When the time comes I’m not going into a Care Home

I’ve heard of so many people - even those who think they understand dementia - saying that if they ever get it, they’ll finish themselves off with a stash of pills, or whatever.

My mother used to say the same, and I’m sure she meant it. But even in the early stages of the disease (she had it from her early 80s until she died at 97) she was quite unable to understand or remember that there was anything wrong with her, and would fiercely deny it if anyone reminded her. So we soon stopped. She simply could never remember that she couldn’t remember anything, if that makes sense.

Even when she could no longer even make herself a cup of tea she genuinely thought there was nothing wrong with her.

This is why I’ve made my wishes crystal clear in my Health and Welfare P of A - dh has done the same.

It’s all very well knowing what you’d want when you’ve still got all your marbles - but what about when you haven’t?

I don't have family who can and will care for me if the day comes when I cannot look after myself.

I frankly don't think we should expect our children and nieces and nephews to look after us.

DH and I have long since agreed that if one of us develops some form of dementia a care home may well be necessary, if the other spouse isn't to wear him- or herself out.

Various other illnesses could cause problems best solved by professional care.

It isn't what we hope or wish for, but it might be necessary.

I am full of respect for those who choose to look after elderly or old relations at home, but it isn't my choice.

Dear Dorsetcupcake61 Your letter moved me to tears. In fact my eyes are still stinging. God bless you and your daughter and all those kind and caring Care workers who so unselfishly look after our relatives when it is impossible for them to stay at home. We can never thank you enough.

If only the Government could read your letter!

Carollouise,
Thank you for putting into words what I would like to have said.
One person alone cannot cope with a physically strong with advanced alzheimers for many reasons.
Yes the guilt never goes away and care homes do need to be better regulated and run.
I can't visit under lock down and now two residents have confirmed virus as the staff have informed me.
It is upsetting to read comments on here at times.

tilly?

blooming spelling thing compos mentis

I will reply, but this thread has totally gone away from what my op intended which was a comment on the current viral situation.

lucky and bluebell yes I may change my mind.
Yes the children intend to put me in a home? with or without quality care.
Yes I agree I have absolutely no intention of impinging on my children’s life.
We did what we did for mum because we chose to. We were lucky.
The end?

Thought I had posted this ! But here goes again !!
MIL is in a beautiful home - she loves it - said she would never go in one before - but we had to go away on business so she seemed to like this one - but now we can’t get her out! She has made friends with lots of people there now - they have coffee mornings - activities in the afternoon - a pub night - albeit in the home - hairdresser on site - the food is good - they always have some cake/biscuits or something chef has made in the afternoon for them - and all the staff are lovely very caring. However it’s a different story now as they have shut her room - as she is in isolation as have had a high temperature now for nearly a week - so going from I love it to now I hate it!! She hates being shut in that’s the worst thing for her - have tried to tell her why - which she does understand but still hates it. The carers are still caring but now all worn out. I do hope she gets through this nightmare, but before this she was always chatting about everybody - now of course they haven’t the time to talk much as they are all stressed out! How times can change so quickly.

Dementia aside, if I remain composed mantis I shall refuse to go into a Residential home. I visited so many when I was able bodied. I knew it would never suit me. I would be the most miserable git in the room. I would hate sitting around with everyone else and having people calling me "Darlin" and eating communally like school dinners. I like my own company. I'll stay at home even if I do live in a bit of a muddle, I need my own space. I'd kill myself if they put me in one of those places.

Thanks for the reply whitewavemark

I too will exit without dignity if push comes to shove and I there’s no other choice.

Neither am I the sing song type.

Maybe we have more in common than many get first appear.???

Be careful what you wish for Whitewave my aunt (not a real aunt) a kind gentle lady refused all ideas of a care home or even a day centre but in her 90 s she became bed bound and with no living relatives no children no siblings no nieces or nephews she ended spending about 4 years lying in her bed alone with carers visiting for fifteen minutes three times a day
She could not read or do any hobbies she had a radio by her bed which was not even near a window to look out of
She was offered a care home many times but always refused ....how happy could she have been with new friends and even strangers around to talk to, regular meals and perhaps games or crafts to try It must have been a living death
The thought of a care home fills me with dread too but this last month has taught me how lonely it can be tucked up in your own home however nice your home is so it would be the lesser of two evils if it ever comes to that for me
I DO NOT want to ever impinge on my kids life

communal sing alongs, craft sessions and kindly folk - well it fills you with horror now, and my OH would have said the same when he was younger, but when it came to it, he loved the singing - I took my singing group in, that he used to belong to - and they had lovely things going on at the home which he really enjoyed: owls were brought in and there is a lovely photo of him stroking an owl - he was enchanted by them. Ditto the cats. And he was a demon at the quizzes in the bar. In many ways it opened up his life more than when he was at home, because everything was on tap - we could not get him out to anything when he was living at home, as it was impossible to transfer him to a wheelchair without at least two people or a hoist, and toileting was a problem.

Whitewavemark2 - I think when the time comes it would be kindest to do whatever relieves your children of the terrible worry of an ailing relative whose care is problematical. I would far rather my children could relax in the knowledge that I am being well cared-for and they could then spend quality time with me.

If anyone found my comment offensive Im sorry. After caring for a relative, the lack of support we received etc. This is a rather sensitive subject for me. I did not grudge the caring, what I did grudge was no support from anyone and that includes family. I am determined my children will not be put through what I went through. I don't want to go into details, but it was an extremely difficult time. Support was zero. The Care Home our relative did eventually end up in was very good. You could visit any time and I felt the staff were lovely. They are not all terrible places.

nannieannie you’ve got it in one!!???

What about the training in these care homes ?
It's not just a matter of safety and assistance it's also about being fully trained in the management of those who are ill and to recognise certain aspects of their health.
Is the one in charge trained up to standard, i.e. qualified in a nursing career ?

In between doing night-work at my local hospital many years ago I used to help a friend who had a nursing home and one day an elderly lady started to choke on her dinner.

A " supposed " trained nurse just stood and didn't know what to do so I dashed from the kitchen where I'd been putting out medications, and rushed to the dining room while I put the poor panicked lady flat on the floor, took out her teeth and the food which was stuck in her mouth, told the gormless object standing there to ring 999 and I got on with resuscitating the poor soul who had turned blue. In the process I broke 2 of her ribs but thankfully she began to breathe and by the time the ambulance came she was talking. The lady did live on for quite a while and was old at the time too.

I wouldn't resuscitate an ill patient though as I've seen that carried out on a ward and the poor soul seemed to be flung about like a rag doll---no thanks. Especially knowing that it would be in vain.
Would I wish it ? NO ! Certainly not in place of a younger person who'd survive.

Choking is a very common occurrence particularly with those who've suffered strokes so great care has to be taken when they're able to feed themselves. I despair when I think of those without proper training as in the above case death is avoidable with proper care.

dorsetcupcake thank you for your post. I absolutely agree with everything you say.

Chardy - so that would be about 5,500+ at the moment?

eglantine

No I wouldn’t inflict myself on my children. I am too difficult to manage I think. Although my daughter wouldn’t stand for any nonsense, and my son would run himself into the ground.

Tbh I would like the choice of staying in my own home with appropriate care if possible, but I am a strong believer in choice and would exit with or without dignity.
I know that the vast majority of people have no problem with care home, but the thought of communal sing alongs, craft sessions and kindly folk fills me with absolute horror.

Bugger that as my mother would say.

Nannieannie51 - Could not agree with you more! Totally to the point!

Today's ONS statistics, based on the 1st week in April, said that CV home deaths and CV care home deaths were about 50% of the number dying in hospital from CV.

Isn’t it funny how people interpret things differently. I didn’t take Whitewave to be criticising any of you for putting relatives in care homes. Nor did I think she was critising the staff at care homes who are doing amazing jobs.
I took her to mean that it is disgusting how the care homes have just been ignored and left to cope. A lot of them without PPE. The residents and staff aren’t even being tested when they display symptoms. The figures of people dying in care homes and at home aren’t even included in the daily figures.
I remember saying to someone at the start of this when the government was so slow to react that they’re using the virus to mitigate the expense of the Baby Boomer time bomb and I haven’t changed my mind yet.

Just wondering what your plans are for when the time comes whitewavemark?

Is it for your family to care for you?

Or, like me and cardiffjaguar are you hoping it will be possible to make the choice of exiting with dignity?

We have clashed on other topics, but Im genuinely interested in how you’re going to manage “the time”.

maw I was merely reiterating the ideology postulated by Cummings and sidekick.

My thoughts that it is a Brave New World and a dystopian future are referring to Huxley and his reaction to Eugenics

Thanks very much HAZBEEN - I do think people should be asking this question ''why are so many dying in care homes?'' now to government. That is what should be point of this thread! I think it is outrageous what is happening NOW in care homes. I suppose staff should have been kept confined to staying at care homes 24/7 and had their own sleeping quarters onsite. Although that isn't what is happening in hospitals. But people who are ''offended'' by some of the comments should get over them and worry about the present situation. Has the government given an adequate response to this crisis? I would say ''no''.

Hi Whitewave2,
Care homes were a complex situation before Covid. Both myself and my daughter work in care homes. Shes on front line,I'm isolating due to a health condition.
Yes,care homes vary incredibly and paying a lot doesnt mean good care.
I've worked for social services for 30 years,left to care for my dad who had dementia,then worked part time in two care homes. The first was with older people who had capacity,the majority of whom had chosen to be there for various reasons,most would probably rather not have been there but recognised they needed help. Where I work now the majority of residents have dementia although we also are a nursing home. Obviously with dementia a resident will ask to go home and its heartbreaking but we try our hardest to bring some happiness to each day and ensure their wellbeing,they are our extended family.
With regards to illness in both care homes I have worked for hygiene is paramount and in the two years I have been there any hint of an infectious bug is immediately wiped out by barrier nursing/care.
I was lucky enough to be in a position where my father who had vascular dementia could move in with me. He always had a loving disposition,and that never changed. Others are not so lucky and dementia can bring about tremendous personality changes including aggressive behaviour that is impossible for one person to cope with 24/7. Care in the persons own home from community carers is drastically overstretched and there comes a point where it is neither safe nor appropriate.
I would never judge anyone whose relative was placed in a care home,every situation is different. I'm humbled by the love and devotion shown by many relatives.
I'm also heartened by the love and devotion of so many young carers who give their all in a poorly paid and respected job.
With regard to the current situation most care homes,including mine,locked down in early march. No agency workers,carer visits or unnecessary visitors. Hygiene,handwashing,cleaning paramount. Many staff volunteered to move in to reduce risk of infection.
Can you imagine managers despair in care homes when they are TOLD they HAVE to accept older patients from hospitals who covid positive for end of life care to free up NHS beds.? Despite the best efforts of care homes they feel like King Kanute holding back the tide.
The staff in care homes are expected to care for covid patients with very basic PPE,masks and plastic aprons. No visors,eye masks. Owners are trying to purchase it but impossible.
My daughter will be working today with minimum ppe,no sick pay if she becomes ill,and a very real danger she may contract a life threatening disease. All for just over £8 hr. She could walk away,but is devoted to her residents. Shes very very scared.
Fortunately there is growing concern in news about the plight of care homes and their staff and residents. Unfortunately it's not as glamorous as NHS. I can only hope when all this is over things will change.