Does anyone else find having elderly (and unwell) parents absolutely draining?

[Bluespecs]

To the point that running away or disappearing seems like such an appealing option right now?

I am so envious of my friends, none of them have this issue and all of their parents are either in good health and independent or have passed away quite quickly.

My parents live a 5 min walk from me. Mum is 82 and has Alzheimer's (7 years in so far), breast cancer, can't walk far due to being bent over with osteoporosis and also has issues with her heart. The dementia is working itself in quite deep now but she is otherwise quite happy but it's very much like looking after a toddler these days. She can do very little for herself.

Dad is 84 and actually in really good health but he is miserable from all of mum's issues. He has always been a difficult character but over the last few years has become worse. He is now so very bitter and he is very difficult to deal with at times. He has fallen out with everyone (including neighbours) and has become obsessed with moaning about absolutely everything and everybody. He does not care what he says to us all and can say some very upsetting things. He refuses to acknowledge that he is depressed. It is beyond draining.

We have all the practical stuff in place. Full POA's, Attendance Allowance etc. Mum goes to a day centre two afternoons a week and there is a carer in every day to help shower and dress mum. Mum has had respite care in a local care home but not sure if this is good from her as she came home very confused. And having viewed quite a few local care homes, all with great reviews and ratings, we are not sure what to think of care homes.

But regardless of all the practical stuff it's the emotional turmoil which is so hard on both my sister and I. Watching my lovely mum slowly dying and losing her mind and us having to put up with my dad's constant nasty ways.

I am so tired of it all. I love them both dearly but bloody hell, it is so draining having elderly and unwell parents and the fact that it's dragging out for years is down right depressing. I honestly wasn't prepared for this, all my grandparents died quickly so I never saw my parents struggling with years of caring. I genuinely imagined my parents would go in a similar way.

Does anyone else really struggle watching their parents coming to the end of their lives?

Sorry you’re going through this OP, I’m not there myself yet but as a nurse see the toll it takes on families every day

yet we have people saying we should be caring for our own relatives at home like they do in other countries when it simply isn’t sustainable for everyone

I agree, it really isn't sustainable and most of those countries rely heavily on the women and daughters to look after their elderly as they did years ago here. Both my grandmothers cared for their parents and it wore them both out.

I try not to be too sniffy about comments on British culture by others, because I think you'd have to be out of it to think how we manage our extreme old age is how it should be. Also there's no doubt that a cultural agreement for the entire extended family to muck in, and for families to tend to live in multigenerational homes, really does or can make caring for people who need it less demanding on each individual. Ive seen plenty of male members of families in other cultures pitch in too. But it is also true that there are now a handful of care homes set up for Asian residents (plus plenty of Asisn residents in other care homes) and the reality of a working and growing family caring for multiple elderly people all reaching extreme cognitive and physical frailty at once, does often look a bit different from the rhetoric.

The idea of heading straight to Dignitas has been in my head as well, but again in reality many couples care for each other for a long time and very often both of them have cognitive decline past what Dignitas would accept by the time things are really difficult.

@permanenttemporary you raise a good point. Our neighbours are Asian and very family orientated. Both famous have elderly parents living with them and it is the women who seem to do the caring. Also now as grandmother's so their successful Dr/Dentist daughters can work easily and progress far.

I wonder whether their professional daughters will be giving up their careers in their 50s to look after their parents and grandchildren?

My mother looked after her parents and my grandmother looked after hers. My grandmother also looked after me to a significant extent which privilege was not afforded to me by my mother. Our mothers are now in their late 80s and we live 100s of miles away. MIL has carers, mother still manages but when they can't it will be fulltime carers for MIL (her dd's live abroad) and a nursing home for mother.

My only advice is go for care home sooner rather than later. We struggled with MIL due to her dementia. She hid it well at first due to being able to use "muscle memory" to carry on her daily routines, but she really hadn't a clue what she was doing nor why - but as long as she did the same things every day, she was fine. It was that which meant we missed the "right" time to put her into a care home or get carers in. Her eventual decline was very fast - by the time we'd started talking to home care firms, she needed residential home, by the time we started talking to residential homes, she was in hospital, and ended up dying unnecessarily at that moment in time due to being ignored and neglected in hospital! Our main regret is not getting daily carers in a lot sooner and not getting her into a care home where she may well have actually got the care she needed when she started struggling with health (easily cured conditions!).

Trouble was that she never accepted she needed any care. She could wash herself, cook for herself, etc., so never understood why she needed care. In hindsight we should have insisted and forced her to have some care at home (other than us), as she'd then have got accustomed to people coming in to do things for her (besides us). She even refused a gardener, confident in her thought she could continue looking after her own garden, but every single day, she'd "forget" to go and and do it - for two years and then virtually kicked a gardener off the premises who we'd arranged to give it a good clearance at the end of the season as a one -off - convinced she could do it herself!

So, our "take" from this bad experience, is do things sooner rather than later, and little and often, just to get them accustomed to "non family" doing things for them, and then likewise, get them into a care home before they get too bad, so they have time to adapt and get used to their "new normal" - no, they won't like it, but if dementia is advanced enough, they'll probably forget where they used to live - our MIL couldn't even accept she lived in her own home that she'd lived in for 25 years - always harping on about "who's home is this", "where am I", "when am I going home" etc - in her own home! Sometimes you have to rip off the sticking plaster!

I think it’s a lot easier if you don’t live near them. Mine would be driving me mad if they were in the same city. As it is, they’re too far away to be visited in a day trip, which necessarily limits what can be done practically. There can be no “popping in”.

And I had a bit of a revelation a couple of years ago with the help of this board. It was in terms of my priorities. I was getting a lot of pressure to do more for my elderlies. But I have a mortgage to pay and children to feed, clothe and house. Did I want to involve social services with my elderlies or my children? Couldn’t do both and of course my children come first.

Absolutely your children come first.

Yes I agree it’s easier if you don’t live near them. They complain to us about my SIL not doing enough of the “popping in” which they do expect as she lives nearby. But we always stick up for her and remind them she does a lot. She does way more than us so it’s unfair she gets the criticism more than us - or the other sibling who lives abroad & only visits a couple of times a year.

There is sexism here at play too I think - they expect more from her as a daughter than they expect from their sons.

Agree with everything you wrote. Moving into care home hasn’t made things much easier. Can’t wait for it to be over.

I feel the same way.

I know several people on here have said to consider a care home but I genuinely can not see how it will make my life any easier. I have visited several homes now whilst viewing them for mum and I find them all thoroughly depressing places, people just sitting there waiting to die and nothing will be familiar to mum.

My parents have enough space in their home and lots of money and I would rather my dad agree to live in carers (sadly he won't though) and mum can stay in the home she has known for the last 52 years. I would rather mum died whilst still residing at her own home.

Having been through this I sympathise greatly.I went though this over the space of 10 years with mum, dad and MIL all at the same time.
Both you and your dad are trapped in a cage made by your mums dementia.
'Care in the community' imo does not work as the level of support from health and care agencies is insufficient.Unfortunately, British custom is that a spouse or child should step in to do the caring, but thats a view from years ago when there was more extended family to help and women didnt work. It simply doesnt apply to many modern families.
I agree with many of the points of previous posters. Mums condition will only get worse. Sadly there will come a point when she will not recognise if her needs are being serviced by a family member or a professional carer. Putting her in a care home now whilst she has some capacity to adjust will be better for both your and your fathers mental health.
You will both be able to relax a bit in the knowledge that mum is being looked after. Dad, if he is in good health will be freed to have a life of his own, possibly socialise more and that might help his depression. If you get a good care home for mum that he could regularly visit, he could have more to say to her when he visits and be able to walk away at the end of the visit without guilt.
If you have POA Health/finance for mum I would activate them immediately. If dad has the POA you are stuck. He might be trapped in thinking that it is his 'duty' to look after mum at home. You would have to try and persuade him that neither of you can cope with the current arrangement and mum needs full time care.Their GP might help you to persuade him if you can get him/her on side,
This may sound brutal and selfish but I waited longer than I should have to put Mum and MIL in a home. I listened too much to other peoples opinions on family obligations and started to suffer mentally as a result.
My lightbulb moment was realising its ok to put yourself first sometimes and you can often be more effective by working to your strengths. For me this was by organising finance, working with the carehome on enrichment activities and representing residents in the carehome monthly meetings.
Remember, you too only have 1 life.

It is just so relentless

It really is.

It’s worth thinking about whether the care home seems depressing because it’s not what you would want (as an adult not in need of care) vs what would be best for your elderly relative. Are the ones just sitting around aware of what they’re doing?

The two of mine who did go into care homes (one residential, then later nursing) it was an incredibly positive step, relieved a lot of anxiety for them as it created a whole contained “safe” world. Where they weren’t going to be asked difficult questions or have to adapt to different people. One of them had pretend shops and a pretend bus stop so residents with dementia could believe they were going somewhere or following a long ago routine.

I get what you're saying about how the inequality of care needs of elderly parents can exacertbate feelings of resentment. DH's dad died aged 81, heart attack, with all his needs having been dealt with by his wife. DH's mum died about three years later, having been entirely independent (managed big downsizing move entirely by herself for example) and only needed 2 months of care following a terminal cancer diagnosis.

DH was very sad when they died, but it was a pure sort of sadness, not tinged with resentment or terrible memories. He thinks he did some caring because he spent one night a week at his mum's for the last two months but he wouldn't have known the name of their GP, their NHS numbers, their gas suppliers, their bank details etc, etc. He did have any managerial input to add to the emotional and practical one. He didn't have the burden of making decisions on their behalf.

My best friend similarly had her father die quickly aged 85 and her mother is gadding about in her 90s. She's always sending me pictures of her mother doing extraordinary things - cocktails! ballooning! travel! - and tells me how she gives all the children thousands out of her unspent income. I eventually said, I'm sorry if I'm selfish and mean and I know your mother's brilliance doesn't make my mother's dementia any worse, but i find this quite upsetting.

When you have children, you sort of know the score and how things will progress (obvious massive caveat to this is children with additional needs). And you sign up for it and it's often wonderful. But I stupidly found the last five years unexpected. It's also the fact that every day they get worse - it's so unrewarding to have a job of managing decline, where you're doing well if they get less worse than they would have done without you.

PS copy that about care homes from @EmotionalBlackmail . I find my mother's one really really depressing, but obviously I'd be depressed as an able-bodied 50something without dementia if I was stuck there. I think she's at a 5 on a wellbeing/happiness scale for her condition. I think if she'd stayed at home and I'd moved in (leaving my three kids and husband) and done everything, she'd be at 6. That just isn't worth me going from an 8 to a zero.

@Bluespecs that is a lot to deal with. No one prepares you for this and it is an immense and often deeply unrewarding burden caring for ill and elderly parents. I think you are doing really well to stick with it all and strongly suggest that every now and then you do allow yourself to run for the hills or scream into the great blue yonder.

It probably feels like it at the moment, but it doesn't last for ever. I remind myself of this constantly when dealing with my own ancient and very demanding DM. Not that long ago DF was there too driving us all nuts with his complex healthcare needs and then suddenly he was gone.

I'm not religious but I also pray every day to take DF quickly. A heart attack in the night would be so much kinder than the continuous but seemingly endless decline we have now. It sucked the life and joy of the the last few years of DMs life caring for him, and its now doing the same to me. The thought of this going on another 5, 10, maybe even 20 years, is unbearable. Solidarity to all here.

Reading all this, I miss my dear Mum, who died relatively quickly from heart/diabetes issues just before the pandemic.

She frustrated so many of her friends and family by not doing as much about her diabetes as she could have, but she always said she knew the choice she was making.

I still think there could have been a middle way - but I'm glad, also, that there wasn't an endless, miserable decline. She was living her life to the full a month before she went, and died with her marbles intact.

She herself had ended up with a nervous breakdown after being the carer for 3 elderly relatives in succession - in a time when there was very little help, and with a job and a family.
Always told me to put her in a home if needed. Miss you Mum.

This is what I find over whelming, too; I sobbed to DH the other day 'I might have another 10 years of this!' My parents are 'young'...78 and 81... we were told DM had 3 weeks to live in dec2021. She's still here and whilst bed bound, now with dementia kicking in, she's doing ok. DF is exhausted with the responsibility of it all. I just seem to want to cry all the time. My poor DH!

Cancer used to always kill. My mum survived it at 68 and is now 93. But I started doing a lot for her when she got cancer. I didn’t mind. I wanted to help. Just never thought 25 sodding years later….

@rosesandhellebores women already do step back at 50 ish. Some due to menopause, a lot due to overwhelm. No one talks about it as we don't matter in a society that is still fundamentally patriarchal at its core. I hate it.

@Twiglets1 re: stepping back. It really isn't that simple. I tried. I really did. I have a difficult and distant relationship with my M. And DF lives 10,000 miles away. On paper this should have been the easiest thing to step away from. Turns out there is always paperwork, always something you have to be involved in doing especially as an only child. Expectations from wider family. Parents who made no provisions. Did not discuss anything with me (it's a fairly standard MO to be fair. I don't know why I am so surprised/hurt). The statutory services. They all just think I am there to pick up the pieces. Just sinply trying to keep boundaries in place is exhausting in itself and it's breaking me. I really feel for anyone having to do more.

It really is so difficult with my dad as he is not an easy man to deal with.

He is blinkered and thinks we are all managing by and can not or will not see that it is causing us all so much stress, he will tell my sister that I am just a stressy person, always have been and that she handles things so much better than I do (thing is that she doesn't go round as much as I do as she works full time and she has no children, so when she gets home at night she can relax).

I understand that my dad does not want to admit that his (their) life has taken this road and it will only get worse but 7 years from the diagnosis it really is time for him to be adult about this but it has been a battle all the way to try and get him to agree to so many things that would help. It took years to agree to the morning carer then another 6 months or so for the weekend carer, now we are trying to get the weekend carer in the evenings which he won't agree to. It took 2 years for him to agree to the respite this year and he says point blank that he does not want mum in a home yet. I have had social services round several times to talk to him, mum's GP has spoken to him and an Admiral Nurse too but he just digs his heels in.

This makes the stress of it all so much harder when you have an awkward and hesitant parent putting obstacles in the way all the time. It is so exhausting.

None of this is helped by my sister forever taking his side by saying things like 'I have tried asking dad to change this mind over his or that but he says he doesn't want to, we can only but try, it's his decision at the end of the day' and then she will tell me to drop it. I then look like the bad guy as I am seen as pushing for something that neither of them want. It feels very one sided at times.

And to top it all, DH and my dad have fallen out. DH and I have been together since we were 16 and dad and he always got on really well but since all of this dh sees how much this is affecting me as the stress has triggered all of my chronic health issues and making me feel crappy most days. So he now refuses to see my dad in case he says something he wishes he hadn't. He is furious that my dad has so much money and yet relies heavily on my sister and I to do so many things for free. My dad now feels resentment towards my dh for not visiting him and wants to know why but I can't say as that will cause further friction, my sister is always pushing me as to why dh doesn't visit anymore (why she gets involved I don't know as I wouldn't give a crap if her dh didn't visit my parents).

It's all a stressful nightmare and a life lesson to DH and I to sort as much as we can for our old age so we never put our dc through this.

Mum's day centre is very much like that, a really happy and positive place, just need to find a home that has a similar vibe.

The care home that mum has recently had respite care in was a lovely place, privately run by two sisters and the home was previously their family home, it really had a nice feel and the staff were lovely. We visited several times before mum went there and witnessed the activities they did and everyone seemed happy but it still had a very weird and dreary feel to it which I can't put my finger on. My sister and dad said the same.

I admit that I am hesitant to put mum in a care home, we have had several visits from SS and each time the ladies have said if we can it is best not to put a loved one into care. I keep thinking about this a lot and it does seem so cruel to put mum in care.

I think we probably need to look at more care homes before any decisions are made.

I am just sad that my parents have an annex on their property and plenty enough money for a live in carer but dad is refusing to agree to this. I would have loved to see my mum see her days out in the home she has lived in for most of her married life.

Sittingontheporch

When you have children, you sort of know the score and how things will progress (obvious massive caveat to this is children with additional needs). And you sign up for it and it's often wonderful. But I stupidly found the last five years unexpected. It's also the fact that every day they get worse - it's so unrewarding to have a job of managing decline, where you're doing well if they get less worse than they would have done without you.

Exactly this. I knew what to expect when I planned to have my dc, I brought them into the world and will always be there for them as they are my responsibility but tbh it never occured to me that I may one day be caring for my parents, they never did with theirs so it wasn't something which ever crossed my mind but here I am.

Thank you. It's easier to deal with when I talk with others who are going through this or have been through it. None of my friends have this in their lives, not atm anyhow.

I do worry that when mum goes it will be a huge relief but then I'll be overwhelmed with the guilt of feeling that way especially as I have always been so close to my mum.