I've been in read-only mode for a long time. My views on the lives we allow our decaying loved ones to lead have only hardened as I supervise Mum's relentless decline, and it's made me... incompatible with the levels of compassion required to be civilised at times. Best to keep quiet than to risk upsetting folk again.
But I need to vent somewhere now, before I crack, and who else is going to understand the tortures dementia puts us through?
My mother's ongoing decline has been hard, but expected. We no longer go out for walks; I just help her hobble between bed and loo, loo and chair, chair and loo, loo and bed. Where this time last year we were getting back towards a mile a day after her broken leg, as the year drew on and the days got shorter, so did our walks. As the light faded, so did Mum's balance. And by Christmas she was housebound. Soon she will be bedbound.
We have a wheelchair now, and I used it to get Mum to a rather pokey and more crowded than I hoped vaccination centre last Saturday, so when the weather improves we will get out. But the less you use your body, the faster your body falls apart. It is the next phase of decay and it is... a challenge, mentally and physically.
We go on though. Because that's what you do.
Meanwhile, my father's health has declined. I made him promise not to get ill until I'd finished helping Mum on her journey, but... parents, nothing but trouble! They divorced a very long time ago and Dad was always a relatively distant part of my life, especially as he became part of a new family 20 miles away from Mum.
But Mum's decline brought us closer together. Partly because I was back up this end of the country. Partly because he was increasingly my biggest connection to Mum's evaporating past. And partly because it felt like his 'new' family weren't really keeping an eye on how he lived and aged when he wasn't with them. He was slipping towards some kind of mental decline too. But slowly, thankfully.
However last year he developed a mystery heart condition which stopped his walks and slowly dragged him down. I hoped maybe he'd had mild covid and this was a long covid type thing. But it wasn't and as his deafness also worsened, so did my ability to be any use to him whatsoever on the phone. I saw him just before the first lockdown, but then -- like so many -- I started taking shielding Mum very seriously indeed to avoid her dying alone in hospital. I've even paid our carer to stay away 'on call' for most of the year, because she has multiple clients (when they weren't scared, too) and a life of sorts. Even with the best of care and intentions, she was the most likely way covid would get through my care home-like paranoia.
So it was phone contact only with Dad. I should point out though that my brother stepped up well to help Dad, and my sister was able to do a little too. But neither could spend the kind of time he needed, and both live a lot further away. So, inevitably, Dad's decline eventually ended up with him hospitalised in early January. At first for a few days, then a few weeks as they struggled to control his problems. Then it started to look like it might be terminal.
And then covid caught up with him, earlier this week. He's now on 1-1 care, with some days more lucid than others, and they're trying to discharge him to a care home of some kind to, well... die, so they can try to save someone with a chance of surviving. I'm not up entirely sure what's going on and it's my brother who's dealing with it all as the main contact. He's even been in to visit, given full PPE because Dad's dying.
And I could go too.
This -- finally I get to the point -- is the reason I'm typing. I'm only an hour and a half away by train & walking to avoid any more contact than necessary. But no matter how hard my heart tells me I need to see him, and no matter how the nursing staff assure me I'll be safe, my head insists I can't spend time in a covid ward and risk bringing it home. Mum wouldn't last ten minutes. We're already managing a cough which rattles towards infection regularly. And she has the immune system with all the strength of a wet paper bag!
Of course there's that hard hearted bit of me which says "she wouldn't want to live like this anyway, so surely it's a risk worth taking?" But I've put so much effort into keeping her safe from this bloody virus... probably because I can't protect her from bloody dementia! And my brother's taking the risks so I don't have to. And if I get ill first, who's going to look after her?
Maybe if Dad can hang on a couple more weeks, Mum's first vaccine will have built up her resistance and I can take a more calculated risk. But you only have one day at a time to make choices. And eventually those choices run out.
And sometimes you can just go round and round and round in circles, finding new ways to torture yourself. Dad might have been a lousy husband and parent, but he's still my Dad. And I think part of the light at the end of the tunnel with Mum was the idea that I might find a purpose in life helping him once she's gone. So there's a bit of selfishness going on too, I'm sure. It's an emotional mess, and I don't get enough sleep these days to be coping with emotional mess well!
Anyway, enough self-indulgence. I can't do anything for Dad right now, but I can make sure Mum's tucked in properly and Little Ted hasn't slipped from her grasp. He has an important job to do; keeping her safe while I chase some of that elusive sleep.
Thanks to anyone who made it this far... I appear to have combined a year's words into one post. And best wishes to everyone out there going through similar problems. We are not the first. We won't, sadly, be the last.
But I need to vent somewhere now, before I crack, and who else is going to understand the tortures dementia puts us through?
My mother's ongoing decline has been hard, but expected. We no longer go out for walks; I just help her hobble between bed and loo, loo and chair, chair and loo, loo and bed. Where this time last year we were getting back towards a mile a day after her broken leg, as the year drew on and the days got shorter, so did our walks. As the light faded, so did Mum's balance. And by Christmas she was housebound. Soon she will be bedbound.
We have a wheelchair now, and I used it to get Mum to a rather pokey and more crowded than I hoped vaccination centre last Saturday, so when the weather improves we will get out. But the less you use your body, the faster your body falls apart. It is the next phase of decay and it is... a challenge, mentally and physically.
We go on though. Because that's what you do.
Meanwhile, my father's health has declined. I made him promise not to get ill until I'd finished helping Mum on her journey, but... parents, nothing but trouble! They divorced a very long time ago and Dad was always a relatively distant part of my life, especially as he became part of a new family 20 miles away from Mum.
But Mum's decline brought us closer together. Partly because I was back up this end of the country. Partly because he was increasingly my biggest connection to Mum's evaporating past. And partly because it felt like his 'new' family weren't really keeping an eye on how he lived and aged when he wasn't with them. He was slipping towards some kind of mental decline too. But slowly, thankfully.
However last year he developed a mystery heart condition which stopped his walks and slowly dragged him down. I hoped maybe he'd had mild covid and this was a long covid type thing. But it wasn't and as his deafness also worsened, so did my ability to be any use to him whatsoever on the phone. I saw him just before the first lockdown, but then -- like so many -- I started taking shielding Mum very seriously indeed to avoid her dying alone in hospital. I've even paid our carer to stay away 'on call' for most of the year, because she has multiple clients (when they weren't scared, too) and a life of sorts. Even with the best of care and intentions, she was the most likely way covid would get through my care home-like paranoia.
So it was phone contact only with Dad. I should point out though that my brother stepped up well to help Dad, and my sister was able to do a little too. But neither could spend the kind of time he needed, and both live a lot further away. So, inevitably, Dad's decline eventually ended up with him hospitalised in early January. At first for a few days, then a few weeks as they struggled to control his problems. Then it started to look like it might be terminal.
And then covid caught up with him, earlier this week. He's now on 1-1 care, with some days more lucid than others, and they're trying to discharge him to a care home of some kind to, well... die, so they can try to save someone with a chance of surviving. I'm not up entirely sure what's going on and it's my brother who's dealing with it all as the main contact. He's even been in to visit, given full PPE because Dad's dying.
And I could go too.
This -- finally I get to the point -- is the reason I'm typing. I'm only an hour and a half away by train & walking to avoid any more contact than necessary. But no matter how hard my heart tells me I need to see him, and no matter how the nursing staff assure me I'll be safe, my head insists I can't spend time in a covid ward and risk bringing it home. Mum wouldn't last ten minutes. We're already managing a cough which rattles towards infection regularly. And she has the immune system with all the strength of a wet paper bag!
Of course there's that hard hearted bit of me which says "she wouldn't want to live like this anyway, so surely it's a risk worth taking?" But I've put so much effort into keeping her safe from this bloody virus... probably because I can't protect her from bloody dementia! And my brother's taking the risks so I don't have to. And if I get ill first, who's going to look after her?
Maybe if Dad can hang on a couple more weeks, Mum's first vaccine will have built up her resistance and I can take a more calculated risk. But you only have one day at a time to make choices. And eventually those choices run out.
And sometimes you can just go round and round and round in circles, finding new ways to torture yourself. Dad might have been a lousy husband and parent, but he's still my Dad. And I think part of the light at the end of the tunnel with Mum was the idea that I might find a purpose in life helping him once she's gone. So there's a bit of selfishness going on too, I'm sure. It's an emotional mess, and I don't get enough sleep these days to be coping with emotional mess well!
Anyway, enough self-indulgence. I can't do anything for Dad right now, but I can make sure Mum's tucked in properly and Little Ted hasn't slipped from her grasp. He has an important job to do; keeping her safe while I chase some of that elusive sleep.
Thanks to anyone who made it this far... I appear to have combined a year's words into one post. And best wishes to everyone out there going through similar problems. We are not the first. We won't, sadly, be the last.
