Aisling I really really understand what you are saying. I have no easy answers but can only tell you what I have experienced for myself.
My wonderful husband was diagnosed 4 years ago. He has never at any point had any insight into his condition, so I have managed the situation throughout. When things became more serious, I was advised, two years ago almost to the day, to put him into residential care. At that time I still felt I could communicate with him at some level and give him some quality of life.
I engaged carers 3 times a day to deal with getting him up, dressing, showering, toileting etc etc. He was doubly incontinent and I, after initial horror, learnt to deal with that. I carried spare pads, used disabled toilets, helped him eat, sat with him in the sun, reassured him that all this was normal and nothing to worry about. For a while I could take him out for coffee, walks etc and I know I gave him a bit of life and pleasure for as long as he could enjoy it. People said I was mad, but I always knew somehow that I would know when I would have to let him go and it wasn't that time yet.
Sadly last October he deteriorated further, being unable to stand, transfer, eat unaided. He was, however, as he has always been, totally unruffled, calm and lovely. He went into an assessment centre to determine his needs. I continued to try to persuade myself that our imminent move to an adapted apartment, plus upping the carers I was paying for would allow me to keep him at home.
I'm not sure when, but at some point it just became clear to me that I was trying to keep him for my sake and not for his. He was calm and untroubled with the routine in the assessment centre. He was not distressed when I left him. With support from the mental health team and social services I began the painful process of finding him a residential placement.
For the first few weeks I still couldn't accept he wasn't coming home and couldn't really believe that it was the best thing for him. But, however painful it is for me, and I can tell you I am crying as I write this, I had to slowly confront the awful truth that , within a very few weeks, he saw the care home as 'home'. He is calm, looks well, has steadily got used to the very nice staff and sees nothing peculiar about the situation.
I am really afraid now that perhaps I should have let him go earlier. Perhaps I stressed him more by trying to give him a bit more life, trying to prolong our relationship, which had been so very very close for 42 years, for myself and not for his good.
Now I visit him regularly, though not every day. He has a nice room and TV. Conversation went long ago, but if I am calm and happy and show no sign of distress, he will hold my hand and kiss me, and be calm and cheerful when I say goodbye. I do know it is the right thing for him. But - I still cry all the way home.
I have finally come to accept that really he has gone. I believe I still have a role to play in continuing to provide reassurance and comfort. Touching, feeding him, talking to him as if it is the most natural thing in the world is what I must stay strong to do for him. But I know too that somehow I have to make a life myself so that I don't go to pieces. I must stay able to support and love him and in many ways that is easier now that the stress of physically caring has been lifted from me.
I bitterly resent that we have had to pay for everything, day centres, carers, and now the home, but at least I have been able to make sure I have found the very best for him I can only says that in some ways now it is not as bad as I expected it to be. He is safe and I can be near him without the unpleasant bits.
we are all different Aisling, but you have to find a way to survive this, I just hope that knowing my route might help or reassure you. With love. x
