For about 10 days my Mum ate practically nothing and drank little. She has been in NH for 3 years and had dementia for 12 diagnosed at 68, so this non-eating felt like the final stage. The worst thing is the change to her not reacting in any way to my visiting. It’s like she’s now a hollow shell. We were told that it would only be weeks now. Then today when I rang on my way home from work, the staff said she had eaten a few spoons of porridge and yoghurt. I have such conflicting views on this. I don’t want her to suffer for longer, and I’m worried she’ll get aspiration pneumonia, but obviously I also hoped this meant she may be better again and come back to me a little. I raced over to the home hoping that Mum might be there again with a smile or a hug, but was devastated to see that still vacant stare. I just crumpled and couldn’t stay as I was so upset. I have such a confusing mix of emotions right now. Can anyone relate to similar feelings at this time with their loved one?
So confused by my Mums changing condition
- Thread starter Luckylisa
- Start date
Hi luckylisa
I’m at the same point this week
Last week Monday Mum began refusing food drink and meds. On Tuesday she was practically choking on phlegm. Me my brother and sister take turns to care for Mum at home. We honestly thought she wouldn’t last the week. Called doc out and he said she’s got a chest infection. Yesterday and today she managed a few spoons of food. We’ve started using water thickners so she can swallow water. And pants as she can’t stand to go use the toilet.
I don’t know where I am. Some days she sleeps all day and night and then tonight, she wouldn’t go to bed and is currently crying really loud. She’s so distressed and won’t let me near her to calm her down.
You have to take each day as it comes. It’s such a cruel disease. I accepted that I lost my mum nearly three years ago. She’s here but she’s not, if you know what I mean.
My mum is currently in final stages with a pump driver, however I feel I am still riding the terrible rollercoaster which is dementia. It seems this awful disease as a will of its own and refuses to relinquish the sufferer. Friday we thought the end had come, from Saturday she gradually improved, Monday she seemed much improved and Tuesday she sharply declined again. When I left late Tuesday evening once again she seems to have slightly improved.
The emotions involved in these peaks and trough changes are something else - I truly feel for you xx
Yes I can certainly relate to those feelings.
Those last 3 years every single visit was torture for me. Visiting my mother was, as I compared it to was like visiting a grave. the body was laid out on top, but the 'person' had no capacity to respond and so it was like talking to a gravestone. Some visits wer under 10 minutes because it stressed me out so much.
You know, Mum struggled with her swallowing and we had to start her on water thickners but about a week later and she could sort of swallow normal water again.
Is this normal?
When doc came for home visit and said she’d got a chest infection, he also said that there wasn’t much more that could deteriorate in her condition. Can’t stand, walk, in pants, needs feeding the few mouthfuls of food, mostly refusing food. He basically said Mum had entered the final stages
But then her swallowing ability sort of came back.
Is this normal, is Mum getting better?
Will she stand and shuffle again?
Is this normal?
When doc came for home visit and said she’d got a chest infection, he also said that there wasn’t much more that could deteriorate in her condition. Can’t stand, walk, in pants, needs feeding the few mouthfuls of food, mostly refusing food. He basically said Mum had entered the final stages
But then her swallowing ability sort of came back.
Is this normal, is Mum getting better?
Will she stand and shuffle again?
Oh gosh..you text sound like mine..its been nearly 8 weeks with my mum...every day is so so different and more heart breaking. We have priest out to mum 5 weeks ago..and low and behold she still her..we actually i think 12 days with no food..but she bouncy back ..now eating a few mouth fulls..i have learned take every day as it comes ..as dementia as no rules or guide lines !!!..thinking off you as i know how you are feeling!!..xxc
Most GPs don't have enough experience of late stages because so few sufferers reach those stages, but believe me there's quite a lot of deterioration possible still
my Mum went up and down like a yo-yo during those last 3 years, when she was basically considered 'end-stage'. Basically bedbound, unable even to shift position herself, unable to understand the simplest of instructions, communicate verbally and often not even non-verbally, even needed 'manipulation' to be able to swallow . . . .
Hence the often quoted roller-coaster analogy.
We had 19 emergencies when 'the end was expected' during her last 18 months and each time she managed to 'recover' and 'fight back' to stay alive, though never recovered abilities and still needed absolutely everything being done for her and anticipated,I am on this roller coaster with my Mum
Just as you think you cannot take anymore, you have to, goodness knows they must feel so dreadful.
It is strange but I did not feel comfortable with the competency of those surrounding my Mum with regards to end of life but did not understand fully why, apart from the fact that she nearly died and the experience was shocking with regard to the CH and GP
They really did not explain fully the circumstances but it seemed they did not know either.
Just as you think you cannot take anymore, you have to, goodness knows they must feel so dreadful.
It is strange but I did not feel comfortable with the competency of those surrounding my Mum with regards to end of life but did not understand fully why, apart from the fact that she nearly died and the experience was shocking with regard to the CH and GP
They really did not explain fully the circumstances but it seemed they did not know either.
I don't like it either, hun. Mil is now on palliative care, the staff at her nursng home, doctors and consultants, all talking in terms of just weeks. We can see how frail she is, how awful her skin tone is, how she is physically failing, every time we visit. We have times where she is just sleeping for hours and hours. There are times when she is awake, but not wanting to eat or drink, and unable/unwilling to engage with us. When we see her like that, like you, we think 'this is it, she is dying, its going to be soon'. Then we go in the next day and she is rolling around on bean bags and crash mats in her room, because a condition she has called Tardive Dyskinesia is causing horrific jerks, spasms and constant movement, and she can't sit in a chair or lie in a bed without writhing and wriggling her way to the floor. Its hard for her to eat or drink, without choking, she often vomits and she is visable exhausted but unable to sleep because of the involuntary and constant need to writhe and jerk. Thats when you start praying that it won't be long, because its so horrible to see and God only knows what its like for her to be going through it. Then, the day after that, you may find her sitting in a chair, the compulsive movements either reduced to barely anything or not even evident at all, she is alert and often extremely aggressive, seeming to have the strength of an ox and - on odd occasions when she is determined to go for someone at the other side of the room - she can get up from the chair, despite normally needing 2 people to support her to walk - and be across the room like flipping Hussain Bolt.
We go from thinking hours or days at most, to actually hoping it will only be hours or days at most, to thinking she'll out last us all, literally from day to day. Its so exhausting and draining for us, our emotions are constantly confused, and everytime the phone rings and the homes number comes up, our hearts go into overdrive, not knowing what the latest will be.
As you say, just how cruel can this illness get xxxx
I do feel for you - I thought mum had reached the end last week, then she rallied and now back to constant sleeping. I don't know about you but I wake every day filled with dread. How your words "think you cannot take anymore, have too" resonate with me. We push ourselves so hard don't we? I sit with my precious mum thinking "what is going on inside your head?" and praying it's not something upsetting. I suspect the recent distressing event with your mum has shaken you so badly and that this is causing you to feel discomfort with the CH and GP. You haven't elaborated what occurred and I don't want to ask you to if this is too distressing and insensitive but feeling the CH and GP didn't understand the circumstances is bound to make you feel uncomfortable. Were you present when this happened? Would it be possible for you to request a meeting with the GP or the CH staff involved, ask if they can discuss what happened and say how much this has upset you? End of life care must be something they deal with all the time, but I suspect even so things happen which are different and not the "norm" - if there is a "norm" with this wretched disease. It might also be helpful to go over your mum's end of life care plan with the CH. I am so sorry this has happened and that it has shaken your confidence in the CH and GP. I think it needs further clarification to, hopefully, restore your faith in those caring for your precious mum. Please let us know how things progress. Thinking of you x
I can relate to this too, Luckylisa. My Dad has end stage Parkinson's Dementia, and is much as you describe your Mum, but in hospital. His mind has really gone now, he doesn't acknowledge me at all when I visit. He might grimace if I talk, which is nothing like he was before. He's lost almost all fat and muscle. We're currently in the fourth episode of thinking he's about to die - the nurses have advised us not to go anywhere in the next few days. But... the same thing happened two months ago, and then he appeared to recover, which was awful in itself as at best, he's going to be severely disabled. So we're presented with two awful outcomes, severe disablity with no quality of life and possibly quite a lot of pain, or death. It's just so bleak.
Just returned from visiting mum. She was a little more alert but as usual calling out her own name. I was just getting her a drink when she said "Mine eyes have seen the glory of the coming of the lord". Well that one threw me completely and of course -typically for me - I'm thinking is this a sign that the end is near? She didn't say it again. I can't get it out of my head though - mum's brother, who also succumbed to this dreadful illness kept saying he could see Jesus just before he died. Oh well, must start the ironing, put the radio on and hope The Battle Hymn of The Republic is not on today's playlist!! x
xhello @Poudrenez
a warm welcome to TP
so sorry to hear of the situation with your dad, the poor man - so tough on everyone
no wonder you feel it's so bleak
I hope posting here and sharing your experience will be of some help, and maybe comfort, to you
a warm welcome to TP
so sorry to hear of the situation with your dad, the poor man - so tough on everyone
no wonder you feel it's so bleak
I hope posting here and sharing your experience will be of some help, and maybe comfort, to you
The comment 'just as you think you cannot take anymore, you have to' resonates with me too, as does the expression 'emotional rollercoaster'. I'd got used to mum sleeping in the morning and after lunch, then being awake late afternoon and evening. Now she's making involuntary movements, I think when she's asleep, but sometimes she does a really big jerk - I think she feels as though she's falling - so I'm on tenterhooks and sometimes jumping out of my skin. And earlier this afternoon she called me to come quickly. I went rushing in and she was talking about making things look tidy. Feeling stressed and tired, then I feel guilty, of course.
Most GPs don't have enough experience of late stages because so few sufferers reach those stages, but believe me there's quite a lot of deterioration possible still
my Mum went up and down like a yo-yo during those last 3 years, when she was basically considered 'end-stage'. Basically bedbound, unable even to shift position herself, unable to understand the simplest of instructions, communicate verbally and often not even non-verbally, even needed 'manipulation' to be able to swallow . . . .
Hence the often quoted roller-coaster analogy.
WOW! just how much more can a person take? carer and sufferer, it was like someone or something was playing a very sadistic game up there. I am anxious of what is to come. Still many years yet in our future, I think, but just so dreadful to face this kind of future. God help us
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