“I Feel Alone”
Marie Joseph cares for her husband, known as Joe, who developed vascular dementia after suffering a stroke over twenty years ago.
“I do everything for Joe, I need to be around him constantly,” says Marie.
“If I need to go out shopping, I limit it to an hour or so and only go when all his needs have been met and I feel that he can cope.
“Of course, there is some element of risk to that and it makes me anxious, fearing I’ll find something might have happened to him on my return home.
“When Joe was first diagnosed, we found the Alzheimer’s Society and our local Age Concern a great support and we attended activities and forums that he really enjoyed. So for the two hours we were there, it was a sort of respite for me too. The volunteers were wonderful and I could talk to them.
“Sadly, these finished because of shortages in funding. One former carer now voluntarily runs a session, which is brilliant for Joe and for me.
“Friendships have developed through this, although we are very much aware that we don’t want to impose on each other too much. I do manage to get out on a Monday night to play badminton, which I enjoy although I still worry whether Joe will be all right, and he does resent me leaving him at home.
“I can’t have the conversations or discussions with my husband that I used to have. Joe’s communication always reverts to what is in his mind at that point in time and his level of understanding varies from day to day.
“He has heard about the coronavirus, for example, and is now adamant that he has it and he has taken himself off to bed. I just can’t manage to reassure him otherwise. I feel a deep sense of aloneness and an acute sense of emptiness and feel that nobody truly understands my situation. I am almost not a person, I am just living for Joe. Where is my own life in all this? I am not actually in the picture.
“I have considered longer term respite care but I am not sure whether it would work for me. How would I tell Joe that I am going away for a week or two weeks? He would start being self-incriminating – ‘I am a burden’, ‘maybe I should go into care’ – as he does when he becomes frustrated or angry. For this reason, and also because of his many idiosyncrasies I feel unable to leave him with anyone really. He is my husband and I love him of course, but it is all very difficult.”