If you were given a choice ...

[Jaded'n'faded]

No... not judging care home... I'm sure there are people who enjoy living there... Look how many retirement villages and the like there are... most of them want to be I assume!? I am also sure that the majority of staff that work in care homes want to do that type of work and do their best!

However, while I have and still can make a choice, I do not want to go into a care home.

I'd feel sorry for the people who would have to put up with me!

I think I am probably hard to live with at anytime, so image what it would be likely if I was completely bonkers!?

You make a valid point. My mother moved to a 'park home' on an estate with an age restriction about 15 years ago. She didn't socialise because she never has, but definitely felt part of the community. She felt safe there and amongst like-minded people.

Maybe we should see care homes more as community living for older people. With any other illness, we wouldn't hesitate to get the professional help a person needs. But for some reason, with dementia, we always assume that we - family - are the best people to help. Yet we are not professionals or even trained in any way. We believe our 'love' is such a precious thing that it will be better for the PWD than professional care.

There are threads all over this board that tell of PWDs becoming agitated or upset by their own family members - is that good for them? On moving to a care home, the advice is often that family shouldn't visit for a little while so the PWD can settle in.

I'm not sure where I'm going with this! Perhaps we just need to get away from the image some of us have, of care homes being dreadful places and that going to one somehow means failure/punishment/banishment, etc. As others have said, it can be a very positive thing and more importantly, it is often the right thing.

 

[Sirena]

@Richard and Fin Re the tipping point, I can see exactly why you say that, and I would feel the same myself, should the issue arise for me. But I am not sure if we would recognise the tipping point. But maybe if we don't, then that's okay?

I think these two articles about Katherine Whitehorn were posted on her last year. She has Alzheimers and is in a care home. The first is by a colleague who believes Kath would never have wanted to live like this, the second by her son giving a different point of view.

https://www.theguardian.com/commentisfree/2018/may/29/assissted-dying-katharine-whitehorn-alzheimers

https://www.theguardian.com/commentisfree/2018/jul/01/katharine-whitehorn-dementia-alzheimers

 

[NotTooLate]

@Sirena Thanks for the links, I will read with interest... I bet I'll think the colleague was right and then read the son's comments and think he was right!

I know I'm changing and it scares the hell out of me... The person I was, is not the me now! I'm becoming a stranger to myself, so I don't know how anyone else that thinks they know me copes! If that makes sense?

I suppose my biggest fear is this, locked in type syndrome, where I'm trapped in a body, looking out at the world that I can no longer rationalise.

 

[Jaded'n'faded]

@Richard and Fin Re the tipping point, I can see exactly why you say that, and I would feel the same myself, should the issue arise for me. But I am not sure if we would recognise the tipping point. But maybe if we don't, then that's okay?

I think these two articles about Katherine Whitehorn were posted on her last year. She has Alzheimers and is in a care home. The first is by a colleague who believes Kath would never have wanted to live like this, the second by her son giving a different point of view.

https://www.theguardian.com/commentisfree/2018/may/29/assissted-dying-katharine-whitehorn-alzheimers

https://www.theguardian.com/commentisfree/2018/jul/01/katharine-whitehorn-dementia-alzheimers

Fascinating articles @Sirena

I could have written the same, word for word. Mum has a Living Will and always made her wishes known. On the other hand, I'm now in exactly the situation Katharine's son is in. Mum is a different person now and I'm sure has no recollection of the Living Will. She is physically well (on no meds at all apart from the occasional laxative) but I dread a medical emergency arising where she requires some sort of treatment. At that point, I'm the one with the 'power' to say yay or nay, but faced with mother wanting treatment I'd feel like a murderer to deny her. (It's unlikely to happen, fortunately, as she doesn't like hospitals/doctors, etc.) I can hardly turn round to her and say, 'But mum, 20 years ago you said you didn't want any treatment so I'm just going to stand here and watch you die!'

It is very hard.

 

[Sirena]

@Richard and Fin it's interesting to hear how you feel about it - 'that you are becoming a stranger to yourself'. In early stages my mother described it as having a pane of glass between herself and the world.

@Jaded'n'faded my mother refused a DNaR about 5 years ago when she was early stages of Alzheimers, but I accepted one for her last year when she was no longer able to make the decision. She too is otherwise healthy, no other medical conditions. She is currently very content in her brilliant care home, but if she outlives her funds and has to move, she may be considerably less so. She is 84 and her parents lived well into their 90s.

 

[ChocolateBrownie]

No... not judging care home... I'm sure there are people who enjoy living there... Look how many retirement villages and the like there are... most of them want to be I assume!? I am also sure that the majority of staff that work in care homes want to do that type of work and do their best!

However, while I have and still can make a choice, I do not want to go into a care home.

I'd feel sorry for the people who would have to put up with me!

I think I am probably hard to live with at anytime, so image what it would be likely if I was completely bonkers!?

Both of my husband’s parents passed away in recent years. FIL was adamant about staying in his home, and did so until the end. While there were many health reasons why it was not the best place, mental health was not a problem so he was able to verbalise his wishes and we supported it.

MIL saw a care home/retirement village being built and put her name down for a flat and then told us all - it was her choice, and she was very happy there and we thought the care there was exemplary.

So please don’t think that I am judging all care homes, or people who have to put their parents in a care home. And, From my visits to my father, I see residents that I know I would never be able to cope with (but also other residents I wish I could bring home!). It is like visiting an orphanage, with some people constantly asking when they are going home.

I am very fortunate that Dad is not ‘completely - or even a little bonkers’. He is compliant, gentle, immobile, knows me and sleeps a lot. He knows he is not at home, and asks about home. We say he is in convalescence - which he accepts.

But, He can see no garden, hear no birds, is forced to watch MamaMia every day, can’t choose what he eats, cannot reach a drink, cannot play his own music. All these small pleasures are taken away as whatever I say to the care home, no one has time to stop and spend time, and staff turnover is phenomenally high.

Unfortunately, the care for Dad is nowhere near that which was experienced by my MIL.

My father has not been given a choice - as there was disagreement in the family, it was decided by a social worker who rapidly disappeared.

The point of my post in this forum specifically for people living with dementia was just to get some hypothetical feedback from people in the same position as Dad.

The spectrum of views is as broad as the spectrum of the disease.

For those who fear becoming bonkers or difficult, that doesn’t seem to be inevitable. Most of the people that I have got to know on the dementia floor at the care home are gentle and lost.

 

[NotTooLate]

Good Morning ChocolateBrownie...

This is lovely piece... I don't know what to say.... speechless me!?

The place sounds nice... I mean really nice, but what you say here... 'no one has time to stop and spend time, and staff turnover is phenomenally high' I think this is just a product of our society. Looking after us is not a job, it is vocation. I was a Primary Teacher and this was the same thing.... I used to see teachers that should never have been in teaching... they saw it as a job and that is what happens in Care Homes... I don't think it is just care homes and it's not because of any outside force, it's because we are humans... and often money comes first plays a big part. Talking of vocation, I think this were there is a dilemma for family members.... you can not see their loved ones as a job! Maybe if Care Home started looking at recruiting carers, who know what it really is like... this may help!? Looking inside out, not outside in!

Your Dad seems like a lovely man...... just like how I would like to be!

Gentle and lost.... Says it all!