Hi all,
I haven't been on here for a while, as the past few months have been consumed with caring for my dad (he was diagnosed with Lewy Body Dementia in January and has deteriorated during the past three months at a rate none of us imagined was even possible). My mother, sister and I have worked a rota so that there was always someone there, as dad requires 24 hour care. In the past couple of weeks he's now been classed by the social worker and nurse as high dependency, as he is barely mobile (it now takes two people to move him, get him up from chair, take him to the toilet, etc) and he is at risk of choking when he eats or drinks anything (even water).
This week, dad went into a residential home for respite care, to give us a 10 day break to recharge our batteries (I have been looking after dad during the day times and then working in the evenings, my sister does the opposite, and my mother has been caring for him overnight which involves little sleep as he is very restless and does not sleep for more than a maximum of two hours at a time). Yesterday (dad's third day there) one of the nurses chatted with my mother and me and told us that we would no longer be able to maintain caring for him at home with the needs he now has. She told us that his condition is likely to continue to deteriorate rapidly, and that we don't have the skills or the means to care for him and keep him safe at home. There were a lot of tears. When I got home after work, I looked into additional support, such as using a night sitting service to help us care for dad in his own home. When I mentioned it to my mother, she was quick to dismiss it, and this left me confused and hurt. When I left the care home yesterday, dad told me that he had been 'stitched up' by his family. He refused to go to the day room, as he said it was embarrassing for other people to see him cry. It was completely heart breaking. I cried in the car on the way to work, having told dad before I left that I love him, and having had him reply with, 'I used to think you did'.
To sum up, I am worried that my mother has just simply had enough and doesn't want to have dad back home. I realise that his needs are great at this stage, but I also feel that home is the best place for him. I'm worried that his condition will deteriorate far more rapidly when he's in an environment that makes him feel agitated and unhappy, and alone with thoughts that his family has abandoned him. Yes, caring for him is physically and mentally exhausting, but none of this is his fault - he has fallen victim to the most awful, cruel, debilitating disease. My relationship with my mother has been fragile for months now, as has my sister's. I don't want there to be any more bad feeling, but we are never going to agree on this. Has anyone else experienced anything similar? How do people cope with the decision of moving a relative away from home? The guilt is overwhelming. I just want dad back home. Is this being selfish, or is this right? Is there ever a right answer?
I haven't been on here for a while, as the past few months have been consumed with caring for my dad (he was diagnosed with Lewy Body Dementia in January and has deteriorated during the past three months at a rate none of us imagined was even possible). My mother, sister and I have worked a rota so that there was always someone there, as dad requires 24 hour care. In the past couple of weeks he's now been classed by the social worker and nurse as high dependency, as he is barely mobile (it now takes two people to move him, get him up from chair, take him to the toilet, etc) and he is at risk of choking when he eats or drinks anything (even water).
This week, dad went into a residential home for respite care, to give us a 10 day break to recharge our batteries (I have been looking after dad during the day times and then working in the evenings, my sister does the opposite, and my mother has been caring for him overnight which involves little sleep as he is very restless and does not sleep for more than a maximum of two hours at a time). Yesterday (dad's third day there) one of the nurses chatted with my mother and me and told us that we would no longer be able to maintain caring for him at home with the needs he now has. She told us that his condition is likely to continue to deteriorate rapidly, and that we don't have the skills or the means to care for him and keep him safe at home. There were a lot of tears. When I got home after work, I looked into additional support, such as using a night sitting service to help us care for dad in his own home. When I mentioned it to my mother, she was quick to dismiss it, and this left me confused and hurt. When I left the care home yesterday, dad told me that he had been 'stitched up' by his family. He refused to go to the day room, as he said it was embarrassing for other people to see him cry. It was completely heart breaking. I cried in the car on the way to work, having told dad before I left that I love him, and having had him reply with, 'I used to think you did'.
To sum up, I am worried that my mother has just simply had enough and doesn't want to have dad back home. I realise that his needs are great at this stage, but I also feel that home is the best place for him. I'm worried that his condition will deteriorate far more rapidly when he's in an environment that makes him feel agitated and unhappy, and alone with thoughts that his family has abandoned him. Yes, caring for him is physically and mentally exhausting, but none of this is his fault - he has fallen victim to the most awful, cruel, debilitating disease. My relationship with my mother has been fragile for months now, as has my sister's. I don't want there to be any more bad feeling, but we are never going to agree on this. Has anyone else experienced anything similar? How do people cope with the decision of moving a relative away from home? The guilt is overwhelming. I just want dad back home. Is this being selfish, or is this right? Is there ever a right answer?