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Is this the beginning of the end?

Timeout

Registered User
Feb 10, 2012
204
So many of us in the same position, love to you all, it's so difficult. Jjude its been a learning curve for me too. Nitram was very helpful in explaining that the just in case pack is there for the CH to use to administer drugs for agitation and to dry up secretions at end of life. It will save them having to call out a doctor out of hours or when you need them quickly.
The difficulty I have is that we haven't been told whether mum is quite at that point yet. The nurse at the CH says in her opinion she would be eligible for CHC funding for end of life now but as for getting a just in case pack ready, now that mum has been rehydrated and she's not actively dying as I suspect she was last week then I don't think they think it's necessary.
The hospital doctor we saw on the 23rd, a day before she was discharged was very helpful in explaining that mum wouldn't be re admitted if it happened again and that in his opinion it was better for mum to be discharged back to her CH where she wasn't at risk of infection. He was only a young lad, in his 20's I guess but he was passionate about his job as a geriatrician. He said his gold standard of care was based on what he would do for HIS mum. If it wasn't good enough for his mum then it wasn't good enough for anyone else's either. He said all we can do is give her the most comfortable and dignified ending that we can and in his opinion that wouldn't happen in hospital with tubes and machines dragging things out.
He was marvellous, he made it all make sense, even though it was one of the most painful conversations ive ever had.
 

Timeout

Registered User
Feb 10, 2012
204
Just an update, well, mum seems to have found another stage, lower than she was before but stable at present.

She's fully bed bound now, hoisted, doubly incontinent and is eating very little but drinking well. Some days it's thickened drinks, some days she is managing lemonade and juices.

She is back to her previously smiley self and can say about 6 words in total but only ever one at a time, never a sentence.

She seems happy, comfortable, warm and clean so that all we can ask for. She will follow you around the room with her eyes but is finding it hard to raise her hands up to her face now (she's very shaky). Due to this she needs feeding as cannot coordinate a drink or food to her mouth.

I don't know how long we'll have her for like this but will make every we time we see her as happy as possible.
 

Ameliasmama

Registered User
Oct 24, 2015
44
I'm glad she is more happy and comfortable, the hardest part for me was seeing my Dad uncomfortable but unable to communicate why.

Sending you lots of love xxx


Sent from my iPad using Talking Point
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
As you suggest 'happy, comfortable, warm and clean' is all that any of us could hope for in these circumstances. I wish you continuing strength.
 

Timeout

Registered User
Feb 10, 2012
204
Still here....

Well, we are still here. Mum is the same, seems to have found a plateau again. She's bedbound, very quiet and peaceful, doesn't speak at all now. Just tucked up on her air mattress staring into space.

Can manage to drink from a beaker and eat some sweet desserts when hand fed - she's just like a baby when you offer she sucks on the end of the spout or the spoon. I keep thinking how boring it must be for her as she doesn't take any interest in television, she can't speak properly or interact with anyone or anything but I guess time means nothing to her.

I suppose its just a matter of time before the effects of being bedbound start taking their toll. I was so hoping she would never have reached this end stage.
 

CJinUSA

Registered User
Jan 20, 2014
1,121
eastern USA
Well, we are still here. Mum is the same, seems to have found a plateau again. She's bedbound, very quiet and peaceful, doesn't speak at all now. Just tucked up on her air mattress staring into space.

Can manage to drink from a beaker and eat some sweet desserts when hand fed - she's just like a baby when you offer she sucks on the end of the spout or the spoon. I keep thinking how boring it must be for her as she doesn't take any interest in television, she can't speak properly or interact with anyone or anything but I guess time means nothing to her.

I suppose its just a matter of time before the effects of being bedbound start taking their toll. I was so hoping she would never have reached this end stage.
Thanks for updating. I've been watching your thread with interest. My mother is not at this stage and might not be for awhile yet, but she is getting there. I so hope it doesn't go on so long. My heart goes out to you and to her.
 

Timeout

Registered User
Feb 10, 2012
204
I'm bumping this thread as I've not updated in a while. Amazingly 2 years after she was put on 'end of life care' and all her meds were withdrawn mum is STILL with us. She is hoisted into a chair daily in the lounge, can drink fluids fine and eats a soft diet.loves her food and eats everything she's given. She can't say any words and is totally dependent on the careers for everything but on and on she goes. After 12 years with Alzheimer's, 6 of those in care I just can't see any end in sight. I think she'll outlive us all...☺
 

lemonjuice

Registered User
Jun 15, 2016
1,534
England
I'm bumping this thread as I've not updated in a while. Amazingly 2 years after she was put on 'end of life care' and all her meds were withdrawn mum is STILL with us. She is hoisted into a chair daily in the lounge, can drink fluids fine and eats a soft diet.loves her food and eats everything she's given. She can't say any words and is totally dependent on the careers for everything but on and on she goes. After 12 years with Alzheimer's, 6 of those in care I just can't see any end in sight. I think she'll outlive us all...☺
I could have written this post myself. My mother was 'on end-of-life care for the last 3-4 years of her life and we had so many 'near misses' over that time period.
I also used to say she would probably outlive my husband and I, especially when she started some 'Cheynes-Strokes breathing, recovered and went on for another 5 weeks.o_O
 

Timeout

Registered User
Feb 10, 2012
204
Well, another year has passed and I’m bumping this thread again. Mum is still here, amazingly! She’s now fully bedbound, still eating a good, soft diet and drinking well. She’s had episodes of illness, UTI’s and some skin breakdown but on she battles. The skin on her legs and arms are affected by red splotches and sores and sometimes they break open. She spends her days mostly sleeping, finds any sort of interaction exhausting and will fall back to sleep if you disturb her. She grinds her teeth a lot and is on a Butrans patch for suspected pain.

I’ve read somewhere that the very end stage can go on for around 40% of the duration of the illness, we’ve been here for around 2-3 years already, she’s been diagnosed 11 years and showed signs around two years before that. I suspect that maybe there are a few years to go yet, her quality of life is now zero apart from eating. I feel so sad that she’s gone to the very end of this vile disease and there may be more to come.
 

KathrynAnne

Registered User
Jun 6, 2018
270
South Yorkshire
My Mum has now bed bound for about 4 weeks. I can’t imagine her still being here for years to come but your Mum is living proof that this happens! Each morning I wonder if she will still be breathing when I go into her room and I have a mixture of relief that she is and sadness that she hasn’t died peacefully in her sleep.
The only difference is that Mum’s eating and drinking is very limited. I’ve tried rice pudding and soup so far today and both have been refused. She has only had half a beaker of orange juice. As you say, quality of life is more or less zero. It is heartbreaking to watch xx
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,501
Nottinghamshire
Thinking of you having to go through this stage. I did with my mum and it was heartbreaking and frightening for me. She gradually stopped eating and drinking and became bed bound. I'm thankful the stage only lasted a few weeks.
 

Muggles

New member
Jan 20, 2019
9
It's called 'just in case' precisely because it's kept ready in case it is needed.

Downturns can be very swift. Drowsiness and reluctance may be a sign that EOL is near, being told that 'she should be kept comfortable and keep offing fluid and food' I would interpret that it is on the horizon.

I refused to allow my wife to be discharged from hospital unless the anticipatory pack accompanied her, they obtained it on a Sunday afternoon, she lasted 3 months mostly in a coma, I was always glad that it was there 24/7. When the death rattle started I asked them to start using the syringe driver, she lasted 3 comfortable and pain free days.

I appreciate that you don't want it to happen but when it does I'm sure you want it to be as peaceful to both your mum and you as possible.

I am a firm believer in having the pack available 24/7.
Hi, my mum has FTD, what is the just in case pack? I’ve not heard of this..
 

canary

Registered User
Feb 25, 2014
12,562
South coast
Hi, my mum has FTD, what is the just in case pack? I’ve not heard of this..
A Just in Case pack is something that is used at the end of life if they are not in hospital. It contains all the drugs - painkillers and something to dry up secretions - that will be needed to make sure that their death is comfortable and peaceful. Once the end is considered to be imminent then a doctor (usually the GP) will prescribe it and it can be kept at their home until needed. Its to make sure that they dont have to wait for a doctor to prescribe the drugs and they are there on hand, just in case. It is not something we need worry about until they reach the very end.
 

Baby Bunty

Registered User
Jan 24, 2018
297
Oh timeout..i was heart broken to read your thread..how cruel is this disease..my mum been classed as end off life back in march..and low and behold she still here!!..myself and family are like nervous wrecks..my whole time now is consumed with mum...holidays cancelled last year..i spend my whole days and night thing none stop off mum..its got to point i go to bed with mobile and house phone with me...i really hope my mums journey is as long as your poor mums..were is the dignity...i have a thread called end coming soon?..take care and prayers to to all.xx
 

Theresalwaystomorrow

Registered User
Dec 23, 2017
343
hi @Timeout, just reading thru your thread how awful for you. sometimes do we do right by prolonging life? they say AB dont prolong life but i do wonder if without them nature would take its course and end this terrible time for everybody. who makes that call? personally sometimes i think care homes keep them going a lot longer than they should, i know they are all medically trained to save lives but its so cruel isent it.
thinking of you and thanks for sharing your experience.
 

Muggles

New member
Jan 20, 2019
9
A Just in Case pack is something that is used at the end of life if they are not in hospital. It contains all the drugs - painkillers and something to dry up secretions - that will be needed to make sure that their death is comfortable and peaceful. Once the end is considered to be imminent then a doctor (usually the GP) will prescribe it and it can be kept at their home until needed. Its to make sure that they dont have to wait for a doctor to prescribe the drugs and they are there on hand, just in case. It is not something we need worry about until they reach the very end.
Ah I see, ok thank you for the info.