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?

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!

My mum's like this. Wouldn't dream of offloading to my brother but happy to talk non stop to me about all her health issues in great detail. Not interested in me at all, talks over me and ignores anything I tell her about my life. It's exhausting. And as someone who wasn't allowed to have negative emotions or problems growing up I'm not inclined to want to listen to it. I can only cope with a couple of quick calls a week. I refuse to feel guilty for that. I didn't promise anyone 'in sickness and in health'.
The expectations from daughters v sons really annoys me.

Also when I said about missing 3 days work, I work freelance, with a small team of other freelancers who are massively overstretched I had to suddenly put those 3 days work on a colleague, and needed to offer reciprocal cover atvsone point this season. I would have felt awful letting her down, as she'd done me a big favour.

If things had been dire traits at my parents obviously they'd have come first, but I was relieved I managed to do both. I did stay with them those nights, and commuted from my parents to work for a few days.

I think there comes a point where you have to be firm but supportive. What's the point of you even staying over then if she's saying "I have to go back to it the next day"- she cant have it both ways. A break is either helpful or its not- it doesnt matter who is giving her that break.

She's clearly not coping so I would say to her that respite is needed and that you wont be staying over- it's simply too much for you. Everyone has needs in this situation - you, your mum, and your dad. Working in addition to looking after both of them must be completely exhausting and I think you really need to draw a boundary here and tell her you cannot cope non stop either. She may get upset by that but it's the truth, the truth isnt always welcomed but it doesnt mean we shouldn't be honest about how things are.

I'd be contacting SS and telling them she isnt coping and they need to arrange respite or nursing care.

It sounds pretty grim for you all. Would your mum be more open to respite care/care home if a 'professional stranger' rather than a family member sat down with her and discussed options? She may be more polite and less negative and open to accepting change. The situation isn't going to improve unfortunately 😕

Sympathy Op. it’s such a distressing condition for all.

Resistance to care homes/ respite etc is very common. When it was time for my MIL to move to residential care both she, and SIL resisted massively.

A good care manager is invaluable. MIL’s suggested respite/ assessment until a proper care package could be sorted, and that worked.

So as pp suggested, perhaps talk to your dad’s to see if she can work through it with your mum.

💐for you all.

@Winterysun think the time has come for him to go into long term care! your mum is not coping and physically must be exhausted!! looking after a dementia patient is exhausting even when there are another two nurses doing it with you, so think how she must feel! it is relentless!!

We did this
It was £20 a session and parent got bath and hair wash.

You're making this about yourself. Your mother is at the end of her tether by the sound of it. It also doesn't sound like you're doing very much to help her otherwise you'd completely get how all consuming and miserable dementia is for families. Perhaps you and your brother need to persuade her that sending him to live in a nursing home would not be abandoning him and would give her some quality of life back in her final years which she deserves too.

From a personal point of view, putting my late mother in a home when her dementia got too bad and we couldn't keep her safe at home turned out to be the best thing we could have done.

I agree.
She's 80
She can't do it.
And she's dumping all her stress on you - which is NOT fair.
It is hard for her to, but she's not being very nice to you - despite you trying to help her.
Get social in and sort out a cafe home.
If she won't do this - tell her to stop missing
It will make you ILL op.
And then who will look after your family?

Please do not feel so bad.

It is easier to be “up” for an occasional visitor than for someone you speak to once a day and see once a week.

Echo other calls to go to the Elderly Parents board. My dad (Alzheimer’s) had a couple of volunteers who came in to eg do a jigsaw or have a walk with him so my mum could have an hour off from the all encompassing worry. But once he became incontinent, it was too much, even with carers, and he went to a home, initially for respite and then permanently

I highly recommend the AD society
They are very active in a lot of areas and they can be a great source of support to carers.
I think your mum needs someone else to offload to and the AD society carers group would be great. Go on their website and see what there is in your local area. They don't usually offer free care but they often have groups that the dementia sufferer and carer can go to together like singing for your brain

DHs grandma died of advanced Alzheimer's in her 90s last year and she was cared for at home to the bitter end by his incredibly devoted aunt and uncle. She was mute, incontinent, immobile and needed feeding but amazingly she could still join in the singing. Something about songs from her glory days still had the power to touch her.

Op
Doesn't matter how terrible it is for your mum - do not let her use you as a dumping ground.
As you mentioned she is quite capable of restraining herself with your brother.
Old people can be selfish.
I have noticed that you can offer them practically solution / help / assistance, and they turn the lot down , and continue to moan
It's almost like they 'enjoy' it.

This. People on there really understand.

What a difficult situation, for you, and your parents, and your whole family, OP.

A care home/nursing home can be a really good place, and the right place to be for a 85 year old person with dementia (I think).

A nursing home with dementia specialists will have all the knowledge about how to take care of your father, and there will be nurses/carers 24/7.

I saw a previous poster who mentioned that a care home/nursing home is a one way street, and that can feel sad, but on the other hand - a person will not get better from dementia. It will get worse, unfortunately.

I'm really sorry OP- dementia is just horrendous, for both the person and their nearest and dearest. You lose the 'personality' part of someone, grieve for that, and then go through the physical decline and grieve all over again.

It sounds like this is all too much for everyone now, and I agree that a care home sounds like the best step forward. I understand that that is easier said than done, but clearly your mum isn't coping. She sounds utterly depressed and stressed (perfectly understandably). Is she receiving any support aimed at her?

You obviously know your mum best- would a firm approach from you a d your brother along the lines of -' we've booked Dad in to respite from x to x date, we all need a break and think this is best' work? This might also help your mum and care services to see that his needs have increased, and might open the door to others suggesting a care home.

A lot of day centres and sitting services won't take someone who is incontinent and needs two staff to change them. Honestly in the end it is a sign that a care home is needed.

It is far better to get him into a good one now than to be forced into whatever is at hand there is an emergency eg fall or hospital admission

It would quite possibly be cheaper than the current care package. The value of the house is not taken into account whilst your mum lives there.

I think your mum needs you to give her a push into putting him in care. I think she can't cope but feels incredibly guilty and she needs someone else to be the person who makes the decision so she can be OK with it.

I would take a lead on taking her to look at local options, talking to the manager and investigating the finances. Get your brother down and agree it together and tell her this is what is best you need to do this. I think she is looking for your permission

She can still visit him every day if she wants to but someone else will do the hard stuff.

We put my granny who said all her life she would never go in a home into one and the only regret I have is we didn't do it sooner. She was miserable and lonely between care calls and even though family members visited her daily she forgot the instant you left and accused you of abandoning her. In the care home she felt safe and stopped crying every day and we still visited her daily. She didn't realise she was in a home in fact so it did not distress her.

It sounds like OPs mum is trying to struggle on and keep her marriage vows but is now not able to cope with the ever increasing care needs of her husband.

I spent several years helping care for my parents before dad died and mum needs to go to a care home with dementia. Dad was always adamant mum shouldn't go to a care home but, as his health and age caught up with him he was often asleep in the chair and mum was lonely, unstimulated and even neglected. Her care home has activities, carers who are happy as they have leisure time after their shift ends and she sees about 10 different staff a day plus the other residents.

And when I see her I can just be her daughter and spend quality time with her rather than deal with her day to day care. It was hard to move her there and I worried so much about it but she is cared for better and with more company and stimulation than she could get in her own home.

you can't 'push' someone into putting their husband/wife into a care home. my dad went in for a month whilst my mum was hospitalised. we realised in that time that the stress of having him in the home was WORSE for my mum, than the stress of caring for him at home. she didn't 'get her life back' AT ALL whilst he was in the care home. presuming OPs mum has POA then it is her decision. increasing home care might be the most useful for her.

Sounds extremely difficult and stressful all round. I think most people in that situation would be in residential care tbh.

Fair enough. Obviously I realise it is her legal decision if she has H&W LPA although actually many people don't (or they have it jointly and severally with their kids) and then it is no-ones official decision it is an MDT best interests decision
I have worked in elderly care for many years and my experience was that many elderly spouses needed 'permission' to make the decision for their loved one to go into care. They wanted the dr to tell them to do it because they felt too guilty otherwise. Often they would cite their marriage vows 'in sickness and in health'
My line was always that you are still married and you can still visit every day and you might find the relationship is better when it's no longer all about practical care and many people found that to be true
It is very common that the move into care comes off the back of an emergency hospital admission which causes bed blocking in the NHS and means the family don't get a choice of their preferred placement which I think is an avoidable harm.
Very few people continue to care successfully at home after the person is incontinent immobile and needing feeding. OPs father already has multiple double up care calls there may be little scope to increase it further.

Hi OP, I was in a similar position with my parents. It was such a dreadful time. I ended up in therapy for a while.
I would say the two things that helped me were accepting that much as I didn't want it these were the facts of life now. And I did what I could to help and my reactions and emotions were no less valid than my parents.
None of this is your fault, you didn't create it and I found nothing I could do helped anyway. This was a hard thing to accept.
As other posters have shared you and your mum are dealing with an impossible situation. Your dad is going to have to have more care and that may well not be in his home.
Health care professionals have different language that they use and my mum listened to my partner who is a HPC when she used this approach even though when I tried to have the same conversation she became angry and blamed me.
You have my sympathy and you are absolutely entitled to feel exhausted and angry and unhappy.

I agree with @ThePure that elderly spouses often need 'permission' to move their loved one to a care home and would welcome someone in authority like a doctor making the decision. I had to make the decision to move my mother to a care home and that was hard enough, it must be a lot worse when it is your spouse who you've lived with for 50 years.

Your mother is right that nothing is going to 'resolve' this situation, but it is a case of taking the least worst option. She may be so tired and stressed she is incapable of making any decisions so allows things rumble on as they are. It sounds as if your dad needs to be in a care home, and one way into that would be respite care which turns into a permanent placement. All you can do it keep supporting her.

“you can't 'push' someone into putting their husband/wife into a care home.”

That is a nice principle. But in practice, OP’s mum is trying to “push” her into helping with the care, because (very understandably, at 80) she cannot cope.

sounds like you have lots of experience, I didn't mean to be snippy, I apologise. I get upset by people insisting care-home is the ultimate goal and in everyones best interests. and I don't like the way that the caring spouse (usually the wife tbh) gets their autonomy taken away. Gahhh, dementia is so so SO cruel

OPs apparent issue is that she doesn't want to listen to her mother moaning about the different aspects of her dad's care when she visits

if he goes into a care home, her mum will still be talking about those things