So sadly mum passed away 6 weeks ago from vascular dementia. She like so many l’m reading about, experienced rapid decline during lockdown. From being able to go into town with my dad, go to cafes, meet me for lunch to a shell in 4 months. Fortunately dad was able to keep mum at home and until June cared for her on his own. As her condition deteriorated l managed to convince dad he needed support and amazingly once that call was made, help arrived with in a couple of hours. The carers however noticed mum was dehydrated and quite poorly which turned out to be COVID. She’d got this from a hospital visit a week earlier, prior to this they hadn’t left the house.
So amazingly mum got through COVID and after a 4 week stay in hospital with no contact we got her home, but such a shock as she was now bed bound and barely eating or drinking.
The hardest part was dad got little support from any medical professionals, she was just sent home and he at 84, had to get on with it, with assistance from 3 daily care visits. Any support was all about getting mum better, but clearly she wasn’t going to get any better. Dad tried desperately to get mum to eat and drink, but there was always the question for what purpose, she was clearly in final stages. We realised this was going to be a difficult period.
So then mum stopped drinking. I read and read, trying to find out how long, what are the signs, but as you all know there is no definite time line, just that it will end at some point, which is so so hard. I stayed with my dad during this time and called in my 3 brothers, one of which is a GP. Although good to have mum at home, as a family we were having to make all the decisions about care/help from professionals and l felt so out of control, thankfully my GP brother could make some medical decisions. None of the professionals visiting seemed to acknowledge mum was dying. It was only on the day she died that the district nurse came in and said mum could have what ever drugs we thought she needed. Other professionals had been conservative which l do understand, but difficult when your loved one is suffering in front of you.
The 8 days were awful, a roller coaster of “is today the day”. When we thought she couldn’t get any worse, she did. The groaning, the slowly slipping away into a deeper sleep, the difficulty managing her mucous, moistening her mouth, the sitting around waiting for her to die, the night vigils, the syringe driver beeping as we wait for the district nurse to arrive to administer more drugs, the shallow breathing and then finally the last breath, the body bag and my dad’s pain. So harrowing. Part of me thinks l wish l hadn’t witness the end, or all of the 8 days. One brother arrive 20 hrs before mum died, although l was cross because of the choices he’d made he hadn’t put mum first, now l envy him for not having the intrusive images which now dominate my mind, particularly at night. I feel locked into the images and so so difficult to shift.
I find it really difficult to talk about, but know l need to. I think my husband is fearful of the sadness. When l tried to talk to him he said let’s do this at the weekend, it was Monday! I’m trying to be kind to myself. I run which helps, as does yoga. I can’t hold any info so use lists and set a goal of achieving 2 things a day. My children are thankfully old enough to be helpful, but l feel guilty that l can’t offer much at this time. I know this is going to take time. Dad is doing well, though things have moved quite quickly and the family home is sold (not completed yet) and he has moved to Devon with one of my brothers. This means l can’t seem him more than maybe once a month when l’d been supporting him every weekend.
This has been much longer than l intended but once l started writing it felt good to do and helpful to read back. If anyone has any falling back to sleep tips, l’d appreciate it as really struggling.
Thank you for listening
So amazingly mum got through COVID and after a 4 week stay in hospital with no contact we got her home, but such a shock as she was now bed bound and barely eating or drinking.
The hardest part was dad got little support from any medical professionals, she was just sent home and he at 84, had to get on with it, with assistance from 3 daily care visits. Any support was all about getting mum better, but clearly she wasn’t going to get any better. Dad tried desperately to get mum to eat and drink, but there was always the question for what purpose, she was clearly in final stages. We realised this was going to be a difficult period.
So then mum stopped drinking. I read and read, trying to find out how long, what are the signs, but as you all know there is no definite time line, just that it will end at some point, which is so so hard. I stayed with my dad during this time and called in my 3 brothers, one of which is a GP. Although good to have mum at home, as a family we were having to make all the decisions about care/help from professionals and l felt so out of control, thankfully my GP brother could make some medical decisions. None of the professionals visiting seemed to acknowledge mum was dying. It was only on the day she died that the district nurse came in and said mum could have what ever drugs we thought she needed. Other professionals had been conservative which l do understand, but difficult when your loved one is suffering in front of you.
The 8 days were awful, a roller coaster of “is today the day”. When we thought she couldn’t get any worse, she did. The groaning, the slowly slipping away into a deeper sleep, the difficulty managing her mucous, moistening her mouth, the sitting around waiting for her to die, the night vigils, the syringe driver beeping as we wait for the district nurse to arrive to administer more drugs, the shallow breathing and then finally the last breath, the body bag and my dad’s pain. So harrowing. Part of me thinks l wish l hadn’t witness the end, or all of the 8 days. One brother arrive 20 hrs before mum died, although l was cross because of the choices he’d made he hadn’t put mum first, now l envy him for not having the intrusive images which now dominate my mind, particularly at night. I feel locked into the images and so so difficult to shift.
I find it really difficult to talk about, but know l need to. I think my husband is fearful of the sadness. When l tried to talk to him he said let’s do this at the weekend, it was Monday! I’m trying to be kind to myself. I run which helps, as does yoga. I can’t hold any info so use lists and set a goal of achieving 2 things a day. My children are thankfully old enough to be helpful, but l feel guilty that l can’t offer much at this time. I know this is going to take time. Dad is doing well, though things have moved quite quickly and the family home is sold (not completed yet) and he has moved to Devon with one of my brothers. This means l can’t seem him more than maybe once a month when l’d been supporting him every weekend.
This has been much longer than l intended but once l started writing it felt good to do and helpful to read back. If anyone has any falling back to sleep tips, l’d appreciate it as really struggling.
Thank you for listening