Still looking for someone as young as my husband with Alzheimers and Parkinsons


#1

I am still looking for someone who has/is caring for someone who has the double diagnosis of Parkinsons and Alzheimers Disease who was diagnosed under 60.  I also post on Alzheimers Disease Forum but cannot find anyone who is in my 'boat' which is a lonely place, especially as I have had to put my husband into permanent care at the age of 62, something I will have to live with but can't come to terms with. Feel really alone and isolated with all this and I am dreading the impending dark nights.         


#2

Hi Beannie,

I am sorry to read you are feeling alone and isolated.

Have you considered giving our Peer Support Service a ring? The service is for both people with Parkinson's and their carers. You will be put in touch with a trained volunteer who has a similar experience to you. You can find out more about this service here: http://www.parkinsons.org.uk/content/our-peer-support-service.

We also have local Parkinson's UK groups throughout the UK, which welcome carers and family members: http://www.parkinsons.org.uk/content/local-groups.

I hope this will help you.

With best wishes,

Ilona

Moderation Team


#3

Hi Beannie

Sorry to here about your OH , I was DX with Parkinson in June last year and Lewy Body dementia in August this year so bit of a double shock to the system .

I know Alzheimer's and Lewy body are different but the outcome will be the same , I am 58 years old by the way so considered quite young for the dementia side of things.

My OH and myself have talked at length about the future and I've let her know that when the time comes she must do what's best for both of us and even if I don't understand at the time if she needs to put me into care I understand now , and hope that will give her some comfort when it has to happen , as I know it will happen one day. 

I don't know of anything that I can write to make you feel any different about your situation other than deep down your OH  on some level will know it was the right thing to do at the right time for both of you.

I hope that in some way I have been helpful and I hope things work out in the future.

Take care and live well   Cc

 


#4

Hi Cheshire Cat,

Sorry to hear of your diagnosis of Parkinsons and Lewy Body Dementia.  As you rightly say the outcome will be the same.

It is quite comforting to hear from someone else who has been diagnosed under 60 as I don't feel that my OH is the only one. Which is why I have been trying to find someone else in our boat.

D and I did have the care home discussions about 2 years ago and he said when the time comes you must do what is necessary including putting me in a home if you cannot cope with me anymore. I had no choice 7 weeks ago we just could not continue at home and D was pleading with me to put him in a home or else he was going to take all his tablets!!

You have been extremely helpful and I thank you for replying to my post.

Best wishes, Beannie