early onset AD carers

[daizee]

Iwould love to hear from any one who cares for a loved one with early onset AD My husband was diognosed at 47 and now at 53 is in the severe stage How has it affected the person you care for, and you as carer .How did it progress how do you cope and how do family members react..How have you come to terms with what is to come.I'm doing OK but now and then I'd like to hear from someone in the same boat. Thanks

 

[Brucie]

Hi daizee

welcome to Talking Point.

Iwould love to hear from any one who cares for a loved one with early onset AD. My husband was diagnosed at 47

My wife Jan was 50 when her symptoms started, but it took until she was 58 for the doctors to diagnose her formally. I had figured it out by the time she was 54.

and now at 53 is in the severe stage

How do you define "severe stage" in terms of your husband's condition?

How has it affected the person you care for,

utterly and completely, physically and mentally

and you as carer.

completely wrecked both our lives

How did it progress

Jan has both AD and Vascular dementia. It progressed slowly and steadily, with sharp progressions during the first 8 years. After that Jan's capabilities dipped greatly and she continues to decline at 65. I'm expecting perhaps another 10-12 years in the most severe stage

how do you cope

originally very badly [though not in front of Jan] with deep depression

and how do family members react.

Mine helped as much as they could which in practical terms was not a lot. Their support was very welcome and they were there for me. I just couldn't call on them. Jan's family pretty much disappeared

.How have you come to terms with what is to come.

By what is to come, do you mean another 12 years of the same, or Jan's death? If the former, I'll never come to terms with that as I don't have a helluva lot more left myself, and it stops me getting on with a new life fully - besides its being hell on earth for Jan. If you mean Jan's death, then I won't really know until it happens. At present my feelings are that it will be welcome because what she has now is not living. But every time I think "there can't be worse" then she drops another notch and that is worse.

Jan is now in specialist care home and is as well looked after as she can be. That situation doesn't change my position as a carer, of course, especially after 41 years together.