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?

if OP doesn't want to do the overnight care her mum is asking her to do, she could help her mum organise over night carers, or put it forward as a suggestion?

You find it draining? Put yourself in your mums shoes. Then you might understand her...

This light hearted thread has taken a darker turn.

I don't have any solutions except for what one poster said. Would the parent doing the caring accept advice from an outside party?

OP I really hear you. My mum is the same age and cares for my dad with dementia. She really complaines about him so much to me when he’s been nothing but a good and loving husband and parent all his adult life. She almost takes it personally, like he’s being deliberately vindictive, when he loses his shoes or puts the wrong coat on or can’t remember which bin the waste goes in. It’s extremely hard to listen to and makes me stressed. I feel like on top of all my own stresses (normal working life, child with additional needs) I have to absorb hers and it’s me more than my siblings she piles it onto. All I can do is listen and raise it when she really is on a rant about him I say look that’s enough.

One thing my mum does find useful is there’s a mental health nurse for older people in the community. She comes to visit once a month for two hours or so and they have a good relationship. She advises mum on things and mum can offload on her a bit.

OP, I get it, and am going through similar. It sounds like you have a tremendous amount of love and care for your parents, and seeing our parents, effectively turn back into dependants, is very hard. fwiw, I think it is perfectly reasonable and acceptable for you to come on here, an anonymous board, and say that you are struggling. It isn't a competition, and clearly it is harder for your mother. It sounds to me like you are offering them a lot of time and care, and I can totally get how hard this is for you. It is very hard and sad, to see our parents decline, and to know that their years are limited, and that this is how life ends, being nothing like when we are in our prime. Sending love and hugs x

I say this bluntly but mean it kindly- keeping someone out of a care home as long as possible if not always the best option. Your dad doesn’t recognise anyone anymore. He’s incontinent and can’t move unaided. Needs feeding. Heartless as it sounds- it could be anyone doing these things and he wouldn’t notice. His situation unfortunately can’t be improved as Alzheimer’s is irreversible.

Your mums situation can be reversed( to an extent) as she sounds in relatively good health. She could have much more enjoyment with the burden of caring gone, your relationship with her would probably improve and she could go out and see friends etc. She will never see the time has come for a nursing home so it might be you do have to force the issue a bit. Otherwise there will come a catastrophe where she becomes too unwell to look after him and either you and your brother have to, or you place him in the first available home rather than the best one available that you’ve researched.

I get it, I really do. My dad has dementia and my mum is coping atm. I see her weekly as does my sister. Me and my sister are both nurses and we’ve told her that if the situation deteriorates any more he will need a care home. We’ve visited them with my mum and found one we really like, that will be easy for her to visit daily if she wants. She is prepared that it will eventually happen. She does have guilt (in sickness and health) but we almost have taken the decision away from her in a way so she accepts it more and does see the need for it.

This post might be harsh and I do see that but me and my sister are both very pragmatic about dementia/old age/caring having seen the absolute car crash situations that come into hospital by families that haven’t planned enough for the inevitable.

Imagine being in your mother's position. She is with your father all the time and when you visit obviously you are going to get all her frustrations. Is it possible your father could go to a daycentre 2 or 3 times a day, or perhaps look into the "be-friending" service?...Someone is matched up with your father, has the same likes/dislikes and can sit with your father for a couple of hours or more a wk, to enable your mother to do what she wants to do and get some respite....
I get it's hard work, been there, but as the saying goes " who cares for the carer" . Living with someone who fades away more and more each day is truely heart breaking. Please don't get mad and fed up with your mother, she has to vent somewhere and she depression isn't uncommon in these situations....Your mother needs you as much as your father needs her, you get to go home and get a break, your mother is there all the time, just give it some thought...

I’m been in a similar situation. My Mum had degenerative physical disabilities which effected her cognitively and there were regular crisis. It was a nightmare. My Dad insisted she wouldn’t go into a home but he had health problems and was getting more ill too. She did go into emergency respite after they both ended up in hospital with covid. My Dad tried to break her out when he wasn’t well enough to look after her.

What I’ve learnt is nothing will change until there is a crisis and even then they will go back on what they’ve agreed.

I would see if your Mum would agree to a dual assessment for SS where they assess her needs as a carer. Don’t expect her to accept any if the recommendations.

I would try and increase care hours for Dad and take Mum out for a coffee once a week. Maybe look around a garden centre. At the moment she has nothing else in her life so can’t talk about anything else.

If you can afford it some counselling for you.

Incorrect. From the very first post:

”She hinted I could maybe stay over a few nights a week so she can get the odd evening to herself”

This is the evidence I used that Op’s mum was pushing her to do more than she feels able.

And given that the (understandable) moans are about matters such as calling social services that would fall away to a large extent if the dad was in a home, I’m not sure what your evidence is that the mum would keep talking about those things.

In any event, if the mum wasn’t consumed by worry and exhaustion of caring, she might have time to eg see friends for coffee and have more of a happy life for herself and to talk about.

My dad had AD and my mum was absolutely exhausted until he went into a home, so I know whereof I speak.

I think this is untrue actually. they may not recognise us, know that we are wife/daughter/whatever. but up to a point they DO know that they know us/they love us/we love them. then later, subconsciously even, they still feel safe even though they don't know who we are. even days before death, unable to move/eat/talk, my dad knew when carers were changing him and when it was us. he would get more agitated. and in respite care he was agitated.

I've had a read through all your messages, thank you. I'll reply in more detail when I get chance, but as for suggestions of taking Mum out so she gets a break, this can only happen if someone's there to look after Dad.

Last week I sat with him from mid afternoon until the evening, while Mum went out shopping and had dinner with a friend.

Last weekend her sister who lives away, stayed in a hotel locally. Myself & my brother collected Mum and we all spent the afternoon together with her sister & family. To do this, I arranged for dh to sit with Dad for the afternoon, then paid a carer to take over for the last hour, when dh had to go to work. So we're doing our best with that.

She was so much happier for a few days after each outing, but obvs that wore off when she was back to routine. Very difficult all round. x

I think this is so much an individual patient thing - my father did not know - so please don't speak as if all people are the same.

you said 'Your dad doesn’t recognise anyone anymore. He’s incontinent and can’t move unaided. Needs feeding. Heartless as it sounds- it could be anyone doing these things and he wouldn’t notice.'...

it is in fact YOU speaking as if all people are the same. it certainly was not the case for my dad, that he wouldn't be affected by different people doing his care/being in unfamiliar surroundings

Your poor Mum sounds incredibly isolated. You are having the same limited conversations with her because that is all she has to talk about - her world is tiny, confined mainly to the house, and living with someone who can’t interact.

It sounds as if she is indirectly asking for the burden of care to be lifted. Could you flat out say to her that you love her, and while she is doing an amazing job caring for your Dad - the man she loves - you are worried about her and want her to have a life, too. Gather some information on local care homes, talk about the positives for both of them, talk about how difficult it would be for both of them if she became unwell. Take that horrible, big decision from her and say you would like your Dad to go into a care home. Almost give her ‘permission’ for this.

See her as an individual, see and recognise her needs and her future.

I think you need to speak to your brother. Do you fully trust him with their finances? Do they really not have the means to get more support and are they claiming all they can if not? Perhaps the worry is they have no spare cash so a care home would be a basic place, however, your brother may not know all the options. I would recommend Age UK support both you and your brother to look at the finances and really set a plan for all this because it will get worse not better. Sadly some older people who are really struggling don't get the right care because their families want to keep them at home for fear of losing the family home to care fees.

And please, when your mum is living with this day and night, it is not nice to then want to want to chat about your own social life that is very insensitive.

No, I didn't - if you are going to the trouble of copying and pasting from a post, maybe check the poster name?

And, given I spoke about my own dad, and acknowledged that you were speaking about yours, your post to me is pretty bloody cruel. I look forward to your apology.

I apologise, if I got confused between posters. I'm out, my dad's death is still too fresh for this. I shouldn't have got involved with the thread. I wish you and your family well OP, dementia is just awful

Thank you - and for you too

I know she doesn't want him to go into a care home, but does he need to? Can you talk to a social worker and your brother about if there is one available?

Believe me, I don't go in there full of my social life and full of myself. I'm not even out that much!

But when 2 hours of the morning have been taken up with solid conversation about feeding, changing & meds, and even Mum then has a lull and it goes quiet, it's an attempt by me to lighten the atmosphere - ie, 'Do you remember so-and-so? I had coffee with her recently/or Jane phoned the other night, we're going to catch up'.

Those attempts are instantly interrupted with 'I've nearly run out of cat food, or So-and-So didn't phone me back about switching bank accounts, etc etc'.

I then obviously offer pop out and get said cat food, or send an e-mail about Mum expecting a call back but there's no let-up. 🤔