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Can I ask a question about dying and symptoms

70 replies

StealthPolarBear · 14/02/2020 21:03

I dont want to upset anyone.
My grandad has heart failure and dementia. He's deteriorating. However his dementia has always been the slight confusion type rather than anything more perplexing (my grandma had paranoia, hallucinations, the works). While his condition is well managed he's still walking (and whistling).
However I read another thread which linked to a list of signs death will be soon.
One is sleeping a lot. He does do this and spends a lot of his time in bed, confusing dsy and night. But he isn't bed ridden.
Talking about going home and dead relatives. He's started doing this in the last week or so whereas before he was very clear who was alive and who was dead and where he lived.
When I read about those symptoms I'd assumed they were in someone who was bedridden and possibly drifting in and out of consciousness, but a few things in the list rang alarm bells. Is it likely the end is near when he's sometimes OK?
Sorry if this upsets or offends anyone. Sorry for rambling.

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TheoriginalLEM · 14/02/2020 21:05

I'm sorry I don't have any advice stealth, but you have always been kind to me Flowers

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Spied · 14/02/2020 21:11

I think it's a sign that his dementia is worsening and not necessarily that he is close to death. His brain is deteriorating but his physical body can remain relatively unscathed for many, many years.

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StealthPolarBear · 14/02/2020 21:15

Tha k you both. That was what I assumed, that it was a deterioration in dementia but that list just had me wondering.
Tbh his physical health isn't good, as I said he's in hear failure and while his medication controls it, when it goes wrong he really struggles to catch his breath. :(
Still he's mostly very happy and content and on his good days (more often than bad at the moment) he's good company.

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TabbyStar · 14/02/2020 21:15

Difficult to say, the confused sleep patterns can be a symptom of dementia, same if he is getting confused about relatives. How is his weight? Is he eating normally or any changes? Has he seen any medical professionals recently?

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StealthPolarBear · 14/02/2020 21:16

I suppose I'd rather he passed soonish rather than deteriorating much more.

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StealthPolarBear · 14/02/2020 21:21

Weight is OK I think. He's now in a home after a few hospital stays and it has done him the power of good, and they check his weight. He's now presumably taking his medication regularly and getting fed three times a day. Something my mum ran herself ragged trying to make happen when he was in a flat. But very recently he's started seeing my grandma (just to add to the confusion he's in the same place as she was but it has changed hands and changed inside and should look nothing like when he visited her) and seeing her aunts and other relatives. However he still talks about my children in vaguely sensible terms and remembers my cousin is pregnant. When my grandma was talking about seeing her mum she didn't have a clue who we were.

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ShowOfHands · 14/02/2020 21:21

My Grandma was still walking, knitting and talking cheerfully when she experienced a sudden deterioration from generalised confusion type dementia. She started "seeing" dead relatives, slept much more, asked to go home, started refusing food, increase in non-specific pain, quality of movements became jerky and stilted at intervals. She then contracted an infection (UTI) and suddenly weakened and stopped walking overnight. We were utterly shocked when she went from relatively "well" to end of life care with in a month. She died 3 weeks later. It was only in November and is still v raw. I found a few dementia websites very useful as they described expected deterioration and common signs of end of life being reached. They were spot on.

PP are right though, from a state of wellness to death, can be months or years or weeks or days.

I'm sorry.

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StealthPolarBear · 14/02/2020 21:21

So sorry show of hands Flowers

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Spied · 14/02/2020 21:22

Flowers Incredibly cruel disease that causes such distress for the whole family.
Enjoy the special times with your Grandfather and find comfort in his happiness.

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StealthPolarBear · 14/02/2020 21:26

Thank you. I feel so sorry for my mum, she went through an awful time with my grandma and now she's going through an even more stressful time with my grandad. And when it's over they'll both be gone :(

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FagAsh · 14/02/2020 21:28

He sounds very like my relative (dementia and heart failure) who gradually slept longer and deeper. He talked a lot about dead relatives, was confused yet at times still totally lucid. I think he had about ten days like this.

I’m sorry. A long drawn out death can be very draining. Flowers

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TabbyStar · 14/02/2020 21:29

I'm your mum (not your real mum!), my DF has recently died and now my DM is going downhill, it is such a difficult time, both practicality and emotionally, but it's good that she's got you thinking about her and him Thanks

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StealthPolarBear · 14/02/2020 21:33

Thank you, and sorry others are going through it too.
Having seen my grandma and knowing e prognosis, I do hope it's quick. He's still happy to see me. He still gets teased by the staff and has some form of conversation

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ShowOfHands · 14/02/2020 21:33

It's just rubbish and heartbreaking and the not knowing what will happen is ruddy shit.

It doesn't sound like he's near the end tbh. My Grandma had 5 years after entering a home and the environment itself caused more sleeping and a slight confusion/regression but she stayed well for a long time despite these adjustments.

The beginning of the end was a v marked difference. She became dependent, frail with changes in speech and abilities. It was like she was being slowly wound down. She did less and less. Repeated infections were a major sign, as well as inability to swallow, weight loss, muscle wasting. We relied on experienced staff and doctors to tell us where we were and what was expected

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StealthPolarBear · 14/02/2020 21:34

Tabby that sounds really stressful :(

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OhTheRoses · 14/02/2020 21:35

Oh it's so hard. I don't think you can tell. My grannie was well with alzheimers and went through all its iterations. For the last two years the tia's were more frequent, she forgot how to speak, walk, eat, drink and eventually to swallow. She was less than 4st 7lb when she died. It must have been five years since she knew our names or had any relatively present memory. Even then she didn't know Grandad and they were married 50 years when the dementia started and they reached 60 about 4 years before she died.

It's the most evil disease and sadly because she had no other diseases she reached it's last stages. I hope your grandad doesn't.

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StealthPolarBear · 14/02/2020 21:36

My grandad walks with a walker but when he's up and going he's still really fast (always been a fast walker). Up until a week ago he was still whistling as he walked, which was always the sound I associated with their house.

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StealthPolarBear · 14/02/2020 21:37

My grandma was similar. She had it in her early seventies and was otherwise quite fit. She lasted years and really suffered. She had no quality of life for years. My grandad is nowhere near that but physically he's much frailer.

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2018SoFarSoGreat · 14/02/2020 21:42

so sad to read this, Stealth.

My MIL had dementia, and UTI's increased her frailty and confusion drastically. She was still up and about - very confused - but looked quite strong (frankly we were scared she could go on like this forever, and would have hated being the person she had become, poor dear) until one day, she just didn't. She kept falling out of bed so we got her a hospital bed, with sides. She got in it, and never got up again. Died that night. My poor, poor DH made her so comfy, for her last sleep.

All in all, a good end. No drawn out weakening, no more scary confusion, no lingering for years losing quality of life. She was lucky.

I hope your grandad gets a good end. I'm sorry for you all. It is a horribly hard road. Flowers

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Soontobe60 · 14/02/2020 21:43

My grandma started to lose the ability to walk or communicate, almost like reverting back to infancy. She was like that for a couple of years but then there was a rapid deterioration where she began calling out her mum and dads name, plus her siblings. All were long dead. She was semi conscious for a couple of days then just slipped away.

My MIl, on the other hand, sounds more like your grandfather, plus she had COPD and heart failure. She was fairly aware and up most days in her care home, but just didn't wake up one morning. The carers didn't notice signs of imminent death, and she'd been seen by the GP the day before.

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StealthPolarBear · 14/02/2020 21:52

Thank you both, how distressing for you when yiur grandma was doing that soon. Hopefully not for her. Yes my grandma reverted to infancy too, even her hands curled back up. When I took baby ds to see her she was deteriorating, but then I took dd a couple of years later, she was less capable than toddler ds :(
It sounds both your mils had peaceful ends and that is what I am wanting for him. Maybe not for another month or so while he can still have a beer and tell me the story about his friend who used to smoke at work on the sly. But in a few weeks...

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Jessbow · 14/02/2020 21:56

Folk can live with heart failure for years- all it means is the heart is not as efficient as it was- Its failing, wearing out, NOT about to nessesarily stop any time soon.
Dementia is an arse! Talking about those passed in the present tense isnt unusual. My now late mother forgot completely that dad had died, was convinced he was shopping /in the bathroom/putting the car away. Heart breaking

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Babdoc · 14/02/2020 22:00

I’m sorry you’re having to go through this, Stealth. I often felt that it was harder for the relatives than the patient in these circumstances - it’s a strain waiting for the inevitable, and there is often anticipatory grieving as well as the emotional exhaustion.
It sounds as though grandad still has some decent quality of life, and is well cared for, so I think you need to step back a little and think of your own and your mum’s needs here. Make sure you are both getting decent sleep and meals, and have some support and comfort in real life as well as the good wishes of all of us on here.
I don’t know if you have a faith, but your local minister could be a great help and comfort in granddad’s final days. They are trained in pastoral support and bereavement care for the whole family, and do not limit themselves to just their own congregation - mine is excellent.
Sending you a hug, and my prayers that grandad has a gentle and peaceful death when the time is right for him.

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Unsureconfused46 · 14/02/2020 22:24

@StealthPolarBear I'm not sure what advice to give but your grandad sounds a very well loved man and you sound lovely. Sorry to hear he is ill. Sending hugs

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GETTINGLIKEMYMOTHER · 15/02/2020 01:57

Sorry to hear he’s ill, but I would guess the talk of people long gone is down to the dementia.

Some years before she actually died (with advanced dementia) my mother would often talk of a long ago (pre WW2) home and her parents, and want to go and visit them ‘because they must be getting old and could do with some help’. They had died over 30 and 50 years previously.

Another old lady in her care home, nowhere near death, would often very happily tell me that her mum and dad and grandparents were coming soon, and they were all going to the seaside together.

IMO it’s just a case of newer memories being lost. It’s been likened to a stack of bookshelves, oldest memories at the bottom, newest at the top, and gradually they’re all swept away, starting with the top.

For the same reason, people often eventually fail to recognise their own family members, even their spouses, presumably because they remember them - if at all - as much younger people.
My mother was frequently worried about ‘the children’ - I.e. me and siblings, by then all over 50! I was by then just a ‘nice lady’ who made her cups of tea and brought her chocolate.

But her failure to recognise me came very suddenly. One week her eyes would light up when she saw me coming - the next they were just blank.

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