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?

I agree with all that. We went through MIL's dementia and it was draining and soul destroying. Instead of actually spending quality time with her, we were always fire-fighting, doing chores, etc. Living in her own home, on her own, was simply unsafe in so many ways.

We once got a phone call from her in the middle of the night saying her electrics weren't working - spent ages trying to talk her through flipping the trip switch in the electric cupboard (something she's done many times previously), but she was incapable of following instructions and after an hour on the phone, we gave up and went down. Once we were there, we quickly found the reason that it had tripped. She'd cut the cable to the TV with scissors! She couldn't remember doing, couldn't remember why she'd done it. We can only assume she'd forgotten how to turn it off with the remote control and forgotten about unplugging it or turning the socket off at the wall, and decided the "best" way was to cut the cable!

That was only one example.

Trouble in our case was that her other daughter was adamant that she wasn't going in a care home, so we were stuck with the status quo. It was only a few months later, and several other "dangerous" episodes, not only risks to health and injury, but also giving money to strangers, being conned by a random tradesman into thinking her home needed a lot of work doing, etc., that her daughter finally realised she wasn't safe at home. But during the time that we were arranging care, she deteriorated so quickly and then died.

Now, after her daughter seeing the demise, she finally agrees with us that MIL should have been in a home probably six months or even a year or two earlier. Both her children now bitterly regret "wasting" the last months of her life being stressed out by caring for her instead of being able to spend quality time with her!

@Bluespecsreading your updates it feels like a lot of your issues are caused not just by your DF being obstinate and refusing to spend money on care but on your own internal monologue where guilt and regret feature heavily.
I likes how a poster had phrased it up thread, how doing everything that her DM would have wanted would have increased her DMs happiness from 5 to 6 but decreased her own from 8 to zero.

Sometimes you have to push for the least worst option as there is no really good conclusion. It sounds like your DF may be more amenable to your DM being in a care home as he agreed to respite, than he would having a full time carer at the home. It also means you could visit your DM without having to interact with your DF.
If your DM was her old self how would she want you to be living your life ? Would she genuinely want you to sacrifice so much of your family time to support her ? The care home is never going to be perfect but you could spend quality time with her there.

Pick an option and advocate heavily for that. It’s the only way to break out of this impasse.

My sister and I would be content with a care home (even though we would both prefer the care to be at home) but our dad doesn't want to spend the money.
I can not emphasize how hard it has been to get him to agree to the simple things such as the carers and the day centre and it's all because of the cost. If they were all free he would have everything available to him. He constantly asks me to check what he's entitled to even though it's very little as he has a lot of money. He's tight and mean with his money, always has been sadly and now in their hour of need he is still being very obstinate and hard work (even getting new clothes for mum as she's put on so much weight from her medication is hard work).

He moans about the cost of everything. I have started threads about this in the past and people have told me to go over his head due to our poa status but that is so much easier said than done especially as my sister will often back down and side with dad. It is so very tiring and frustrating, a brick wall scenario at every step.

@Badbadbunny sounds like my mum. She regularly (multiple times a week) switches off the power to the central heating and then calls British Gas out because the heating won't come on. When you try and talk to her about she not only has no idea who has turned off the heating, who is calling BG but insists they haven't been out all winter. DB manages to cancel the majority but they've been out several times. I spent Christmas Day sorting out her freezer because she had rammed it so full she couldn't open the drawers, decided it was iced up and so left the freezer door open for hours at a time with the result that each drawer was a solid ice cube full of stinking food. But she's still deemed to have capacity to choose to live at home.

Oh yes, I'd forgotten about the British Gas callouts. MIL was the same. She'd got into the habit of turning off all the radiators at each valve when she went to bed at night. Then wonder why they were cold in the morning and couldn't think to turn them on, so she'd phone BG to get them to come out and "fix" the boiler as she was under contract with them. Heaven knows how many times she did that as she couldn't remember calling them, couldn't remember them coming out. We'd only find out by accident if the engineer happened to come whilst one of us was there with her, which seemed to happen quite a lot! We'd tell her time and time again either not to turn off the radiators or to remember to turn them on again in the morning, we'd leave sticky notes on the radiators etc., but she'd not bother reading the notes or not understand what they meant or not think they meant what they said! It was all very demoralising. We actually got a BG engineer to remove the valves so she couldn't do it, but then she'd turn off the boiler at the switch or turn down the thermostat, and, of course, forget to turn them on again, so she'd phone them to call them out again! I sometimes mentioned it to the engineers who came out and they all said it was very common among older customers and they didn't mind (at engineer level) as they were simply/easy/quick call outs!!

We leave notes for mum. Either to remind her about appointments/events or not to turn off power etc and she removes them as "it's treating her like a child and there's nothing wrong with her memory".

I can sympathise with you all, it’s so hard and so tiring.

My Dad’s 92. Mentally he’s still pretty sharp but his body is giving up. He lives alone since my mother died 2 years ago, he’s 2 miles away from me but as I don’t drive (I’m having lessons and failing miserably at tests) it’s a 30+ minute walk away or two buses, obviously if anything happens whilst my husband or our sons are home then it’s easier to get to him. My sister lives an hour away.

He’s had heart valve disease for some years, surgery wasn’t an option when it was discovered and he’s lived normally with it until recently. His lower legs are now swollen and he’s constantly dizzy, both of which point to the condition worsening and heart failure, and it means he’s unsteady and is falling on a regular basis.

The issue we’re having is that he won’t stop doing what he’s always been doing, mostly gardening. He still thinks he’s fully capable and has been jet washing the drive and patio in the last week, the week before that he was moving shrubs from the back garden to the front and replanting them. Last month my sister called me to say she couldn’t get hold of him by phone so could I go and see if he was okay. I found him flat on the patio, unable to get up, after falling while mowing a lawn. Last night he fell again while out in the garden, this time badly cutting his head which required another A&E visit for stitches. He’s been there three times in the last six weeks.

He won’t take on board that what he’s doing isn’t necessary, one of us will go and tend his garden and he’s not scared to ask for help at all, he’s just impulsive and when he decides he wants something doing then it has to be done there and then and he won’t wait until one of us has time to do it for him.

It’s so frustrating when he does fall in these circumstances as he often needs A&E which means one of us has to accompany him and sit there for what has been anything between 5 and 9 hours while waiting for him to be seen and treated.

I hate that every time my phone rings and I see his name as the caller I dread to answer it as I’m wondering what he’s done now. We’ve been planning on moving out of the area once our mortgage had been paid off, which it now has been and we’ve seen some new houses being built in an ideal location, but I’m conflicted because I don’t know if I should move away too far from him while he needs help but how long can our plans be put on the back burner? We’d certainly miss out on the houses that we like if we stay where we are in order to be near him.

Back in 2020, not long after being hospitalised for 3 weeks with septic arthritis I caught my dad trying to hook a faulty pump out of the garden pond with his walking stick. He also had fairly severe arthritis and osteoporosis. He was holding on to a spindly shrub for "stability". Mum was oblivious to the potential problems and thought I was fussing too much

I don't now about you OP, but when my parents and in laws were my age all of their parents were dead. We really are the first sandwich generation.

Many of us are looking after parents who haven't had to do this themselves, and they have no idea how hard it is.

A friend of mine was recovering in hospital a few years ago when an elderly woman with Alzheimer's was admitted to the (surgical) ward. Her daughter who was her carer had had a heart attack (in her 50s!) and was elsewhere in the hospital and there was nowhere else for this lady to go.

The poor daughter had teenage children too, she must have been run completely ragged. So it's not a selfish or unrealistic scenario.

We have a similar issue with our dad. He still thinks he's 30. Last year he fell off his step ladder whilst cutting the hedge and luckily didn't knock himself out because mum would have had no idea how to phone any of us (she probably would even know he was lying in the garden), since then we've been trying to encourage him to wear a fall and call monitor but again he won't pay. A few months later I happened to be driving by their bungalow to find him climbing a ladder to get up on the roof to check some loose roof tiles, the stress of worrying what he's up to is never ending.

DH is planning on retiring in a few years. Our dream was to move and run our own small caravan site but it's an impossible dream whilst my parents are still here, we will probably miss the perfect time slot in our lives to see our the dream though sadly.

Be careful putting your dreams on hold. The lady that lived in the flat below mum had quite bad dementia her daughter lived round the corner. She visited most days, one day she visited didn’t stay long went home and had a fatal heart attack, she was only mid 50s with two daughters.
The daughters continued to look after their gran for the next five years.

The F.O.G. (fear, obligation, guilt) is truly horrible. Us in their 50s, as someone else said, are the sandwich generation. My DM lost both her parents when she was young and my DF went NC with his parents when he was in his late 30s so neither had this pressure so don't understand how we could be feeling stressed with it all!! 😑 my brother has gone AWOL (glad in a way as he's an utter a-hole) so it's all on me.

OP, you're between a rock and a hard place, like so many of us. If you go with your dream, you'll be eaten up with guilt but if you don't follow your dream, you'll be eaten up by regret and resentment.

Someone posted on a different thread about the fact that you should always choose guilt over resentment. Easier said than done.

Don’t put your life on hold. I heard recently from a friend whose mother had finally died. She’d moved in with her to care years ago, barely seeing her children for weeks at a time as it was some distance away. One child is now an adult and has left home, the other about to finish A Levels, then go. She’s completely missed her children’s teenage years!

And for what? To keep her mum out of a care home?!

I concur with living with guilt being better than resentment. Posted this before but it is really useful
https://outofthefog.website/toolbox-1/2015/11/17/fog-fear-obligation-guilt

As my DS said sometimes modern medicine is too good. I know that’s awful but it’s true

Ah thank you for this. A timely reminder.

I come from a long living family. My great grand parents lived into their eighties and my grandmother and her siblings were all in their nineties. Dementia was never a thing and all lived independently until they died.
Even my DM and DFs generation have lived well into their eighties and some are still going strong.

Unfortunately, both my DM and DF died relatively young so we have not had to see them age. However, judging from the rest of the family they would not have caused us too much trouble.

My DGM sort of looked after her parents. She didn’t work and was self appointed carer, she was a bit of a martyr, and in hindsight a very bright woman who struggled being at home 24/7 so filled her time “looking after” her parents, but that was the life she chose.
I think, back in the 60s and 70s it was a given that you looked after your parents. Many of my friends had multigenerational households.

Today, with the growth of the care home sector people find it much easier to put their parents in carehomes or bring in carers. But in the past, looking after elderly parents was just the norm. I know that my DM fully expected to move her DM in with them at some point, and they bought their final home with that in mind.

With the introduction of the welfare state, looking after parents was transferred to the state. So a whole generation were let off, so to speak, but with the collapse of the state run care home system and a move to the cheaper option of care in the community we are back to the same problems pre welfare state. But now with a generation that don’t see it as the norm.

I don’t subscribe to the idea that we are the sandwich generation. Moreover that our parents were the generation that didn’t have to care for parents because the state did. Dementia was hidden behind closed doors in institutions. In the same way that disability was.

As a young professional I used to visit two nursing homes packed with dementia patients. The state run one was similar to hospital ward, no privacy or dignity and with a high level of security. The privately run home quiet and rather sad because the patients were heavily sedated and sat in chairs in a circle in large rooms.

Things have improved in care homes but at a huge cost with many dementia patients now left in the community far too long. Because our generation were somewhat shielded from the dementia patients hidden away until the 1990s we have no real experience of the disease.

Having seen the different approaches back then neither were a dignified end to life. The state run dementia facilities were scary for staff, patients and visitors. Imagine 20 individuals lumped together 24/7, who are strangers and no longer able to recognise their own family never mind form new relationships with those around them. But the private homes were like living morgues full of heavily sedated bodies just about breathing.

I, for one, will be insisting on voluntary euthanasia if at all possible, if I develop dementia. I really don’t want my family to witness what I saw.

@Angrymum22

Today, with the growth of the care home sector people find it much easier to put their parents in carehomes or bring in carers. But in the past, looking after elderly parents was just the norm.

You're missing a few important societal changes.

Firstly, more and more families need two working parents these days - the days of being able to have a single "breadwinner" and a stay at home parent are long gone for most people. House prices have risen so much (as have rentals), so two workers is pretty much essential. That means that there's no-one "home" to look after elderly parents either living with them or living nearby.

Secondly, with the concentration of the decent job market into major cities like London, along with half of 18 year olds being encouraged to go to university, families are fragmented and many graduates don't return to their home towns for work - they stay in their Uni cities or move from Uni to larger cities for jobs etc. So there is a much reduced "close family support network" for the families of graduates and professionals out in the regions. Families don't live on the same street anymore like they used to do, so the "wider" family isn't available to help out, i.e. the ageing parent's siblings, nieces/nephews etc - who are all probably spread all over the country. My MIL had four siblings - none of them lived in the same county let alone the same town! Their respective children were likewise diversely spread over the country so nieces/nephews/cousins etc weren't local either to help their parents nor their uncles/aunties.

Thirdly, people are having children later because they can't afford them whilst as young as was the norm in previous generations, so a couple may have young school age children at the same time as they have elderly parents needing support, all at the same time as them both trying to work. You can't keep expecting more and more of one or two people whose time is already being split in different directions.

We've just had a decade of looking after MIL. OH has had cancer requiring monthly hospital visits for 7 of those years. Both he and I are self employed, so no "sick pay" or paid time off work for us. We've put our son through his A levels, Uni, and setting up his flat in a different city over the same time period (no jobs for his chosen profession in our region, so he'll never come home to work again!). MIL got progressively worse with her dementia. There's a limit to what DH could do, what with work, cancer, a Mother suffering dementia, and supporting a son through Uni during Covid lockdowns. We had nothing left to give and so MIL had to largely fend for herself - he went to see her daily, and did what he could, as did I, but on days when he was struggling with chemo, she had to "put up and shut up" without us because she was adamant she didn't want carers and wouldn't go in a home. We could do no more for her but she clearly "expected" us to be there 24/7 and complained constantly when we weren't. That's the reality of not having other family close by, not having a family support network beyond a couple of people who have other lives to lead, their own health issues etc.

@Angrymum22 I think @Badbadbunny is right. There are different, previously unseen, societal and demographic pressures at play here, combined with an increase in the ageing population due to the post-war baby boomers. The latter we knew was coming, but successive governments and individuals have failed to plan appropriately. And women work now for much longer, in often full time roles combining rearing their own children with looking after elderly relatives. I still have school age kids. My friends who are in a similar position either have school age children or grandchildren they have to step into care for.

Finally both my parents "aged" early in comparison to previous generations of both sides of my family. What went before is not a signal for what will come after. Medicine, lifestyles and expectations have all shifted. That is even before you factor in a care system at breaking point. Nothing can be taken for granted.

We also have to remember that whilst "care homes" seem to be a relatively new and growing thing, back a few decades ago we had huge "convalescent" homes, OAP homes, etc., where the old were kept in large wards. So we DID put elderly people elsewhere other than their own or their family homes. We had three huge places in our small city - all now closed, demolished etc. Hundreds, if not more than a thousand "beds" for elderly, confused, disabled people. I remember going to see elderly uncles and aunts, and a couple of my own grand parents in them, all long term stays, basically somewhere to "park" them until they died! So they certainly weren't all being looked after at home by family - there's always been those with no one to look after them, always been those to ill to be at home (there's or someone else's) and always been those with dementia etc needing special care. We've just seen a move away from "institutions" to "care in the community" either at home or in small private care homes.

Back on the late 70's I had summer jobs in a hospital. I worked between 3 wards. 2 were large wards for long term geriatric patients. There was only one way they left.Those patients would be in care homes now and would probably fill 2 slightly smaller than average sized homes. As a Brownie in the 1960s we would go to 3 care homes to sing Christmas Carols as our good deed (given our singing talents probably moreover like an inescapable torture). Long term care outside the home is certainly not new. And care homes are certainly an improvement on those 2 wards.

Don’t forget too that people used to be kept in hospital a lot longer after operations. So for a joint replacement you’d have been in for at least a week, if not longer. So receiving care, meals, physio. Also rehabilitation or cottage type hospitals existed as a sort of middle step between hospital and managing at home. So when they did get home any family support required was much less.

Yes, discharging them earlier means less likelihood of hospital-acquired infection. But the reality is they’re discharged the day after surgery, often with little support in place and an expectation of family members running around to do it all and organise it all. Who does the shopping, makes the meals, gets them to physio appointments?

And two generations above me, yes, one woman, often the eldest daughter, would care for parents. In the example I’m thinking of, she was denied permission to marry, so gave up any hope of a family of her own, because she was there to look after parents. But brothers were expected to support her and she was provided for in their wills.

It would be totally unacceptable now for that to happen. Thankfully.

That is so sad.

My mum's carer was caring for a lady with dementia, her daughter lived with her. The lady died 3 months ago and the daughter has been in hospital ever since as she had a massive breakdown and is still unable to be discharged. The years caring for her mother broke her.

This is my MIL...just had knee replacement. Out of hospital within 24 hours. Her daughter (my DSIL) had the task of picking up the vitamin drinks prior to mil's admission, ensuring the did her showers with the special shower gels they provided, cooked and bought food to stock up her freezer and loads of other stuff...whilst she also cares for her DH who has a multitude of health issues too. She's nearing a breakdown for sure 😵‍💫