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

@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.

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.

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.

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.

It really is.

It is just so relentless

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.

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

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.

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.

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!

@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.

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.

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

My mum, at 90, lost all interest in
life and quickly became frail and immobile as a result. She and my dad refused any external help (like carers) so the burden fell mostly on my dad. And a burden it was as he was practically carrying her up and down the stairs.

It was a relief when she died, tbh.

The Dignitas solution sounds tempting, but relies on getting a terminal diagnosis whilst you are still capable of arranging your own trip to Switzerland. Everyone dies of something but for the majority of us it’s not some grand diagnosis, but death by a million paper cuts instead, each new frailty or health issue too insignificant to take note of at the time.

The reality is that most people ultimately are tenacious, clinging on to life in whatever shape they can even if that involves sacrificing their adult DCs or anyone else in their path who can provide help.

I am witnessing it now with my DPs. They have had a great innings DF91 and DM86 without any external help until last month when DM had a fall and the wheels have fallen off the bus spectacularly. Thank goodness we live in Scotland where DM gets free carers 4 times a day or goodness knows where they would be. For about the past 5 years they have said “throw us in a home when our time comes, we don’t want to be a burden “ but now when I suggest that they need more help than I can provide what with living an hour away and working full time ( and thank god I have that job otherwise my life would be consumed by them) but no, despite being ridiculously rich, they don’t need any extra help apart from a cleaner once a week. They clearly do as DF is losing his memory, but I am determined to only do what I can, not what they need.

My new mantra is that their independence cannot come at the cost of mine, and yes I do think mine is more important due to my age.

I hear you.
I was NC with my dad, so once he died last year, I chose to try and build a relationship with my mum. It has shocked me how he left her in such a mess. She knows nothing about their finances. My brothers have POA and are executors. I do not, because dad was a misogynist. They have ground to a halt and she has no idea how much money she has. She is 81, physically disabled, living on her own in our childhood home, which is large and falling apart around her but she doesn't know if she can afford help and can't do anything for herself, not that my dad was any better judging by the state of the place. So I go over every weekend and am trying to get it sorted, de-mothed, find her an electrician, plumber, cleaner, gardener, window cleaner etc. Every week there is a list of basic household maintenance to be done. My brothers have barely been over in months and when they do, they do nothing productive so until they sort dad's will and get her money sorted, I (and husband) am cleaner, gardener, laundry woman etc.

My husband has massively stepped up, going far beyond what any son in law should be asked to do. He and I were separated for a while, husband had another relationship during that time, which I have moved past. But apparently my brothers haven't and when mum called one out for how little he is doing, he made a disgusting comment about how at least he hadn't been off shagging another 'bird', so I guess the apple didn't fall far from the tree. My relationship has zero bearing on how little he is doing. If they had been doing their POA work properly, mum wouldn't be in the mess she is in now.

I should start a thread of my own. I am just so tired physically today. I also have a full time, high pressure job, and teens at home, who are being left to themselves far too much while I try and get mum to a place where she can look after herself.

I understand you love your mum and only want what is best for her. But you have to also prioritise your own health and happiness.

You don't appear to have such a good relationship with your Dad. I would try to reduce the emotional strain of trying to look after him and be the perfect daughter.

It also sounds like your mum could settle in a care home and if she has Alzheimer's, would she even notice if he wasn't visiting her? You would know she was safe and her needs being met.

Your comment made me gasp out loud. Unbelievably callous.

I hear you.

My mum is 90. My older, single unmarried sister lives with her and cares for her. but my brother and I cover the 3 days when my sister is at work. I also care for my son at home, who is only 21 but has severe mental illness and leukaemia. My husband's mother is 84 and lives round the corner. He's there every evening and often at the weekends, because she's alone and has really poor health. His dad passed away in 2023 at 90, after having 18 years of declining health due to a stroke.

My father passed away at 80 after a short illness, and with all his mental faculties intact. I'm so, so grateful I didn't have to see him lose his independence. My mother is so loving, but is very depressed and frail now. She hates being disabled.

Caring is very, very tough. :-(