I saw someone else posting through end stages as a kind of catharsis, so I thought I might try something similar - forgive the long opening post, but any comments or advice welcomed!
Mum is 82, has had Alzheimer's for 3 years, and had to be moved into full time residential care (self funded) at New Year owing to increasing wandering and falls.
Her mobility was declining very quickly - in July 2019 she was still cycling to the shops (when she could remember how to find them), by January 2020 she could barely use a walking frame - and understandably there was a massive increase in her confusion after the move. She stopped reading, stopped recognising me as her daughter (she recognises my face as family but thinks I'm her sister, circa 1955), and although hilarious and charismatic she started being very insulting towards the carers! She chatters, all nonsense, but tires quickly. She also had more and more falls at the home - she gets up, moves off without her walker and topples after a couple of steps. So far she hasn't hurt herself badly.
Then 9 days ago, the home felt she hadn't been herself, her sugars were high (she has type 2 diabetes) and they were treating her with antibiotics for a UTI. She was so unbalanced that they tried to hoist her, and she had a sudden collapse. She was rushed in to hospital unconscious and unresponsive, with blood sugars off the scale and shallow, ragged breathing.
She was found to be septic, in full urinary retention and upon catheterisation her bladder was - sorry to be graphic - full of pus. Her oxygen stats plummeted and her heart was racing.
They stabilised her but over the first couple of days she remained unresponsive and reliant on oxygen and they warned me to expect the worst. They suspected a blood clot but she wasn't even well enough to put through a CT scan. There is a DNAR in place, so they confirmed they would not take her to ICU or ventilate her if she deteriorated further - they would simply withdraw and allow nature to take its course.
I know that mum would be fine with that, it's absolutely what she would want - no more interventions and the opportunity to bow out gracefully, and of course I support her 100%. We talked about it when she set up the POAs in 2016, so I agreed that they should move to palliative care if she was still unresponsive over the next 48 hours.
But somehow, she rallied. On the 3rd day she opened her eyes, responded to voices and was able to follow some instructions. She went for a CT scan and they found multiple, bilateral and huge blood clots on her lungs, with "backflow" of blood putting pressure on her heart.
Over the next couple of days, with proactive medication her oxygen sats improved, sugars came down, infection markers came down and heart rate normalised. 9 days since admission she is off all oxygen, off the insulin infusion, and her antibiotics finished yesterday. Blood thinners are now administered as tablets. But she also has no sitting balance, is unable to speak clearly but can mumble short sentences, is eating and drinking very little so is still on fluids, and sleeps all the time unless woken for medication.
It sounds odd and probably heartless, but I'm devastated for her. She's been fed up and wanting to die - despite generally being a very sunny and positive person - for over a year, and I really thought she'd finally got her wish and could drift away to go be with her sisters and my stepdad again.
But no. It seems that she is going to have to face being discharged back to the care home to be nursed, fed, hoisted, bathed, and all the other indignities she absolutely couldn't bear the thought of.
She's got another 5-7 days in hospital to watch for those infection markers, and to see if her eating and drinking improves, and then we'll have to talk about a future care plan - I've already said she wouldn't want to keep coming back to hospital for repeated infections.
I always prayed for a swift and dignified end for her, and I'm so sad she's not going to get it. Yet it feels horribly wrong to be hoping she will slip away!
Mum is 82, has had Alzheimer's for 3 years, and had to be moved into full time residential care (self funded) at New Year owing to increasing wandering and falls.
Her mobility was declining very quickly - in July 2019 she was still cycling to the shops (when she could remember how to find them), by January 2020 she could barely use a walking frame - and understandably there was a massive increase in her confusion after the move. She stopped reading, stopped recognising me as her daughter (she recognises my face as family but thinks I'm her sister, circa 1955), and although hilarious and charismatic she started being very insulting towards the carers! She chatters, all nonsense, but tires quickly. She also had more and more falls at the home - she gets up, moves off without her walker and topples after a couple of steps. So far she hasn't hurt herself badly.
Then 9 days ago, the home felt she hadn't been herself, her sugars were high (she has type 2 diabetes) and they were treating her with antibiotics for a UTI. She was so unbalanced that they tried to hoist her, and she had a sudden collapse. She was rushed in to hospital unconscious and unresponsive, with blood sugars off the scale and shallow, ragged breathing.
She was found to be septic, in full urinary retention and upon catheterisation her bladder was - sorry to be graphic - full of pus. Her oxygen stats plummeted and her heart was racing.
They stabilised her but over the first couple of days she remained unresponsive and reliant on oxygen and they warned me to expect the worst. They suspected a blood clot but she wasn't even well enough to put through a CT scan. There is a DNAR in place, so they confirmed they would not take her to ICU or ventilate her if she deteriorated further - they would simply withdraw and allow nature to take its course.
I know that mum would be fine with that, it's absolutely what she would want - no more interventions and the opportunity to bow out gracefully, and of course I support her 100%. We talked about it when she set up the POAs in 2016, so I agreed that they should move to palliative care if she was still unresponsive over the next 48 hours.
But somehow, she rallied. On the 3rd day she opened her eyes, responded to voices and was able to follow some instructions. She went for a CT scan and they found multiple, bilateral and huge blood clots on her lungs, with "backflow" of blood putting pressure on her heart.
Over the next couple of days, with proactive medication her oxygen sats improved, sugars came down, infection markers came down and heart rate normalised. 9 days since admission she is off all oxygen, off the insulin infusion, and her antibiotics finished yesterday. Blood thinners are now administered as tablets. But she also has no sitting balance, is unable to speak clearly but can mumble short sentences, is eating and drinking very little so is still on fluids, and sleeps all the time unless woken for medication.
It sounds odd and probably heartless, but I'm devastated for her. She's been fed up and wanting to die - despite generally being a very sunny and positive person - for over a year, and I really thought she'd finally got her wish and could drift away to go be with her sisters and my stepdad again.
But no. It seems that she is going to have to face being discharged back to the care home to be nursed, fed, hoisted, bathed, and all the other indignities she absolutely couldn't bear the thought of.
She's got another 5-7 days in hospital to watch for those infection markers, and to see if her eating and drinking improves, and then we'll have to talk about a future care plan - I've already said she wouldn't want to keep coming back to hospital for repeated infections.
I always prayed for a swift and dignified end for her, and I'm so sad she's not going to get it. Yet it feels horribly wrong to be hoping she will slip away!