My mother was diagnosed late 2016. At first I found the getting up during the night difficult to deal with but I devised a strategy. I learned not to leave her clothes or teeth or glasses downstairs in case she put them on, read the GO back to bed signs ( o the wonderful days when she could read...),and took them off, leaving them somewhere obscure. Then last year, when she wandered out and locked herself out, I started thinking of ways of dealing with this. We had a re-structure at work and I requested
to be able to stay local and not do more nights. I was assigned to another town and another night, so I had to turn that down and lost £160 per month in the process. I got into a rhythm with respite ( thank God for respite-mum is Irish, and a very friendly soul, she settled in wherever she was put).
I was n't worried about how she was when I was at work.She could read her magazines. Until last year, when she lost the ability to read , that is. I struggled against it, willed her to be able to understand the messages I had left for her This is Wednesday Charles will be back after 8. I felt I was losing control of my life and my mother's. Then there were the toileting issues. I joked about how my life was ruined by the oriental twins Pee and Poo, but it was still hard to accept. Every year something goes. This year she has had a cold twice, and she lost her mobility and was more confused than before. I had her taken to hospital to nip any infection in the bud, but she was worse when she came back. Now she is bedbound and I can only hope it's a temporary reaction to the infection.
But I feel I am losing control of my life, what with carers and physios and everyone . I am being told that I will need to get a hospital bed put in, but dread the disruption it will mean to our small house( the whole business of getting rid of a perfectly good double bed we have no space for, for a start..). The phrase I use is that I feel like a bystander in my own life. I know that it is good to keep mum at home rather than have her in hospital, but it's a relentless wearing away, an erosion, not just for mum, but for me too. I feel I am losing myself.
Incidentally, I am an only child and the sole carer, but I am all too aware that having siblings doesnt mean the caring is shared, so I harbour no delusions there. i do get annoyed onthe rare occasions when I see my cousins and they ask how mum is. I have to bite my tongue or I would get very very rude indeed. I have found that water is thicker than blood. Sorry for rambling on, I just feel adrift at times.
to be able to stay local and not do more nights. I was assigned to another town and another night, so I had to turn that down and lost £160 per month in the process. I got into a rhythm with respite ( thank God for respite-mum is Irish, and a very friendly soul, she settled in wherever she was put).
I was n't worried about how she was when I was at work.She could read her magazines. Until last year, when she lost the ability to read , that is. I struggled against it, willed her to be able to understand the messages I had left for her This is Wednesday Charles will be back after 8. I felt I was losing control of my life and my mother's. Then there were the toileting issues. I joked about how my life was ruined by the oriental twins Pee and Poo, but it was still hard to accept. Every year something goes. This year she has had a cold twice, and she lost her mobility and was more confused than before. I had her taken to hospital to nip any infection in the bud, but she was worse when she came back. Now she is bedbound and I can only hope it's a temporary reaction to the infection.
But I feel I am losing control of my life, what with carers and physios and everyone . I am being told that I will need to get a hospital bed put in, but dread the disruption it will mean to our small house( the whole business of getting rid of a perfectly good double bed we have no space for, for a start..). The phrase I use is that I feel like a bystander in my own life. I know that it is good to keep mum at home rather than have her in hospital, but it's a relentless wearing away, an erosion, not just for mum, but for me too. I feel I am losing myself.
Incidentally, I am an only child and the sole carer, but I am all too aware that having siblings doesnt mean the caring is shared, so I harbour no delusions there. i do get annoyed onthe rare occasions when I see my cousins and they ask how mum is. I have to bite my tongue or I would get very very rude indeed. I have found that water is thicker than blood. Sorry for rambling on, I just feel adrift at times.