My husband, Bernard was diagnosed with familial Alzheimer's in August 1999 at the age of 54. In Nov 2003 he was admitted to a young dementia unit at a local care home. I coped reasonably well whilst he lived at home considering the numerous brick walls, post code lottery re Aricept, constant changes of CPN's and social workers delays left right and centre. Virtually no support from the local PCT re respite care. It seems everything was thrown at us. I survived by working a couple of hours a week and auto pilot.
Last June my husband was moved upstairs to the EMI unit owing to a variety of circumstances. It was (and still is)awful. He is obviously the youngest, stimulation was (and still is) in short supply, shortage of regular staff who do not know him and to put it bluntly the standard of care very much lower than that of the previous unit. In the space of six months there has been a marked deterioration.
The result of all this has greatly increased my feelings of guilt. Before I blamed the PCT and social services because if he had had good day respite I would have been able to cope much better with his aggression etc. I had no feelings of guilt on putting him in hospital and subsequently the home four years ago, he was doubly incontinent, extremely aggressive(his nickname was the smiling assasin),strong, very mobile and he was losing his ability to converse. Now he has reverted to his old self and I just wish it was possible to move him out of there and back home I leave the home often in tears, knowing that despite whatever I do or say it won't change his circumstances. I feel I have let him (and myself) down despite all that I have done these past 9 years.
I am now very wary in getting involved with any carers issues whether at Azheimer's meetings or the local council run resource centre as it makes me feel even more inadequate. Even reading the AS magazine and how others cope for longer makes me feel bad.
I am told that I am being very hard on myself and that I did everything possible for him. 'Everything possible' would have been to keep him at home with more support for longer rather than locking him away among people almost old enough to be his parents.
Life goes on and I am working on it. A new job has helped but that guilt won't go away.
Last June my husband was moved upstairs to the EMI unit owing to a variety of circumstances. It was (and still is)awful. He is obviously the youngest, stimulation was (and still is) in short supply, shortage of regular staff who do not know him and to put it bluntly the standard of care very much lower than that of the previous unit. In the space of six months there has been a marked deterioration.
The result of all this has greatly increased my feelings of guilt. Before I blamed the PCT and social services because if he had had good day respite I would have been able to cope much better with his aggression etc. I had no feelings of guilt on putting him in hospital and subsequently the home four years ago, he was doubly incontinent, extremely aggressive(his nickname was the smiling assasin),strong, very mobile and he was losing his ability to converse. Now he has reverted to his old self and I just wish it was possible to move him out of there and back home I leave the home often in tears, knowing that despite whatever I do or say it won't change his circumstances. I feel I have let him (and myself) down despite all that I have done these past 9 years.
I am now very wary in getting involved with any carers issues whether at Azheimer's meetings or the local council run resource centre as it makes me feel even more inadequate. Even reading the AS magazine and how others cope for longer makes me feel bad.
I am told that I am being very hard on myself and that I did everything possible for him. 'Everything possible' would have been to keep him at home with more support for longer rather than locking him away among people almost old enough to be his parents.
Life goes on and I am working on it. A new job has helped but that guilt won't go away.