I haven’t made a post much but read the forum often as it gives me comfort that I’m not alone. In particular, not being alone in the complete blindness of what happens next.
My mum went thru a rapid decline when living in her own home independently around 2019/2020, she was 69. They’d been signs for a year or so, but in the early days of covid things nosedived and by July she’d had a physical fight with a visiting carer, escaped, legged it into town and police were involved. She’s never left a care home since that day.
The area of her brain affected by Alzheimer’s is atypical. And this has been evidenced by her years of struggling with some areas, and totally fine in others. Medical and care staff say it’s an unusual pattern.
Fast forward and she’s had two rapid declines since Christmas. Notably when she has them she gets very physically aggressive and refuses medication, liquids and foods. They test for a UTI and up her trazadone (eventually) and we plateau for a bit.
She’s always been quite mobile, known for endlessly pacing the same halls of her floor.
She’s been fully doubly incontinent for 6 months+, she rarely leaves her floor - despite carers encouraging her, she eats and drinks very little, and has lost weight, she stopped recognising me in May - but she seems to know she can trust me and complies if the carers are struggling, she begs me sometimes to make sure she is ok and for me and my mother to look after her, keep her safe, since June she is often quietly mumbling to herself random words and broken delusions, I can sometimes get a broken sentence, on Sunday she was just glazed over, sometimes looking at me, sometimes the wall, but barely engaged. She wanders at night, sometime just sitting in the social areas, staring. But less and less so as she shuffles and just sits in a chair more. They say she’s better at eating and taking meds, but still very little.
I’m on my own with this. My brother has never been close. Him and his family last made the second of their two 2-3 hour visits since 2017 last April to go for a pub lunch. They live a two hour drive away. Once again they questioned if she needed to be in a home - she had a good day. No present or cards at Christmas. No asking how she is for over a year.
Her closest friend used to question all the time if she needed to be in a home.
Despite all the medical assessments, hospital reports, Dols. So I’ve avoided contact and he’s not visiting or contacting me anymore, but writes to my mum with his phone number thinking she can just pick up her mobile for a chin wag.
So, althou supported by my partner (who has never visited the home, part pandemic and now as not to confuse mum as she doesn’t remember him, and she detests the male carers) so I’m alone.
Just me, working it out. Except I’m not all alone - because I come here, and I see the amount of support and care available to anyone facing these challenges.
to close, I will share the worst feeling we all have, the answer to the question no one can answer - when? - EoL might begin tomorrow. Sure, I’d feel so reassured and relieved if someone replied and said, “yep, same here, and it was only another couple of weeks”. But realistically, it’s anytime between now and many many months.
And although I feel guilty, and I think a lot of us feel the same, it comes from a place of love and of care, to want her to be let free from her illness rather than suffer. If she ever knew in her pre-illness life she would be “living” like this, it would break her. She’d want to be let go. And I want to be let go from the years of tears and trying and trauma.
My mum went thru a rapid decline when living in her own home independently around 2019/2020, she was 69. They’d been signs for a year or so, but in the early days of covid things nosedived and by July she’d had a physical fight with a visiting carer, escaped, legged it into town and police were involved. She’s never left a care home since that day.
The area of her brain affected by Alzheimer’s is atypical. And this has been evidenced by her years of struggling with some areas, and totally fine in others. Medical and care staff say it’s an unusual pattern.
Fast forward and she’s had two rapid declines since Christmas. Notably when she has them she gets very physically aggressive and refuses medication, liquids and foods. They test for a UTI and up her trazadone (eventually) and we plateau for a bit.
She’s always been quite mobile, known for endlessly pacing the same halls of her floor.
She’s been fully doubly incontinent for 6 months+, she rarely leaves her floor - despite carers encouraging her, she eats and drinks very little, and has lost weight, she stopped recognising me in May - but she seems to know she can trust me and complies if the carers are struggling, she begs me sometimes to make sure she is ok and for me and my mother to look after her, keep her safe, since June she is often quietly mumbling to herself random words and broken delusions, I can sometimes get a broken sentence, on Sunday she was just glazed over, sometimes looking at me, sometimes the wall, but barely engaged. She wanders at night, sometime just sitting in the social areas, staring. But less and less so as she shuffles and just sits in a chair more. They say she’s better at eating and taking meds, but still very little.
I’m on my own with this. My brother has never been close. Him and his family last made the second of their two 2-3 hour visits since 2017 last April to go for a pub lunch. They live a two hour drive away. Once again they questioned if she needed to be in a home - she had a good day. No present or cards at Christmas. No asking how she is for over a year.
Her closest friend used to question all the time if she needed to be in a home.
Despite all the medical assessments, hospital reports, Dols. So I’ve avoided contact and he’s not visiting or contacting me anymore, but writes to my mum with his phone number thinking she can just pick up her mobile for a chin wag.
So, althou supported by my partner (who has never visited the home, part pandemic and now as not to confuse mum as she doesn’t remember him, and she detests the male carers) so I’m alone.
Just me, working it out. Except I’m not all alone - because I come here, and I see the amount of support and care available to anyone facing these challenges.
to close, I will share the worst feeling we all have, the answer to the question no one can answer - when? - EoL might begin tomorrow. Sure, I’d feel so reassured and relieved if someone replied and said, “yep, same here, and it was only another couple of weeks”. But realistically, it’s anytime between now and many many months.
And although I feel guilty, and I think a lot of us feel the same, it comes from a place of love and of care, to want her to be let free from her illness rather than suffer. If she ever knew in her pre-illness life she would be “living” like this, it would break her. She’d want to be let go. And I want to be let go from the years of tears and trying and trauma.
