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Old 30-11-17, 12:07 PM   #1
Nannie 02
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Hi my name is Jenny. I don't have Hd but I have lived with it a long time. My husband had it and passed away 22 years ago, my daughter has it and is now in care and doesn't know us any more.
I look after my grandson why also has HD and because of my age and health cannot care for him any longer and have found a lovely care home that specialises in HD, but is refusing to go.
I am finding this very upsetting. Has anyone had this problem, if how did they deal with it.
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Old 01-12-17, 06:03 PM   #2
HDAModerator
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Quote:
Originally Posted by Nannie 02 View Post
Hi my name is Jenny. I don't have Hd but I have lived with it a long time. My husband had it and passed away 22 years ago, my daughter has it and is now in care and doesn't know us any more.
I look after my grandson why also has HD and because of my age and health cannot care for him any longer and have found a lovely care home that specialises in HD, but is refusing to go.
I am finding this very upsetting. Has anyone had this problem, if how did they deal with it.
Hi Jenny
I am so sorry to hear about this , it must be very difficult for you after so many years of caring for your loved ones.
If your grandson hasn't visited or seen the home maybe he could go to have a look round. This would give him a chance to see staff and meet other residents, even have a short stay if that is possible.It is such a big step for him but I understand you cannot continue to look after him.
It might be helpful to have contact with your local Specialist Adviser . If you don't know who this is please do ring Head Office on 0151 331 5444 and they can out you in touch.
Fiona
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Old 03-12-17, 12:14 PM   #3
Trish
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Quote:
Originally Posted by Nannie 02 View Post
Hi my name is Jenny. I don't have Hd but I have lived with it a long time. My husband had it and passed away 22 years ago, my daughter has it and is now in care and doesn't know us any more.
I look after my grandson why also has HD and because of my age and health cannot care for him any longer and have found a lovely care home that specialises in HD, but is refusing to go.
I am finding this very upsetting. Has anyone had this problem, if how did they deal with it.
Hi Jenny

Welcome to Messy Board

So sorry to hear HD has impacted on your, and of course your loved ones, so much.

I can't offer much by way of experience in care homes as I was able to keep my hubby who had HD at home but it was a struggle. To have had 3 generations to cope with whether at home or in a nursing home... Well let's just say I would have gone under so it is a real testament to you that you have managed so far!

Fiona has given good advice. I just wonder though if even the best home in the world would not seem acceptable to your grandson as he sees his mum having changed that much, or not coming home if he doesn't see her anymore.

You need a care assessment, or another one if you are already under their auspices as it's clear you need more help until such time as your grandson is given full time care in a home.

Is there any way the home can take him on a gradual build up basis? Effectively one week 'respite; then he comes back to you for a couple of weeks; then he goes back there for two weeks and comes back to you for a week and there is a gradual move in as it were?

I'm not sure how that works in terms of funding but I do know where I work in the mental health sector; when some patients are being discharged back to the community (a 24 hour hostel for example) there is often what they call a period of testing. The patient having a few days; then a few overnights; then a weekend etc. I appreciate it's not the same kind of situation as the people are in mental healthcare hospitals looking at getting out but the principle of building up trust for both sets of parties still applies.

If I had my own way, and ruled the world, I'd enforce a set up along the lines of 'John's Campaign' where hospitals etc must make more provision to accommodate carers in the care of patients. To the point of having accommodation for them to stay with the patients for a while so that the transition is not so brutal as it were.

Quote:
Instead, carers should be welcomed and valued: the patientís memory, their voice, their safe place and their way home.
I know with a disease like HD 'their way home' is not necessarily going to apply in real life but in the patient's memory and mind...

More details on John's Campaign can be seeen HERE
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I tried.
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Old 04-12-17, 06:50 PM   #4
Nannie 02
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Originally Posted by Trish View Post
Hi Jenny

Welcome to Messy Board

So sorry to hear HD has impacted on your, and of course your loved ones, so much.

I can't offer much by way of experience in care homes as I was able to keep my hubby who had HD at home but it was a struggle. To have had 3 generations to cope with whether at home or in a nursing home... Well let's just say I would have gone under so it is a real testament to you that you have managed so far!

Fiona has given good advice. I just wonder though if even the best home in the world would not seem acceptable to your grandson as he sees his mum having changed that much, or not coming home if he doesn't see her anymore.

You need a care assessment, or another one if you are already under their auspices as it's clear you need more help until such time as your grandson is given full time care in a home.

Is there any way the home can take him on a gradual build up basis? Effectively one week 'respite; then he comes back to you for a couple of weeks; then he goes back there for two weeks and comes back to you for a week and there is a gradual move in as it were?

I'm not sure how that works in terms of funding but I do know where I work in the mental health sector; when some patients are being discharged back to the community (a 24 hour hostel for example) there is often what they call a period of testing. The patient having a few days; then a few overnights; then a weekend etc. I appreciate it's not the same kind of situation as the people are in mental healthcare hospitals looking at getting out but the principle of building up trust for both sets of parties still applies.

If I had my own way, and ruled the world, I'd enforce a set up along the lines of 'John's Campaign' where hospitals etc must make more provision to accommodate carers in the care of patients. To the point of having accommodation for them to stay with the patients for a while so that the transition is not so brutal as it were.



I know with a disease like HD 'their way home' is not necessarily going to apply in real life but in the patient's memory and mind...

More details on John's Campaign can be seeen HERE
Hello
Thank you for the advice, I contacted the care home and they are visiting us tomorrow. It has been suggested that they collect my grandson and take him for a day visit to start with.
They care for two people who are of similar age, he has been worried he would be with older people. When he is having a good day he does understand that I can no longer give him the care he needs.
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