustrations. There is a long running thread on Elderly Parents called 'So bloody exhausted waiting for someone to die' with various posters who are helping care for their parents and in laws and seeing their own lives hugely changed while doing this for years on end.

Caring is very demanding work and it is very difficult to offer support to a parent caring for your parents when you have a job and a family yourself. You have mentioned two siblings. Have the three of you ever sat down to discuss how best to help your mum now? Or discussed at what point in his health (or your mum's health) things will have to change? How does she feel now about continuing to spend her twilight years as a 24/7 nurse? Have you reached the time where things have to change because she can't continue as his main carer?

Also what's the plan if your mum has a stroke or other major health issue tomorrow? Do you know which care home you would place him in (assuming he would be self funding)? Because trying to choose a care home while looking after him AND dealing with a sick mum is far worse than what you have going on now.

She does have carers come in to help with the practical tasks, as in changing and moving him.

Believe me, my emotions are all over the place, I'm heartbroken about losing my lovely dad this way, as my mum is, obviously losing her husband of many years to Alzheimer's. 😩

We've all tried to talk to her about what happens when she can no longer cope, but she flatly refuses suggestions of respite or care home. I do understand, it's such a difficult step.

I just have the one sibling, a brother. He's actually visiting her this afternoon as working in the area, but normally he can only visit every 3 - 4 weeks, due to work and distance.

My dh is the other main support, he's also very good. I'm the one they see the most though, and Mum's very different with me, compared to them. My brother for instance, phones me after some visits saying she seems to be managing OK, and I wonder if we've actually seen the same person, compared to my visit 2 days before!

Yes she is depressed, understandably.