Hi, lurked a little in the forum as looking for support.
18 months ago I had to quit nursing as my mother, who has ischemic heart disease and had early onset dementia (its now full blown ?) and my aunt, who has lived with her for nearly 40 years, had a stroke and ended up with frontal lobe dementia secondary to the cva.
My brother lives 200 miles away. He financially managed their money as we discovered she had run up 27k of debt - couldn't even explain where from by that point! So, we decided to sell her house and they would move in with my husband, me and the children. He relinquished control of the finances to myself and the small amount of equity went towards investing in a larger property.
Having worked in nursing and care homes I know the constraints of provision. I know the well meaning neglect that comes from looking after 42 residents - not to mention the endless relative input when they don't have 24 hr knowledge of mum/gran/dad/grandad and just exactly what they've been like to deal with. So it seemed much more logical for me to look after them.
But wow! Does anyone else who looks after their parents directly - and I don't mean the ones who have carers but actually does the caring 24/7 - ever just want to go arghhh?
For instance, my mother's instance that she has nothing wrong with her but can't work out how to use an advent calendar, make a sandwich, use just small change, is incontinent, forgets who we are and is insistent that chernobyl happened in the 1950s and that given the opportunity my husband would leave me in a heartbeat for her - oh and that surely he grew up in the 1940s and 50s?
Then my aunt, who can't remember anything. Words. Sentences. What she had for breakfast that day. Whether she's eaten. Whether she's hungry. What she likes, what she doesn't like. And she is mostly just angry. So angry. That I'm her jailor. Or I'm a bitch. Or this or that.
My mum is convinced that she could go into town by herself, but she can't remember where she is. Prior to moving in with us, she completely forgot to take her medication. She thought she'd already had it. And then the best bit of that is she frequently just makes up a story either for cover, convenience or confusion!
It's so frustrating. Like another level of frustrating. When I worked in the nursing home, or when I encountered patients on the wards or in a and e, I had so much more patience. Mostly. Even if in my head I was silently screaming.
It's soooo hard. They couldn't handle a care home as the level of care they get at home is akin to a newborn dependency! They have a choice of breakfast, lunch and tea plus snacks. Drinks whenever they want. Television of all kinds, books and magazines (when they can remember how to read or how to use the remote). I try to take them out once a week - although lately I just haven't as my auntie complains it's too cold or pointless and my mum ends up getting lost.
Less than 2 years ago they could provide granny childcare. Now, I do everything....
I do care for them, my brother doesn't see the change necessarily as he only visits 2/3 times a year.
I've put my career on hold to give back the care they provided when I was a helpless newborn. But it is so hard. So very very hard.
Sigh. Anyway, yes, just wanted to rant a bit. See if anyone else, who actually provided the hands on, 24/7 relentless no respite or carers, care of their relatives could relate.
Thanks ?
18 months ago I had to quit nursing as my mother, who has ischemic heart disease and had early onset dementia (its now full blown ?) and my aunt, who has lived with her for nearly 40 years, had a stroke and ended up with frontal lobe dementia secondary to the cva.
My brother lives 200 miles away. He financially managed their money as we discovered she had run up 27k of debt - couldn't even explain where from by that point! So, we decided to sell her house and they would move in with my husband, me and the children. He relinquished control of the finances to myself and the small amount of equity went towards investing in a larger property.
Having worked in nursing and care homes I know the constraints of provision. I know the well meaning neglect that comes from looking after 42 residents - not to mention the endless relative input when they don't have 24 hr knowledge of mum/gran/dad/grandad and just exactly what they've been like to deal with. So it seemed much more logical for me to look after them.
But wow! Does anyone else who looks after their parents directly - and I don't mean the ones who have carers but actually does the caring 24/7 - ever just want to go arghhh?
For instance, my mother's instance that she has nothing wrong with her but can't work out how to use an advent calendar, make a sandwich, use just small change, is incontinent, forgets who we are and is insistent that chernobyl happened in the 1950s and that given the opportunity my husband would leave me in a heartbeat for her - oh and that surely he grew up in the 1940s and 50s?
Then my aunt, who can't remember anything. Words. Sentences. What she had for breakfast that day. Whether she's eaten. Whether she's hungry. What she likes, what she doesn't like. And she is mostly just angry. So angry. That I'm her jailor. Or I'm a bitch. Or this or that.
My mum is convinced that she could go into town by herself, but she can't remember where she is. Prior to moving in with us, she completely forgot to take her medication. She thought she'd already had it. And then the best bit of that is she frequently just makes up a story either for cover, convenience or confusion!
It's so frustrating. Like another level of frustrating. When I worked in the nursing home, or when I encountered patients on the wards or in a and e, I had so much more patience. Mostly. Even if in my head I was silently screaming.
It's soooo hard. They couldn't handle a care home as the level of care they get at home is akin to a newborn dependency! They have a choice of breakfast, lunch and tea plus snacks. Drinks whenever they want. Television of all kinds, books and magazines (when they can remember how to read or how to use the remote). I try to take them out once a week - although lately I just haven't as my auntie complains it's too cold or pointless and my mum ends up getting lost.
Less than 2 years ago they could provide granny childcare. Now, I do everything....
I do care for them, my brother doesn't see the change necessarily as he only visits 2/3 times a year.
I've put my career on hold to give back the care they provided when I was a helpless newborn. But it is so hard. So very very hard.
Sigh. Anyway, yes, just wanted to rant a bit. See if anyone else, who actually provided the hands on, 24/7 relentless no respite or carers, care of their relatives could relate.
Thanks ?
Last edited by a moderator:
