Mother in assisted living 'wants to go home'.

[gemstoneju]

My mother is nearly 88, widowed three years, with dementia though physically very fit. She was living alone with a lot of support from us until a month ago. My brother is a shiftworker living 10 miles from her, and I am a single parent with SN kids. We struggled, and she was very isolated (and complaining about loneliness). And unsafe, by definition. The only carers we were eligible for could only call for five minutes once a day, and the company was pathetic, tbh. Useless staff who breezed in and out, signed a log, and didn't bother heating her a meal. Half the time she missed her medication. She took a fall in the NY and broke her arm, and we decided that it would be best to find a supported living place more local to us. We got one specifically for people with dementia, own flat with support, it is lovely, lots of activities every day. Gardening, your own little plot too. I mean, you'd think it would be ideal, wouldn't you?

Instead she is fretting and unsettled. She keeps telling me she 'wants to go home'. My mother has never been very sociable and a bit remote with people, while complaining of isolation too.

I am bloody soul-destroyed at the thought of having to live with this from now on. I feel guilty too. Has anyone ever experienced this? Does it get better? Should we try to move her back home and pay for a private carer (who she'd probably resent) and muddle on ourselves? Does anyone have any experience of doing this? Sometimes I wish she was really just away with the fairies 100% and then there would be no choice. The choices we have are both deeply imperfect.

My dad spent his last two years in a nursing home and luckily for us he was quite content there. My brothers would take him for a pint on a Saturday afternoon and he would happily go back in. My mam and I used to take him to hers or mine for Sunday dinner and again he was happy enough to go back. We knew that we were lucky in that respect.

There was a woman there at the same time who would permanently have her jacket on and her bag on her lap and would tell anyone who listened that her son was coming to take her home at 7pm. It was sad to watch but at the same time she never got aggressive or angry about it - she would just repeat it over and over. I think it was just her thing. Maybe your mam is the same.

@Tracker1234 Keep on being bossy. Your friend needs a holiday. Employ carers or use respite whatever it takes. My mum at 92 hates me going on holiday, but I have a husband to consider and young grandchildren that need me to be well. She has carers 4 times a day fortunately. And I need a holiday it’s relentless.

Nothing helpful to say other than I'm sorry it's so hard. I sincerely hope that euthanasia will be legalised before I ever have to take my own life.

People were not meant to be kept alive at all costs.

Cstaff - it sounds like your Dad wasnt too bad. Most of the care home people cannot go out because of just how they are in public. My Father's trousers fell down when we tried to take him just down the road. Then his incontinence pad slipped down his leg. Then he wet himself.... In the end we couldnt take him anywhere. Covid then hit and I was allowed to visit behind a screen where he promptly announced he was thinking of getting married again....

I had to speak to the home because I was nervous that someone was trying to scam him. I said did he have anyone in mind for marriage and he pointed to a young Muslim girl who was one of the carers. She claimed to not know anything about it and I sort of believe her but there were a few instances I discovered after his death that hadnt been reported back to me. One was a carer who had been dismissed after my Father accused him of pushing him. Apparently my Father didnt want to bother me with the complaint and it was closed down. Clearly I can now not ask him what had gone on!!

This time round with other parent I have boundaries and I blooming well will go away on holiday with the family.

I always remember a previous thread from a lady who had been run ragged by a elderly Mother and had some some of breakdown. She also found that when her Mum was in hospital she refused any help from social services and said her daughter did everything for her. What she didnt do is tell her daughter what had been offered to her. When the daughter challenged her Mum 3 years later having found out accidently about the offer of support Mum said she preferred her daughter to do things for her rather than strangers.

I wish we could have a sensible discussion about very frail and elderly people just existing without being accused of wanting to do them in!

Instead there are massive issues with social care, people bed blocking etc. Of course there are some people who want to see their parents pass on for their own ends but that in my view is very very small %. The rest of us just want some peace and diginty for our loved ones.

I do suspect that prior to Shipman (who was a monster and who killed people with a perfectly decent quality of life) many doctors did 'play God', administering barbiturates, high doses of morphine and those 'Brompton cocktail' things. They didn't like to see elderly people with hopeless prognoses suffering. My own granddad went into hospital in the 1980s, was diagnosed with lung cancer, and we got a phone call within the week to say he had died. My dad just matter of factly said, 'maybe the doctor gave him something'. There has got to be a middle way where people can be peacefully and consensually put out of their misery, surely.

One of the problems is the care homes. If a resident has a fall or any illness the Care Home seem duty bound to rush them to hospital to be seen to be doing their best.
I wonder if people were left in their own homes if they'd be left to just fade away more. The latter stages of my relative's life in a care home were miserable and he hung on and hung despite no water or food for days and days. He had a ?morphine drip thing and staff acted as if he was totally unaware but who knows?
Imagine having no fluids for 10 days.
However no conversation had been had between next of kin and this person about end of life. They'd developed dementia so not sure if it would have been possible for them to decide anything. We are hopeless at discussing death.

Maybe the tides are turning. My mum had a heart attack 6 months ago, the hospital didn’t think she’d recover and they put a DNA in place. She did recover, the Dr phoned me and said they didn’t want to see her back in hospital, they’d given her all the drugs they could and there was nothing else they could do.
When she came home her Gp rang me to say if I agreed, she could have liquid morphine at home to take for any further chest pain, not go into hospital and basically die at home.
Mum wouldn’t agree to it and said she still wanted to go into hospital. She wouldn’t be able to administer morphine at home anyway she would be confused and frightened then it would be left to me to administer. I’d rather not.

🥺💕

My dad died a few years ago aged 92. He said that pneumonia used to be called the pensioner's friend. When antibiotics came in that cured it those pensioners continued to live when the quality of their life wasn't great. I remember the Macmillan nurse asking him about a DNR. He was a strong Catholic, but he definitely did not want to be resuscitated.

I know you might not be able to answer& might not know but do you get the feeling it’s more dementia/thinking about her old life taking or do you think she actually misses her home? How advanced is her dementia?

If she misses her home, i would (after a bit more time maybe to see how she goes) move her back home & get caters in 3 times per day.

Does she get involved in the activities there?

My poor old grandad lived in the same house for 70 years until he got a UTI & went into hospital where they found lung cancer & put him on end of life saying he couldn’t go home.

I moved him into a care (the best I could find) near me (30 miles away from his area) & it was awful watching him slowly die over 3 weeks. I really wish he hadn’t come out of hospital. 96& shipped about like that🥲

It would drive you mad - she did nothing but complain about how horrible it was living alone, but of course now she's living among people and they have activities every day - things she really likes, like crafting and music and gardening -she just says she wants to be home! Her dementia is more cognitive decline/memory loss, she's still continent, dresses and eats independently, she's not delusional or anything like that. I can't face the thought of moving her back home so she can maintain this illusion of independence, and ?I'm not sure how she'd take to a private carer (badly, I'd imagine) Tbh my own children were being neglected because of the sheer amount of running about after her I had to do, and I think you have to prioritise the young. It is wrong not to.

I don't think it's due to the unfamiliar surroundings, it's the dementia. My mum had lived in her house for 50 years but still used to phone me at night in a very upset state saying she wanted to go home.

I think moving her home would be a terrible decision. While it might be just about possible now with significant (expensive) carer input as she is still continent and able to do some self care, you just don't know how long that will last. You could be faced with moving her back to care within months.

My mother has had several episodes of very fast deterioration. You can't plan for how your mum is now. You have to plan for what will happen in future, and this horrible disease only goes in one direction.

You are absolutely right to prioritise your children.

Just to say... it's still only 15% of the over 85s who live in a nursing home.

I can also say that even trying to get people to agree to a DNACPR can be like pulling teeth. To be a candidate for resuscitation your heart has to have stopped! A very small number survive resuscitation even if they are quite young. It is insane to be for resuscitation if you are over 50 in my view (I'm 54).

Trying to get discussion of hospital avoidance or real living wills limiting treatment is even harder. I'd ask everyone who wishes their parents had sorted this out to make sure they do it for themselves ASAP.

Just to say... it's still only 15% of the over 85s who live in a nursing home. Is that specifically a nursing home or nursing homes and care homes? And what percentage end up in a nursing home/care home as opposed to what percentage are in them at the moment?

it's still only 15% of the over 85s who live in a nursing home

I wonder what percentage of people with dementia live in a care home.

Harold Shipman has a lot to answer for!

My parents both died at home from cancer in the 1990s. (A year apart, that was a fun 12mths!) when the pain became too much the district nurse brought a morphine syringe driver and they slipped away peacefully. In hindsight they both had very peaceful deaths in their own beds.

Our elderly (98yrs) matriarch died earlier this year in a care home. She took about 8 weeks to pass. The GP would prescribe end of life drugs, then she’d rally a bit, so drugs not used. After 5 days they had to be returned to the pharmacy. Then she’d decline again… but no drugs at hand to administer. It was a nightmare. Not sure if things would be different in a nursing home as opposed to a residential, but it was horrific to witness compared to my parents serene deaths.

Personally, I hope there is a Dignitas in the highstreet when my time comes!

I hope your mum settles, I used to find treating tricky visits like they were a work meeting helped to keep my mental health in good shape!

Yes - agree with all this!

In my elderly’s care home, minor medical incident leads to paramedics being called, just in case, quickest solution is to ship off to A and E, which leads to weeks hospital stay with little to no treatment in busy and noisy geriatric ward, (and then 2weeks isolation on return to the home during Covid…) And getting frailer with each hospital admission.
All this was despite family and patient saying “No hospital” but I suppose they are so scared of being sued, they just follow what ever guidelines are. Not in the best interest of a frail 98yr old though, in my opinion.

Definitely don’t move Mum back home with carers in. I am sorry but that suggestion is made by someone who really doesn’t know what it’s like to manage difficult elderly parents. They always find something to complain about regardless of what you do. If you do 99 things to their satisfaction the other 1 item will be picked at and the sad face will appear. I forgot to buy some prunes for Mum. Never mind the months and months I have spent getting her settled in her complex. When I did get the prunes - well you would have thought she had won the lottery!

I have found you need to be firm. Don’t discuss most things. Otherwise you will spend hours and hours going round and round in circles. Or they will try and get you to do things the way they used to do it. Go to the bank, wait in the queue, give the nice lady a cheque, get a printed bank statement at the same time (because you don’t use technology). That sort of thing….

And if they have some money for goodness sake don’t let them hoard it.

Spend it on getting help for YOURSELF. DH hid his money, pretended to have little bar the house. If something was free he would have it. When Labour offered free broadband in their manifesto he said he would take it despite having no mobile, no Sky, no computer. He just wanted it because it was free.

Take any offers of help from friends or relatives. Don’t let parent dictate who does what. Certainly don’t listen to siblings who think they have great ideas from afar which involve you running around like a headless chicken.

DF (not DH!)

The 'end of life' pathway baffles me - I can't see it as anything but a passive euthanasia anyway. My father too @Caradonna - he was on that drip for four days after a catastrophic stroke. So the patient basically dies of dehydration and organ failure, I'd imagine, while supposedly blissfully unaware. I struggle with it, and the memory. I can't see how that is any more humane or respectful of life than an injection of fast-acting drugs which could end a person's suffering within minutes.

Very Insightful!
I agree

I'd agree it feels very passive sometimes. I can't remember though if the final report on the Gosport unit has come out. Doctors there, one in particular IIRC, did exactly this - moved to 'making people comfortable' with morphine and probably cut off a lot of lives early. That's not ok but God I wish you could ask for it. And I also wish that people would talk about their preferences with death when you ask them.

I see many people near death who are finding it incredibly uncomfortable and distressing to swallow almost anything, but don't remember that, so still want to. That's a bloody hard one. Thank goodness for hospitals that do ice chips.