If you were given a choice ...

[ChocolateBrownie]

Would you prefer to live with one of your children who is very keen to care for you and who you always get on well with - or being placed into a care home?

The first option some distance from your spouse to get to easily, and at the moment your spouse doesn't wish to move, but she can no longer care for you in your former home.

I'm the hypothetical offspring, and wonder what PWD would have said if he'd been given the choice while he could communicate.

 

[Jessbow]

pre dementia- ''put me in a home, I dont want to be a burden to my children

Once immersed ''leave me wher eI am I am fine, whats the problem? I am not a burden to anyone''

 

[canary]

My mum was similar to @Jessbow

Before dementia (after a friend of hers went to live with her daughter) - Dont let me come and live with you, we would neither of us survive!!

After dementia - Please, please, promise me that you wont put me in a home.

Actually, mum did move into a care home and she was happy there.

 

[Duggies-girl]

pre dementia- ''put me in a home, I dont want to be a burden to my children

Once immersed ''leave me wher eI am I am fine, whats the problem? I am not a burden to anyone''

Yes, that's dad, she (me) looks after me very well.

 

[Lawson58]

Once I get to the stage of no longer being able to care for myself, put me in a home. Nobody really wants to be in a care/nursing home but I would never wish to put my children in the position of having to care for me. That for me would be worse than a care home option.

 

[Rohe 19]

My parents both have dimentia and I have cared for them for many years quite willingly and happily even though at times it’s been really hard it’s shown me things I never thought I would be able to do and given me a super strength I believe and I hope I only remember the special times we have shared. That said I things became too hard both ending up in hospital then a care home. I now have been so fortunate to have got a place in 24 hour assisted living for them. They have their own home 1 cooked meal a day 24hour help (invaluable) friends, entertainment. I wish they had come here years ago. So have a look in your area what is available in 24hour assisted living my parents are very happy in their own world here and still fulfilling as much an independent life as is possible for them which they encourage. Just wanted to point out it’s not necessarily always a care home option.

 

[elvismad]

I agree @Rohe 19
Mum went first into Assisted Living and it worked well for 6 months until an illness led to an acceleration of her condition. Mum loved the carers there and they to grew very fond of her.
It then took us 9 months to firstly obtain SS agreement that mum now needed the level of care that could only be provided in a care home and then to identify a suitable home and move her in.

 

[Jaded'n'faded]

Would you prefer to live with one of your children who is very keen to care for you and who you always get on well with - or being placed into a care home?

The first option some distance from your spouse to get to easily, and at the moment your spouse doesn't wish to move, but she can no longer care for you in your former home.

I'm the hypothetical offspring, and wonder what PWD would have said if he'd been given the choice while he could communicate.

Are you saying you think it's a better option for the PWD to come and live with you and you think he'd want that too?

How is that fair on his spouse if it means you are a distance away and she can't get there easily?

Many people have the attitude that 'anything is better than a care home', that care homes are dreadful and no one would want to be there. My own opinion is that often a CH is the very best place for a PWD because that's what they need - i.e. 24 hour care from professional carers, the company of others, suitable facilities/equipment for washing, lifting, nursing needs, etc.

So I would say that taking the PWD away from his spouse to come and live with you is not necessarily the best plan. Trying to justify it to the spouse by saying 'it's what he would have wanted' is neither relevant nor fair.

(Just my opinion...)

 

[NotTooLate]

This is impossible to answer...

It is horrible to say, but only you can now make that decision.

Some great comments here!

I have told my family to put me in a home, but will I later be saying... please don't put me in a home? I don't know!?

I struggle now to say what is going on in my head, one minute this and the next the opposite is what I think is right.

I do think it is important to talk and have that conversation while you can. We are all different. I have dementia, but while my final days will be similar in many ways, they will be as different too.

I'm sure many people love the idea of being in a care home and happy with that life, but for me and maybe others, like me and at this time, the thought of it is horrendous. But... I have told my family to put me in a home if I ever get to the stage where I am gone! If you know what I mean?

 

[Shedrech]

hi @ChocolateBrownie
in your dad's situation, I would say that I married my spouse and, as much as I love my children, she is the one I chose to live with and share decision making, so I would want my spouse's wishes to be honoured and if it's no longer possible for us to live together, I want her to be able to visit me as often and as easily as she wishes

 

[Sirena]

I agree with @Jaded'n'faded - a care home is often held up as a terrible choice that no one would make, but actually it can be the right thing. My mother is very content in her care home - much more than she would be with just me for company (not that I would have offered that option). She has constant company and help from kind professional staff who deal happily with behaviours (wandering in the middle of the night, incontinence) which could be very difficult for a family member.

I was always horrified at the idea of going into a care home but having visited my mother there for over a year, I am much more at peace with the idea of having to do so myself, should the need arise.

 

[Countryboy]

I you had the Choice
Ok because I have dementia and other medical problems obviously I want will keep going whilst I’m reasonably fit living at home but if my medical condition get that I need care in my hygiene etc or my memory gets that I can no longer recognize family No I don’t want to be a burden to family I Don’t want to be put into a Care Home (a) what would be the point in reality I would finished anyway (b) at what cost to the Tax payer sorry but to me its pointless plus I’m already looking at taking action myself as soon as the decline starts

read into that what you will but it’s my life and I'm ready

 

[marionq]

My children are the most precious beings in my life. I would never ever wish to do anything that restricts their lives which all of us have worked so hard for.

Put me in a home if needs be but hopefully by that time Dignitas will have a local
Branch I can sign up to.

 

[ChocolateBrownie]

Thank you everyone.

It is not my choice, and sadly PWD cannot answer the question now and it never cropped up when he could. He was always against care homes, and so that is the only "guidance" that I have on his wishes.
It is interesting to read the broad spectrum of perspectives - nothing is black and white.

To those of you saying that you don't want to be a burden on your kids, please consider that it may be something your kids would want to do for you - I really value the time we spend together, listening to music and living in the moment.

of course it needn't be such a burden if care funding and support was appropriate. Helping families to care must be more cost effective than lining the pockets of big care agencies.

 

[Shedrech]

hi @ChocolateBrownie
I take your point about a child wanting to care for a parent
I very much felt like that myself ... I too enjoyed time spent with my dad when I was caring for him in his own home and after he moved into his care home
I almost moved in with him to care for him, knowing all his life he would have done anything for me
however, I also remembered that mum, before she died, had reminded me to live my own life, and dad, whilst caring for mum, had said they didn't want to be a burden
and I made the decision taking all that into account
if mum had still been here, I would have respected her decision
as it was dad's behaviour was very challenging at times and I could not have met his needs in his own home, so moving in with him would only have worked for a few months at best

 

[canary]

There is also the point that even if I had been able to look after mum in my house (I wasnt because I was already looking after OH) I really dont think that I would have been able to give my mum the care and attention that mum received at her care home.

I know that we always like to think that being looked after by family has got to be the best thing, but as the dementia progresses, Im not sure that it always is. If the carer has to keep getting up in the night it causes chronic fatigue and you just cant function properly. In a care home there is always someone around if someone needs taking to the loo, reassuring or just having a chat. When mum came to stay with me she wanted me to be sat next to her talking to her all the time and I couldnt get on and do housework. If I left her to do the housework she would get upset. At her carehome there was always someone around, staff or carer, to talk to. With me there was very little social interaction, because there was no variation. In her care home there was always something happening - activities, workmen, staff coming and going, other residents around. I have also heard several people say that their PWD, when living in a house, tried very hard to fit into a normal household and they thought that this very thing caused symptoms. Certainly mum developed terrible anxiety and paranoia while she was in her own home that disappeared once she was settled in the care home. I know that she would not have allowed me to do personal care, but she had no problem with the carers doing it.

I gather from your previous threads that your dad is in a care home and you desperately want him not to be there. It might, however, be the very best place for him to be from his view point. It certainly was for mum. People change and although a care home isnt something I would want for myself now, and I know that mum fought against going tooth and nail (and I fully expect OH to do the same when the time comes), once you take dementia into account everything changes. The environment of a care home suited mum, she no longer had to struggle to "fit in" as she fitted in completely and it met all her needs - not just the physical ones. So she became content and her old personality resurfaced, when she had been really suspicious and nasty to everyone in her home.

Mum tried to make me promise that I would never put her in a care home, but I didnt - I promised that I would do my very best to do what would be the very best for her. I felt (and still feel) that I kept that promise.

 

[NotTooLate]

Of course you do your best and if you believe that you are doing everything you can do for the person you love.... then you have nothing to regret! You are doing the right thing!

I'm with CountryBoy on this one... I do not want to end up in a care home. As he said, what's the point!?
There is a difference here, we are looking out and you are looking in... it's different. While I am able I want to define my life. When the time comes, and I hope I know when that is, I would like to just go.

I suppose the big question for me is knowing when? In all I read, there seems to be this tipping point, this moment when there is a rapid downhill in all things. Do we know that moment, are we aware of it? It is obvious by reading the post, carers' are!

 

[Susan11]

I think you might be judging Care Homes harshly here. For many people they provide a safe and caring environment. People make new friends and join in activities. They may not be very active but this is probably due to their age and physical restrictions. My Mum has made new friends, joins in the singing and some craft work, making Easter hats etc . When she was at home with Dad before he died she had limited company and was quite lonely as Dad slept most of the time.

 

[NotTooLate]

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!?

 

[canary]

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

I think everybody feels that way - I dont think any one would choose to move into a care home .

I suppose the big question for me is knowing when? In all I read, there seems to be this tipping point, this moment when there is a rapid downhill in all things. Do we know that moment, are we aware of it? It is obvious by reading the post, carers' are!

You are right - there comes a tipping point, but I dont know how many people with dementia are aware of it. Certainly my mum was not. She was unable to comprehend how much she had changed and by the time she moved into her care home she was unable to make that choice. I had to make that choice for her and was pleased when she told me how much she liked living there