Hello. Well. I guess I’m a carer! I’ve lurked for a while, reading posts but thought I should add something too; something that tells about the 'now' and not what's to come. A future reminder to me, perhaps.
For just about three years now I’ve done - and do - just about everything for my 84 yo, vascular dementia diagnosed (2018), mum: issues were apparent (to me, anyway) prior to the diagnosis and at the moment the challenges are bearable. She is fairly mobile with a frame, can still hold a conversation most of the time; can, more often than not, get to the bathroom when needed. Fractured her femur in December 2017 following a 2:00am fall, was then in hospital with various degrees of illness and delirium, for nearly four months, which persisted for around eight or nine months once she’d come home. Short-term memory is quite bad but, for the most part stable, - I’ve variously been my father, my cousin, my brother, a man waiting for someone, the hotel manager, and her brother: it’s 50-50 she’ll remember my name at any given time. There's intermittent sun-downing. She hasn’t, for at least a couple of months now, asked ‘where’s your father gone?’ He died around thirty years ago. She seems to have absorbed the fact that her own parents, and siblings, have all died, and that she’s ‘the only one left of her family now’ as she puts it. She’s stopped going through her birthday book and asking ‘who is … ?’. Too often the answer being her youngest daughter, my sister, who died when she was a baby. Tough question to be asked more than once.
I’ve three siblings all within fifteen minutes of this house I now share with mum; the family home of almost sixty years. I don’t know if they qualify as “invisibles”. They each arrive for an hour or so a week, sit in the lounge, drink tea and go home. In the three years I’ve done this, except to randomly change mum’s bed sheets - maybe every couple of months - they’ve never lifted a finger to help. When I asked for help around summer 2018, one sister, a nurse, sent me the nastiest text I’ve ever received from anyone; my other sister, a care worker, sent me pretty much the same text four days later - they’d clearly spoken; my brother never answered. I’ve never asked them for help since. Their attitude is beyond my comprehension; the best I can come up with is I’m ‘profoundly dumbfounded’. I left home aged 18 and received nothing from my parents thereafter; my siblings stayed around and took as much benefit as they could get in the intervening 40 years. I've stopped being angry but I’ll never forgive them for the way they’ve behaved now: dad would be ashamed of them. But they’ve made their choices and I’ve made mine.
I’ve read so many contributions to these pages, people, other carers, leave me open-mouthed in awe. I know, in comparison to so many, I have it relatively easy. It doesn’t stop me hoping, praying, that old age will take mum before the vascular dementia does. And I don’t feel bad about that: quality of life over quantity, I guess. I have a list in my head. It has two items on it. Item one is, “I don’t want to do this. I don’t want to be the one responsible for …”. Item two is, “It has to be done and if you don’t do it, it won’t be done”. So I do it. As good humouredly as I can. And there are laughs. The plastic owl that was staring at her; trying to use the ‘gripper’ holding the wrong end; thinking she’d secretly been moved to France when she was in hospital ; trying to give away her clothes because all belonged to the people who ‘lived here before’ …
For just about three years now I’ve done - and do - just about everything for my 84 yo, vascular dementia diagnosed (2018), mum: issues were apparent (to me, anyway) prior to the diagnosis and at the moment the challenges are bearable. She is fairly mobile with a frame, can still hold a conversation most of the time; can, more often than not, get to the bathroom when needed. Fractured her femur in December 2017 following a 2:00am fall, was then in hospital with various degrees of illness and delirium, for nearly four months, which persisted for around eight or nine months once she’d come home. Short-term memory is quite bad but, for the most part stable, - I’ve variously been my father, my cousin, my brother, a man waiting for someone, the hotel manager, and her brother: it’s 50-50 she’ll remember my name at any given time. There's intermittent sun-downing. She hasn’t, for at least a couple of months now, asked ‘where’s your father gone?’ He died around thirty years ago. She seems to have absorbed the fact that her own parents, and siblings, have all died, and that she’s ‘the only one left of her family now’ as she puts it. She’s stopped going through her birthday book and asking ‘who is … ?’. Too often the answer being her youngest daughter, my sister, who died when she was a baby. Tough question to be asked more than once.
I’ve three siblings all within fifteen minutes of this house I now share with mum; the family home of almost sixty years. I don’t know if they qualify as “invisibles”. They each arrive for an hour or so a week, sit in the lounge, drink tea and go home. In the three years I’ve done this, except to randomly change mum’s bed sheets - maybe every couple of months - they’ve never lifted a finger to help. When I asked for help around summer 2018, one sister, a nurse, sent me the nastiest text I’ve ever received from anyone; my other sister, a care worker, sent me pretty much the same text four days later - they’d clearly spoken; my brother never answered. I’ve never asked them for help since. Their attitude is beyond my comprehension; the best I can come up with is I’m ‘profoundly dumbfounded’. I left home aged 18 and received nothing from my parents thereafter; my siblings stayed around and took as much benefit as they could get in the intervening 40 years. I've stopped being angry but I’ll never forgive them for the way they’ve behaved now: dad would be ashamed of them. But they’ve made their choices and I’ve made mine.
I’ve read so many contributions to these pages, people, other carers, leave me open-mouthed in awe. I know, in comparison to so many, I have it relatively easy. It doesn’t stop me hoping, praying, that old age will take mum before the vascular dementia does. And I don’t feel bad about that: quality of life over quantity, I guess. I have a list in my head. It has two items on it. Item one is, “I don’t want to do this. I don’t want to be the one responsible for …”. Item two is, “It has to be done and if you don’t do it, it won’t be done”. So I do it. As good humouredly as I can. And there are laughs. The plastic owl that was staring at her; trying to use the ‘gripper’ holding the wrong end; thinking she’d secretly been moved to France when she was in hospital ; trying to give away her clothes because all belonged to the people who ‘lived here before’ …
