Hoping that we're nearing the end?

[Subo72]

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!

 

[Izzy]

I’m so sorry to read about your mum’s situation. It’s really heartbreaking. I don’t think it’s wrong to hope that she will slip away and I’m sure many members have thought in the same way about their own loved ones.

I hope it has helped to put your thoughts down here. As you know there is always someone her to listen and support. Thinking of you and wishing you strength.

 

[canary]

Im so sorry to hear about your mum. I remember when mum got to this stage she was sent back to the care home and passed away there - which was, by far, the best outcome
Im glad your mum has a DNR, but if she returns to her care home you might want to talk to the care home GP about what happens if your mum is unwell again. I talked to mums care home GP and we were in agreement that no ambulance would be called and mum would not go back to hospital, but be kept pain free and allowed to pass away naturally. She was placed on paliative care a week later and passed away two weeks after that.
xxx

 

[lemonbalm]

It's not at all wrong to pray for a swift and dignified end for those we love It's the best any of us can hope for. I confess I have wished for mum to slip away peacefully on a happy day countless times over the past few years. I'm still wishing. You have nothing to feel bad about.

 

[LynneMcV]

Hi @Subo72 - you've really been put through the mill emotionally haven't you...

It's not wrong to have hoped for a peaceful end while your mum was in hospital so please do not let the guilt take over.

I am glad you had the chance to talk through your mother's wishes at an earlier stage when the POAs were prepared. I found that really helpful when my husband was at his end stages because, although I knew what his wishes were, it did help to also have it in writing if I started to have a wobble along the way.

I think the advice to talk to your mum's care home/GP about how things are best handled going forward is going to be the best option.

Thinking of you and your mum.

 

[Subo72]

Thanks for your comments, much appreciated - it's nice to have somewhere to vent, where people understand. In fact I don't know why I didn't think of it before - I've been a member for a while, but I think I've stayed away, because many of the stories and situations are just too sad to comprehend. I don't know how people cope caring for a family member with dementia at home, you're all angels! Mum was also very specific in her wish for me never to become her carer - I sorted out a few "code browns" ? during the spell where she kept falling in the bathroom when she was still at home, but we both pretended those incidents never happened! Well ok...she forgot and I blanked them out.

I've been reading some other end stage stories and it horrifies me that she could continue in this condition for months, so (again slightly weirdly) your post gave me some hope Canary (apologies don't know how to quote or tag yet). I hate to think of her wasting away for another year, unable to talk or move, but it's a cruel disease. I guess I should be thankful that, if she does have a few more weeks, at least lockdown may be eased so I'll get an opportunity to see her and say my goodbyes and tell her what a wonderful mum she was, and how much she is loved.

I have been relatively dry eyed since she was admitted - I had a mini meltdown when I tried to speak to her on the phone and she sounded distressed, and again when my brother (who is overseas) told me kindly that mum would be proud of me! But I think I still have my stoic and practical head on, because that's what she would expect of me. No histrionics, buck up and get on with it, she'd say. But then she'd pat my hand and her nostrils would go all flary, which happens when she's trying not to be emotional.

I'm saving my breakdown for when I've seen her through to the end, and only then can I afford to think about what a beautiful, sassy, witty, elegant, clever and loving person she was. She deserves a dignified finish, come on mum.

 

[Bunpoots]

Hi @Subo72 . I remember when my dad was nearing the end and things all started to go wrong. I remember feeling just like you and even though I didn’t want to let him go I was still wishing for a quick finish. In the end that was what he got - what he always said he wanted.
Goodbyes are never easy but I hope your mum gets a good one.

with regard to tagging you just use @ followed by the name of the person (no space) and a box will appear under the name. Just click on the right name.

To quote just click on the box bottom right of the post you wish to quote which says reply.

 

[Banjomansmate]

I was thankful that The Banjoman’s solicitor suggested he make an Advance Directive when we were arranging his LPAs. As things got difficult near the end I was able to produce the AD for his Care Home, hospital and GP.
When he deteriorated after falling and breaking his femur, then had another couple of falls and further deterioration, after reading the AD the Dr. in A&E stated that unless he suffered a major injury he should not be sent to hospital again. The Care Home manager agreed and after discussion with the GP we were all in agreement that his quality of life was such that the Advance Directive should come into play. He took a down turn a couple of weeks later and was allowed to slip peacefully away.
In the months following the broken femur, as I watched him fall apart both mentally and physically, I wished for his distress to end. The slightest touch had him yelling as though he was in agony and he reacted violently to carers trying to move him or care for him. It was a relief when the end came peacefully. I wasn’t with him, I had said my “Goodbye” a few days earlier, whether he was aware of my presence I have no idea, although awake he seemed oblivious to everything.
We wish our loved ones did not have to die but sadly there comes a time when we know it is the kindest thing that could happen to them.

 

[Subo72]

Thanks for the tips on quoting and tagging!

I haven't been able to get through to the hospital today for an update, but if there was any change I guess they would have called me. I'll keep trying.

I did call mum's care home, just to check what capacity they had and what sort of needs they could handle on the nursing floor, and they reminded me that if mum is being discharged from hospital with complex needs, she should qualify for NHS continuing health care.

I wouldn't even know where to begin, getting a financial assessment from the local authority was hard enough. I have read about CHC, but the NHS website is quite broad and just talks about assessments a lot. Does anyone have any experience of it? How do you start the process, is it triggered by the hospital?

 

[Louise7]

CHC assessments are currently suspended due to the Covid-19 situation however those at end of life may still be entitled to a CHC fast track assessment - speak to the hospital about this. Under the emergency procedures NHS funding may be available for those leaving hospital and the document below explains about the various discharge processes (a lengthy read though!):

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/880288/COVID-19_hospital_discharge_service_requirements.pdf

 

[Subo72]

Oh that's helpful, thanks @Louise7!

Well, the doctor was pretty short with me this afternoon - I get it, they're busy and I call every day to ask questions so maybe they think I'm a PITA. But I'm always polite - apart from perhaps day 2, when I got annoyed that one doctor said she was confused and"out of sorts" due to the UTI, and I said rather sarcastically that it was more likely to be due to the advanced Alzheimer's. I just felt frustrated that they didn't seem to know, and I'd explained it and its right there in front of them in the notes. I didn't mean to sound snarky but that doctor has not come back on the phone to me since, it's always one of the others even if she's the one whose seen mum today!

This was one of the others, pleasant but quite abrupt and in a hurry. So I got very little information other than that there are slight improvements, I wasn't given the chance to ask anything because she quickly said that mum was brighter and talking so did I want to try and speak to her.

Well, she didn't sound bright to me. Her voice sounded weak and slow and she could barely form words, she was so drowsy. She repeated my name though, which was great - hopefully she remembered me in that moment. I chattered a little bit but she couldn't hold the phone up for more than 30 seconds (doctor said she held it for her), and after initially forming a few words (mostly just acknowledgement noises) her voice was indistinct. But I did manage to say keep drinking mum, the more you can sip the sooner you can get out of there - and I said I love you and can't wait to see you, and she managed to murmur "I love you too darling" before she sort of sighed and went silent.

I suppose realistically they can't discharge her back to the home until she's drinking can they? As they can't administer IV fluids there.

 

[Subo72]

Bland update...mum is still eating and drinking very little, although she will with persistent encouragement. She's still in hospital as she is still needing IV fluids - but there is talk of discharging her back to the care home next week (if they can accommodate her higher needs on the nursing floor), with a view to the home assessing her for CHC "out in the community" once she's been given time to regain some strength after the infection.

The consultants tell me that her "base line" is well off, which I assume refers to her poor balance, and she can no longer sit unsupported. She can form a few words but tires easily, and has difficulty following instructions from the physio.

I don't really know if they are referring to her needs as "end of life care" now, but I suppose I'll find out when I talk to the discharge team about her future care plan.

 

[Toony Oony]

Hi @Subo72 - just had a quick read through of your thread, and wanted to give you a virtual hug and say 'Hang on in there'. Your latest post really banged home to me how difficult this must be for you and those in similar positions at the current time, who are having to rely on the appraisals of busy doctors to say how their loved ones are, rather than being able to see them and make those gut feeling assessments for themselves.

I read your thread as I am a kindred spirit in terms of wanting Mum's end of life to be quick and peaceful. Every night I prayed that it would be quick and painfree - not for me, as I would have gone through anything on Mum's behalf - but for Mum herself. Sadly but thankfully, that's what happened in February. There were several occasions over the last 6 months of Mum's life when I thought 'This is it' - but each time she rallied, but was worst than before. At the end it was all over in 3 short days. Mum was 'out of it' and didn't appear to know anyone or what was happening. I had a DNR in place and the CH were outstanding in their love and care for Mum over those 72 hours. I was told that if the DNR had not been in place, Mum would have been taken to hospital immediately - I doubt it would have achieved anything other than perhaps a few more hours of life, that's if she actually survived the ambulance journey.
I am 100% certain that my decision was the right one - not only the DNR but the hope that it would all be over quickly and Mum would no longer have to live a life of very little quality and suffer the indignities of the disease that made her hate the person she had become.
Due to Mum's condition, there were no final words shared, and no loving messages. I talked to her and sang to her. As far as I was concerned, this was the last, loving thing I could do for her - to let her slip away, painlessly in her own bed with just the smells and sounds of the CH that she had become accustomed to.

My thoughts and prayers are with you both X

 

[Subo72]

Thank you so much @Toony Oony, your lovely post made me quite emotional! I haven't been able to get through to the hospital for a couple of days, it just rings and rings.

I sincerely hope this doesn't drag on too long for mum - she's clearly not ready to go just yet, but I know for certain that she will hate being nursed in bed.

I don't want her to suffer or have a moment's more misery and discomfort than is necessary. I will miss her, but then I've missed the old mum for nearly a year already.

I hope, now that she has decided to stay for a bit longer, that I do get a chance to go and sit with her, and chat nonsense to her and maybe read to her.

 

[Billy55]

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!

To
Subo72
My mum died this month 2nd of may from getting a infection brought her dementia to the last stage quickly she was in hospital for four weeks they got rid of the infection but it brought the dementia on even worse they brought her home with their bed and they put in place end of life care it broke my heart knowing she was going to die on me my mum never knew who I was she thought I was her husband even before she went into hospital but the last two weeks of her life I video her smiling and laughing she was like a child every time I walk in to see her she always had a beautiful smile when she seen me ,me and my wife son and daughter look after her on Saturday the 2nd my mums breathing was bad rattling her eyes were open no motion in them we got the nurses out at 3.45 pm my mum died aged 77. Its been a week now am still crying over her I to wish for a peaceful death to she will have one because my mother breathing went bad the nurses said she not suffering only us who were watching her die was. What ever you do when your mums dying is talk to her about the Good times you had with her, hug her tell her how much you love her.

 

[Cat27]

Welcome to DTP @Billy55
I’m so sorry to read about your mum. Please keep posting as you’ll get lots of support here.