Residential Care for Young Onset Akzheimers!

triumph25

Registered User
Apr 2, 2012
89
0
Forest of Dean
Unfortunately we are now coming to the stage where I will no longer be able to care for my OH at home. So I have been looking round at homes locally. Firstly, because we are not well off, we need to find homes that will accept council funded clients. So that reduces our options and choices.

Secondly we have to choose homes that can deal with dementia patients, which reduces our choices and options even more.

Then they gave to be able to accept someone under the age of 65!

So today I went around and viewed the homes.

It's really very very depressing! They mostly cater for elderly, frail non mobile clients.

One home I went into had them all sitting watching Jetemy Kyle, saying they like Jeremy Kyle! Well so they may but if my OH wasn't already whacky (no offence intended!) he certainly would be by the time he'd been sitting watching that!

Others listed their 'activities' as bingo and 'singalongs'

The real problem is my OH is mobile, likes walks and nature not sitting watching TV or playing Bingo.

So, what's the alternative?

Yes I will still go and visit him, but I will have to get a full time job to enable me to stay in the house, so I will take him out at weekends, but it seems really cruel to incarcerate him somewhere where I know he will be unhappy!

As if making these decisions, for all of us, isn't hard enough, the lack of suitable facilities for younger people with dementia is appalling! And it makes the decision even more traumatic!

I know they are in a minority, and we live in a rural area, but I really have no idea what I'm going to do.

I've looked into a shared lives placement, but it doesn't seem as though they will be able to cope with him full time. So far, they have said they can take him for respite 3 days at a time!

I have looked on line, but the nearest places that would cater more readily for his needs are a good 2 hours drive away, and because they are small specialist facilities they cost a bomb and have huge waiting lists, and he would be totally isolated that far from home.

I am sure I have looked into everything I can and our social worker has been very helpful, but I just don't know what else I can do! :confused:
 

jjude

Registered User
Jan 4, 2011
34
0
England
Unfortunately we are now coming to the stage where I will no longer be able to care for my OH at home. So I have been looking round at homes locally. Firstly, because we are not well off, we need to find homes that will accept council funded clients. So that reduces our options and choices.

Secondly we have to choose homes that can deal with dementia patients, which reduces our choices and options even more.

Then they gave to be able to accept someone under the age of 65!

So today I went around and viewed the homes.

It's really very very depressing! They mostly cater for elderly, frail non mobile clients.

One home I went into had them all sitting watching Jetemy Kyle, saying they like Jeremy Kyle! Well so they may but if my OH wasn't already whacky (no offence intended!) he certainly would be by the time he'd been sitting watching that!

Others listed their 'activities' as bingo and 'singalongs'

The real problem is my OH is mobile, likes walks and nature not sitting watching TV or playing Bingo.

So, what's the alternative?

Yes I will still go and visit him, but I will have to get a full time job to enable me to stay in the house, so I will take him out at weekends, but it seems really cruel to incarcerate him somewhere where I know he will be unhappy!

As if making these decisions, for all of us, isn't hard enough, the lack of suitable facilities for younger people with dementia is appalling! And it makes the decision even more traumatic!

I know they are in a minority, and we live in a rural area, but I really have no idea what I'm going to do.

I've looked into a shared lives placement, but it doesn't seem as though they will be able to cope with him full time. So far, they have said they can take him for respite 3 days at a time!

I have looked on line, but the nearest places that would cater more readily for his needs are a good 2 hours drive away, and because they are small specialist facilities they cost a bomb and have huge waiting lists, and he would be totally isolated that far from home.

I am sure I have looked into everything I can and our social worker has been very helpful, but I just don't know what else I can do! :confused:


I am sorry I have no advice to offer you I just wanted you to know my heart goes out to you and I hope someone on the forum can come up with some suggestions to help you in a bad situation
 

Scarlett123

Registered User
Apr 30, 2013
3,802
0
Essex
I can only echo jjude's post. I can't offer any help, but couldn't just read and run. You're between a rock and a hard place, and I hope someone comes along soon with some suggestions. xxx
 

Otiruz

Registered User
Nov 28, 2015
253
0
Kent
Hello Triumph25,

Your OH's predicament must be terrible for you and if you are dealing with this alone, so much more for you to cope with. Is there anyway you could choose the best home in terms of its' suitability for him, i.e. rural setting or perhaps near a large park, then ask friends or relatives to visit on a rota and take him for lovely long walks. If there are not enough people to help could you possibly pay an extra carer to walk with him - this will help his continued fitness and provide stimulation which Jeremy Kyle, bingo and singalongs will not do. I'm so sorry I cannot come up with any better ideas - without knowing how limited he is are there any other activities he would enjoy which you could suggest to the CH's and gauge their responses. Maybe no one has asked them yet.
 

JigJog

Registered User
Nov 6, 2013
236
0
Unfortunately we are now coming to the stage where I will no longer be able to care for my OH at home. So I have been looking round at homes locally. Firstly, because we are not well off, we need to find homes that will accept council funded clients. So that reduces our options and choices.

Secondly we have to choose homes that can deal with dementia patients, which reduces our choices and options even more.

Then they gave to be able to accept someone under the age of 65!

So today I went around and viewed the homes.

It's really very very depressing! They mostly cater for elderly, frail non mobile clients.

One home I went into had them all sitting watching Jetemy Kyle, saying they like Jeremy Kyle! Well so they may but if my OH wasn't already whacky (no offence intended!) he certainly would be by the time he'd been sitting watching that!

Others listed their 'activities' as bingo and 'singalongs'

The real problem is my OH is mobile, likes walks and nature not sitting watching TV or playing Bingo.

So, what's the alternative?

Yes I will still go and visit him, but I will have to get a full time job to enable me to stay in the house, so I will take him out at weekends, but it seems really cruel to incarcerate him somewhere where I know he will be unhappy!

As if making these decisions, for all of us, isn't hard enough, the lack of suitable facilities for younger people with dementia is appalling! And it makes the decision even more traumatic!

I know they are in a minority, and we live in a rural area, but I really have no idea what I'm going to do.

I've looked into a shared lives placement, but it doesn't seem as though they will be able to cope with him full time. So far, they have said they can take him for respite 3 days at a time!

I have looked on line, but the nearest places that would cater more readily for his needs are a good 2 hours drive away, and because they are small specialist facilities they cost a bomb and have huge waiting lists, and he would be totally isolated that far from home.

I am sure I have looked into everything I can and our social worker has been very helpful, but I just don't know what else I can do! :confused:

Oh, I know exactly what you mean! I am in the same situation. My OH is 61 and very mobile. He also loves to walk. I have looked at Daycare and full time care and they all say that what they are offering is not 'appropriate' for my OH because of his age and fitness. As you say, others are considerably older and more frail. There are just not enough facilities to care for Young Onset Alzheimer's.

I'm going to consider employing a carer myself, to come to our home and walk with my husband and do the things I know he likes. It's a fraction of the cost of residential care and I know he will be happier. It's early days for me yet and I still have a lot to consider, but under the circumstances, I think it's the way to go for us.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
In the early days of OHs dementia, we had respite Carers for 3 hr slot, and they would walk him all over. Whilst some of them were from the county council respite service ( no longer in operation) the others were from a nearby village, who train their own Carers and do all the paperwork. There is another village in the county who do this. Very cheap way of care! So might be worth looking around locally.
 

jjude

Registered User
Jan 4, 2011
34
0
England
In the early days of OHs dementia, we had respite Carers for 3 hr slot, and they would walk him all over. Whilst some of them were from the county council respite service ( no longer in operation) the others were from a nearby village, who train their own Carers and do all the paperwork. There is another village in the county who do this. Very cheap way of care! So might be worth looking around locally.

Following on from the post about the possibility of a private carer is it worth checking to see if there are any of the societies befrienders in your area who could perhaps be of assistance to you.
 

triumph25

Registered User
Apr 2, 2012
89
0
Forest of Dean
Thanks!

Thank you all for your comments. I hadn't thought of paying for a carer to go into the care home and take him out for a while. That's a really good idea, and there are one or two of the carers we have in now that might well be willing to do that!

Unfortunately OH relatives haven't visited since Jan 2013! :mad:& I have no expectations that they will start now and we have no children, so it very much falls solely on me.

I just can't cope with him at home anymore on my own. :(

But thank you all, it's nice to know that TP is there as a shoulder to cry on!
 

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