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

As DH’s Parkinson’s progresses and he needs more and more support I worry about how I will cope. Neither of our children lives locally so there is only me to do everything and I do view the future with some dread. It’s easy to say you would never send a loved one into a care home, but there may genuinely be no alternative. It is physically and emotionally exhausting to be a sole carer; certainly the present situation with no social interaction is very hard. I just hope it is a decision I don’t have to make.

My mother used to always say when I was young that she would rather be dead than go into a home when she was old. It seemed perfectly reasonable. But guess what? She got to 79, developed severe dementia, and my poor old dad who was also in his 80s and in poor health just couldn't cope with her at home. She had carers call in twice a day to wash her, but that was about it. All day long she struggled to try to "escape" from the house, which she was sure was full of strangers plotting to harm her. She threw drinks and food across the room, was constantly distressed and doubly incontinent. In the night she got out of bed and wandered all over the house, used the corner of the bedroom carpet as a toilet.did all sorts of dangerous things, so my dad could never get any sleep. My husband and I had a very small house, no spare room, and worked, couldn't possibly have coped with her if we tried to look after her. In fact, we nearly went out of our minds running back and forth trying to help out with her multiple times a day. In the end there was no choice but a care home. She barely knew the difference when she was moved there, and we told her she was on holiday. Within a very short time she stopped recognising any of her close family and needed feeding by spoon. She did not even know we were there when we visited, just stared ahead and mumbled to herself. It was a terrible time, and truly a relief when a sudden stroke took her. My poor dear old mum. It was a situation she never would have wanted, but there was no choice, for any of us. And for the time she was there, she was well cared for. Now my husband and I are getting older, we have told each other and our daughter that if the time comes and one of us is in a bad way and it's impacting on the quality of our loved ones' lives, don't struggle too much or hesitate to get us into a (decent) care home.

Whitewavemark2 - I think your post is a sweeping generalisation. I hear what you are saying about the petri dish, but not about the eugenics. Any place where a lot of people congregate has the potential to spread bugs, and always has: schools, cruise ships, hotels etc. Because care and nursing homes are peopled by the elderly then their capacity to result in deaths is greater.

I do think you need to be careful how you express yourself. There are very many people on this site who have loved ones in care homes; or indeed may be residents themselves.

My OH had end-stage PD, but I cared for him at home for many years, then, when he fell and fractured his hip, his condition took a nose dive. Even then I was able to keep him at home for about 8 months with a combination of carers, and even latterly live-in care. But they became unable to look after him because of his combination of physical helplessness and paranoia.

I carefully researched the best place for him to receive care and found a wonderful newly-built nursing home which had everything. He spent his last months surrounded by loving and sensitive care - I could not fault them in any way. All the family were there for several hours each day sharing in his care. When he became ill with pneumonia we made the choice for him to stay there in his lovely private room looking out onto the garden rather than go into hospital. I will be eternally grateful for the care, respect and kindness that was shown to him there. One of the carers, who looked about 12, would kneel by his bed to provide gentle respectful mouth care when he was on end-of-life care.

There are some rubbish homes; but there are good caring ones too, and it is insulting to those loving carers to imply that all are bad.

We should look after how elderly parents at home.They brought us into the world.We should give them love attention they need.Instead we are to concerned with materlisric goods to care.I gave up work for my mom and would do the same again none of my parent or in law went into a home.We looked after them me and my husband it called love

By the way, my DDs all know that if I became so incapacitated that I cannot look after myself at home, then that is the home where I want to be looked after. I did not raise my children to find themselves as full-time unpaid carers for me. They are loving caring people and would make sure I had the best; but I want them out there enjoying their lives.

Houndi all credit to you for what you did, but please do not accuse anybody here is being materialistic or lacking in love.

dizzy you are not reading my posts.

maw you are trying to pick a fight but you will get none from me.

My opinion stands. You are interpreting in your own way.

I started this thread by reacting to the news on Radio 4 that at least 50% of deaths from covid are happening in care homes.
I was appalled.

I explained how going into a care home was not the only option and gave an example as to how we cared for and funded mum.

Since then. So many of you have either not read what I’ve written or put your own spin on what I have written.

I am largely writing about the situation we are finding ourselves in, it is dystopian and horribly. It doesn’t matter how well the care home is managed, the situation regarding the virus won’t change.

Houndi - to imply materialism and a lack of love is insensitive and inaccurate.

I was a social worker in a former life and have seen so many elderly people blossom in a care or nursing home; and improved relationships with their loved ones once the stress of caring is lifted.

I can assure that my OH had all the love and attention he could need from all of us - we were able to spend peaceful loving times with him, once the task of wiping his arse, dealing with his catheter etc.was taken off our shoulders.

Life is more subtle than your post implies.

Houndi I take exception to your post, my SIL loves her mother to bits, but being bitten, scratched and having things thrown at her, being told that she is trying to poison her, using each chair in the house as a toilet, (not forgetting that SIL is ill herself and elderly,) falling down the stairs, sleeping in the garden and generally screaming at her for most of the day.
If you can honestly say that you could care for someone like that for 3 or more years, with little or no sleep, unable to leave MIL on her own in any room unless she is asleep, then you must be superwoman.
Don’t forget also that if we were materialistic we would have the prospect of a house to inherit instead of having to sell it for care home fees.

Please can you expand on what part of your posts I am not reading WWM2.

I watched the prog. on Sky at week end about a care home in Birmingham(?) They had had about 11(?) people die of virus, care staff had virtually no protection. The virus must get into the homes by staff coming in and out - even if the ''patients' are all elderly, they are self isolating by virtue of where they are - so how else is it that so many people have it in the care homes?

Whitewave I am certainly not trying to pick a fight and might I respectfully suggest that for many here your Eugenics and Brave New World judgement was personal (your entitlement), but inflammatory, biased, ill - considered and sadly lacking in tact or empathy.
Dizzyblonde and others also have the professional experience to know what they are talking about - and display both humanity and common sense.

I think that this thread shows exactly why so many threads end up in such a bun fight.

I expressed an opinion, then so many if you have personalised it, looked at your own situation and decided that I was somehow criticising your choice,

Absolute rubbish.

I reiterate. There is a choice. I can only speak from personal experience. I didn’t say that everyone should not go into a care home, I didn’t say that those who do must mean the relatives are less caring. I didn’t say that I expect my children to step up if I get to that position. I didn’t say that we funded mum. I didn’t say that all care homes are rubbish. All that was spin put in by other posters.

I did say that I think the current situation is disastrous. I did say that the way the virus is behaving it is treating care homes like big Petri dishes, I did say that my preference would be not to go into a care home, I did say and explain how we cared for mum at her home.

Everything else is spin.

And as for Eugenics and dystopia.

I would refer you to Cummings and his side kick. They introduce the topic not me.

Well my MIL moved into a care home six weeks before lockdown - we had to go to Portugal - she loved it. They had coffee mornings in the lounge - people used to come in and sing - they had speakers - hair dresser on site - you name it - she was so busy joining in all their activities she didn’t have time to read . The chef made fresh cakes each afternoon for them all. She made friends with 3 other ladies mainly - and they would sit and have a right old natter - she really was happy but unfortunately times have changed now and it is so different. She has to stay in her room - we can’t see her now - she hates it now - she was never good being on her own when she was home with us - she hated us going out. Hopefully all with return back when we are out of this nightmare - but I must say the carers are fantastic - they are so kind to her and can’t do enough for her - unfortunately she has had a high temperature for the last week so not sure if she has Covid - nobody is saying anything - which is frustrating - I sincerely hope not . What I am trying to say is she did love it there until she was shut in her room - I try to tell her they are all shut in their rooms for safety but at 93 it is so difficult.

I have set up a Living Will which I hope will be respected, and also a savings fund which would take me to Switzerland if necessity arose. At the end of their lives, beloved pets are treated with more kindness and compassion than are people.

I always feel really sorry for people in care homes. To me, it’s like they’ve been abandoned.
I know some may not have family, or may have dementia so bad that being cared for at home is nigh on impossible. But certainly a lot of the people I see in these homes ( from the TV as I’ve never actually been inside one ) are just old.
As I say, I find it very sad.

May be not politically correct, but from the heart.
We are both horrified by the idea of care homes in the present circumstances. These people are paying thousands of pounds per month. even per week in some cases to be imprisoned in a giant Petri dish. It sounds like Russian roulette. We are aware that many people have no choice and feel incredibly sad for them. But we, speaking very truthfully, are terrified of the very idea of having to go into a home.

No not questioning your personal choice Whitewave jIt is easy to make that decsion now when you are in your right mind and able to manage your life. Just wondering how you can make that decision, given that by the time you may need residential care you will have severe dementia or debilating physical problems.

I am sure you are not one of those people who do not care how much your family suffer or collapse with health problems because of your insistence that they care for you at home.

You may not want to go into care, and that applies to all of us, but there may well come a time when others have to decide between your care and their health and well-being or you may have to accept that staying at home in unfeasible.

I think we all hope and pray that time never comes, but my rule has always been to never say never, because you usually end up with having to be or do what you have loudly announced you would never do.

But does any one have a reason why there are so many cases of virus in care homes? (Please don't say ''old age''). That is what we want to know - not all the personal histories of someone's great aunt! How are they getting infected?

I find some of the posts on this thread extremely upsetting and in some cases quite offensive.
My parents were both in an excellent care home. My Mother had to go in just over 2 and a half years when my Father who had been caring for her had a stroke. She had PD quite advanced. My Father joined her on a temporary basis for Christmas. At New Year he was found to have Lung Cancer caused by Asbestosis and died just 3 months later. My Mother stayed in the home and died at Christmas It was impossible for me to look after either of them due to my health conditions and my daughter is already a carer for her autistic son and her other grandmother who has just died due to CV19. We chose the care home with great care, and it proved to be excellent.
How dare anyone say it is down to money, lack of care or just not wanting to be bothered on the part of the family. Many people on here have recently lost loved ones in care homes, many of us thought long and hard before going down the care home route, many of us couldnt do what we would have liked and looked after them ourselves.

So who is going to look after you and don't say family? Ive made it clear to mine they are not doing it. They have their own lives to lead.

monica read the op then think about it.

I have had some revealing and horrible experiences of so called care homes. Both my wife's parents who had been living with us for 15+ years needed to go into hospital. She was having trouble with a hip and he had a stroke. Neither of them were able to come back home.

Social services took over, and how I dreaded dealing with them, not as persons but because of the rules they had to follow. So I took on the job of visiting every care home in S East Wales. Naturally I started with Cardiff but had to go further afield when nothing in the city was satisfactory. So I saw those that smelled as soon as the door opened ( how could the staff stand it?) those that gave a false impression but as soon as you started looking around found problems and those where the standards of care (despite having their quota of NHS trained nueses) fell well short of what they were promising. So bad was the first one that social services insisted Dad went in (while I was still looking for a place for him but he was bed blocking) that I visited him every day at different times and when it was dry I wheeled him out and around the local park until it was time for his next meal and stayed with him as long as was able to do. His watch and a hearing aid "vanished"; the manager said she could do nothing. But eventually I found the home that met his needs and satisfied my wife and me in Penarth. His wife had also been moved there but only after a long battle over the fees and the same for him. They both died there within 3 months of each other.

My experiences made my wife and I decide that we could never face any home. Even when I found one home I knew that either it would have to close at some point (ownership problems) or changes in staff and managers would mean a change in most other matters.

We cannot afford private care. So as soon as we heard of Dignity in Dying we joined; a first step as they are still fighting for the rights of terminally ill people to decide upon when they wish to die. It seems that they are slowly winning that battle having got many MPs and now doctors representative organisations as well as individual doctors to see that the law needs to change.

Our wish is that when that battle is won we can then move on to let everyone who wants to decide when to die (and not by some awful suicide attempt). All the opposition to this is driven by those who cannot see where this can be made a safe decision by those places across the world where this is made available by law.

Then we can arange our matters accordingly and avoid any chance of facing a care home and the horrors of waiting to die in fear of what we have to face while doing so. I am well aware that there are many who cannot and will not accept such a change. However the whole point is that it has to be a choice, a personal legal choice, and the safeguards can be made as shown elsewhere.

bingo12 Care staff are often on low wages cannot afford a car so have to use public transport. They cannot always "social distance" hence they can catch the virus easily themselves and before they know they are infectious pass it on.