I think this is the beginning of the end - Alzheimers
Discussion
My mum was diagnosed years ago and has substantially outlived that standard timeframe already but just over 2 years ago my Dad had to accept it was time for her to get the extra care by her going into a Care Home. She had in the months previously broken her right hip but within a week was up on her feet like it never happened.
Her memory was shot as you'd expect but she would wander around the care home and seemed to adapt well to living there, not that she knew who we were when we visit.
Fast forward a few weeks back and she'd fallen and broken her other hip, this time after the operation she has not walked and largely remains in bed asleep. Upon visiting yesterday she is starting to struggle to swallow although this could be because she was sleepy.
She's always enjoyed a cheeky afternoon nap but she sleeps so much now and only occasionally allows them to hoist her into wheelchair so I think this could be the beginning of her slipping away.
It would be a blessing for her as her only quality of life was the ability to wander around the home so now she cannot do that when she is awake she has nothing to do, cannot really communicate with others which is why I also think she sleeps a lot. The logical part of me is hoping she passes soon but I know once she does it will hit me hard - I've been trying to remove the emotion from making decision for her as I have POA but when the emotion kicks in I'm sure it will be hard.
Anyone else had a similar experience with a bed bound patient?
Her memory was shot as you'd expect but she would wander around the care home and seemed to adapt well to living there, not that she knew who we were when we visit.
Fast forward a few weeks back and she'd fallen and broken her other hip, this time after the operation she has not walked and largely remains in bed asleep. Upon visiting yesterday she is starting to struggle to swallow although this could be because she was sleepy.
She's always enjoyed a cheeky afternoon nap but she sleeps so much now and only occasionally allows them to hoist her into wheelchair so I think this could be the beginning of her slipping away.
It would be a blessing for her as her only quality of life was the ability to wander around the home so now she cannot do that when she is awake she has nothing to do, cannot really communicate with others which is why I also think she sleeps a lot. The logical part of me is hoping she passes soon but I know once she does it will hit me hard - I've been trying to remove the emotion from making decision for her as I have POA but when the emotion kicks in I'm sure it will be hard.
Anyone else had a similar experience with a bed bound patient?
Sorry to hear this OP, my Mum went last week after spending her last 12 months in a care home with dementia.
She went down hill very quickly in the end due to an infection and made 94 but her quality of life and dignity had been gone for several years and it was pitiful to see the once strong, feisty, independent, woman pretty much helpless in there.
This will be no solace for you but for us at least it was a blessing in the end and a release for her, also helped by it being peaceful and painless.
Oddly enough there were no tears or grief from the family in the end - it was a relief and what she wanted. She had been 'ready' for a few years and we had probably been grieving without knowing it for some time.
She went down hill very quickly in the end due to an infection and made 94 but her quality of life and dignity had been gone for several years and it was pitiful to see the once strong, feisty, independent, woman pretty much helpless in there.
This will be no solace for you but for us at least it was a blessing in the end and a release for her, also helped by it being peaceful and painless.
Oddly enough there were no tears or grief from the family in the end - it was a relief and what she wanted. She had been 'ready' for a few years and we had probably been grieving without knowing it for some time.
My mum suffered with fibrosis of the lungs, to see a relatively healthy woman reduced to someone on permanent O2 just to breathe and unable to do anything for herself, after 3years post diagnosis it was an absolute blessing when she passed.
So so sad to have to endure it, old age isn't pleasant, I think in years to come voluntary euthanasia will become more acceptable (hopefully) after all we treat dogs more humanely in their final days...
I feel your anguish
Good luck...
So so sad to have to endure it, old age isn't pleasant, I think in years to come voluntary euthanasia will become more acceptable (hopefully) after all we treat dogs more humanely in their final days...
I feel your anguish
Good luck...
Sadly it sounds like the beginning of the end as my father in law has just gone through it. Once the ability to swallow comes on, it's not long.
I saw a brilliant man, a mechanical engineer who could tackle anything quickly begin to lose his train of thought, change personality and ultimately end up in care, incontinent and completely detached from everyone. Would he want to be alive in his final state? No. So whilst it was hard you try to take emotion out of any decisions. We had a DNR in place in the hope he slipped away naturally. Fortunately he did.
Yes its hard, but aim to look back on the good pre dementia times balanced against what your mum would want if she could make an informed decision.
I saw a brilliant man, a mechanical engineer who could tackle anything quickly begin to lose his train of thought, change personality and ultimately end up in care, incontinent and completely detached from everyone. Would he want to be alive in his final state? No. So whilst it was hard you try to take emotion out of any decisions. We had a DNR in place in the hope he slipped away naturally. Fortunately he did.
Yes its hard, but aim to look back on the good pre dementia times balanced against what your mum would want if she could make an informed decision.
My dad is 83 and went into care at the start of May with Alzheimer’s and Vascular Dementia. His mobility has really gone downhill in the past three months (when he went in he could get about using a walker, now he struggles to stand and walking a few metres with it is a massive effort), so I see this as the beginning of the end. He’s pretty much lost the art of conversation, just nods and smiles at things but doesn’t have the capacity to answer back.
As others have said it is sad to see someone who was my hero as a kid, physically strong, reduced to a shell of his former self. My only real wish now is that his eventual passing is not a horribly drawn out affair, it’s the last thing he would want.
As others have said it is sad to see someone who was my hero as a kid, physically strong, reduced to a shell of his former self. My only real wish now is that his eventual passing is not a horribly drawn out affair, it’s the last thing he would want.
Thank you for the replies and appreciate all been said.
She has a DNR but although I have POA we do not have an Advanced Directive in place, I did not know this was such a thing until she was in hospital with her more recent broken hip.
If she gets a chest infection now I would not want it treated and let nature take it's course but because we do not have this Advanced Directive they may have to treat her. It will only prolong the miserable time she has left on this world.
She was a strong, fierce woman who had the most amazing memory and worked in the legal field. She would have hated to know she would end up like this.
If any good has come out of this, I have been able to talk to my Dad about his wishes and we are getting an Advance Directive in place for him.
She has a DNR but although I have POA we do not have an Advanced Directive in place, I did not know this was such a thing until she was in hospital with her more recent broken hip.
If she gets a chest infection now I would not want it treated and let nature take it's course but because we do not have this Advanced Directive they may have to treat her. It will only prolong the miserable time she has left on this world.
She was a strong, fierce woman who had the most amazing memory and worked in the legal field. She would have hated to know she would end up like this.
If any good has come out of this, I have been able to talk to my Dad about his wishes and we are getting an Advance Directive in place for him.
My dad had both Vascular and Alzheimers and it was very long drawn out in hospital/care (5 years from being sectioned). Once they get to the final stages there is no quality of life so don't beat yourself up about wishing her passing. Seeing the numerous people from various walks of life degenerating in the care home was tough.
Not sure if it'll apply to your mum but it was quite enlightening with my dad that they knew he was going to die within two weeks. The giveaway was that he kept looking upwards. Apparently the muscles in the back of the neck start to constrict at the very last stage and they can then predict reasonably accurately the time left.
Not sure if it'll apply to your mum but it was quite enlightening with my dad that they knew he was going to die within two weeks. The giveaway was that he kept looking upwards. Apparently the muscles in the back of the neck start to constrict at the very last stage and they can then predict reasonably accurately the time left.
Speed 3 said:
Not sure if it'll apply to your mum but it was quite enlightening with my dad that they knew he was going to die within two weeks. The giveaway was that he kept looking upwards. Apparently the muscles in the back of the neck start to constrict at the very last stage and they can then predict reasonably accurately the time left.
That is interesting, I will see if I notice that. Thank you.Speed 3 said:
Not sure if it'll apply to your mum but it was quite enlightening with my dad that they knew he was going to die within two weeks. The giveaway was that he kept looking upwards. Apparently the muscles in the back of the neck start to constrict at the very last stage and they can then predict reasonably accurately the time left.
Sad but useful to know. My dad is at the stage where his body clock has completely gone, he gets up at night in the care home and tries to walk about (with associated falls because his legs are so weak/messages from brain to legs aren't getting there) so they have "changed his medication".
I'm still waiting to know what he is on - the care home are being a bit slack about telling me - but I suspect it is some kind of sleeping pill to zonk him out at night.
It's a real dilemma for me; his sister had dementia and her personality completely changed in the latter stages, she became very nasty towards her own children, but fine with other people. In the end she was having repeated falls and eventually had one fall too many where she hit her head so hard she suffered a bleed on the brain which proved fatal. I fear my dad is headed in the same direction and obviously don't want him to meet a blunt trauma type end.
It must be incredibly difficult for the night staff in care homes, dad has an electric mat by the side of his bed that alerts if he gets up and steps on it. I suspect the massive challenge for them is responding to that alert before he gets out of bed in the dark and keels over.
It sounds harsh, but in my aunt's case her sudden end was a blessed relief, she had very little quality of life, this event stopped the agony being prolonged for everyone, I just don't like to think of the same happening to my dad.
Lost my mum to AD and vascular dementia 4 years ago - 2019. The first signs were 5-6 years prior to this. Whilst I saw changes, I was too close to see the steps that others could. She spent 2 years in a home, but she did not want to be there. As her condition progressed her resistance melted away.
Final months she was sleepy and started to stay in bed. About 10 days before she passed, she became quieter, sleeper and eventually stopped eating and drinking. Nature took its course, and without any kinds of medication being involved, she passed away.
Emotions were a mixture of sadness, resignation and relief. Her deterioration was over such a period that I pretty much accepted and prepared for the inevitable some 24 months earlier.
It's all entirely natural, but difficult too. Spend whatever time you need with loved ones. It's as much for you as for them.
Final months she was sleepy and started to stay in bed. About 10 days before she passed, she became quieter, sleeper and eventually stopped eating and drinking. Nature took its course, and without any kinds of medication being involved, she passed away.
Emotions were a mixture of sadness, resignation and relief. Her deterioration was over such a period that I pretty much accepted and prepared for the inevitable some 24 months earlier.
It's all entirely natural, but difficult too. Spend whatever time you need with loved ones. It's as much for you as for them.
Solo, sorry to read your post.
I’m in a similar position with my MIL who has now been in hospital for over a month recovering from a fractured femur and now combating sepsis and a chest infection although for now the various antibiotics seem to be helping.
Her dementia has got so much worse too.
It’s her 91st Birthday on Sunday so we are hoping.
And then yesterday I learned that my elderly Aunt for whom I hold LPA has been diagnosed with incurable cancer.
The “ only “ saving grace for her is her Dementia which has also deteriorated following a fall.
I’m in a similar position with my MIL who has now been in hospital for over a month recovering from a fractured femur and now combating sepsis and a chest infection although for now the various antibiotics seem to be helping.
Her dementia has got so much worse too.
It’s her 91st Birthday on Sunday so we are hoping.
And then yesterday I learned that my elderly Aunt for whom I hold LPA has been diagnosed with incurable cancer.
The “ only “ saving grace for her is her Dementia which has also deteriorated following a fall.
Armitage.Shanks said:
I saw a brilliant man, a mechanical engineer who could tackle anything quickly begin to lose his train of thought, change personality and ultimately end up in care, incontinent and completely detached from everyone. Would he want to be alive in his final state? No.
God, that gave me a lump in my throat - you could be writing about my dad who died last year. Absolutely identical, even down to the occupation.He was well looked after, but would never have wanted to live like that.
You have my sympathies, OP (and everyone who has been/is going through this). I wouldn't wish it on my worst enemy.
PurpleTurtle said:
My dad is 83 and went into care at the start of May with Alzheimer’s and Vascular Dementia. His mobility has really gone downhill in the past three months (when he went in he could get about using a walker, now he struggles to stand and walking a few metres with it is a massive effort), so I see this as the beginning of the end. He’s pretty much lost the art of conversation, just nods and smiles at things but doesn’t have the capacity to answer back.
As others have said it is sad to see someone who was my hero as a kid, physically strong, reduced to a shell of his former self. My only real wish now is that his eventual passing is not a horribly drawn out affair, it’s the last thing he would want.
Sorry to hear this. It feels as though I'm on the start of this journey with my dad. Even talking to him about things he loves, planes for instance he just mods and makes the right noises but I can tell he's either not listening or not understanding. As others have said it is sad to see someone who was my hero as a kid, physically strong, reduced to a shell of his former self. My only real wish now is that his eventual passing is not a horribly drawn out affair, it’s the last thing he would want.
He goes out every day to the shops etc but I worry all the time and he's very repetitive. Even to the point he'll tell me something and getting to the end of the tale it reminds him of the same tale and tells me again.
This has happened so fast.
TUS373 said:
Lost my mum to AD and vascular dementia 4 years ago - 2019. The first signs were 5-6 years prior to this. .
Mum first showed signs of AD when she would look after my toddler son whilst I worked, he is now a strapping 6'4" and 18 next month so she has outlived the normal time parameters by years. Actual confirmation of AD was about 3 years after that because she was/is a stubborn woman!She became housebound by refusing to go out anymore about 6 years ago and about a year later could no longer work her mobile phone so we cancelled the contract.
I've heard of quite a few since her first diagnosis get the same and pass away yet she still lingers. Life is so cruel. I've already told my kids that if I get this to do nothing to prolong my life, I am going to die anyway from it so I might as well ease all our suffering by going quicker. I've told them to not force me to eat or offer drink unless I ask for it when I get to that stage so that I pass as soon as possible.
Darumvej said:
My mother was diagnosed with early onset dementia at 56 years old, she passed away when 66.
last 2 years totally bed bound. Couldn't speak for the last four years. To see anyone or anything suffer like this let alone your parent is heart breaking.
Sorry to hear this. Very early. last 2 years totally bed bound. Couldn't speak for the last four years. To see anyone or anything suffer like this let alone your parent is heart breaking.
Sorry to hear this OP, Alzheimer’s is a cruel disease. We lost my great aunt (more a grandparent, really) just the other week at 93. She’d been in a care home deteriorating for over three years. It’s a mark of the woman she was that she hung on for so long, but she would have been horrified at what she had sadly become - as you describe, numerous falls, gradually declining until she became bed bound and then just sleepier and sleepier until all she did was sleep.
We received a call from the home one day recently that she’d refused her food and drink, and sadly, that is the beginning of the end. It’s the body’s way of shutting down prior to death, and rarely does the “not eating or drinking” phase last more than a handful of days. She passed away three or four days later.
My thoughts and best wishes to you and your family.
We received a call from the home one day recently that she’d refused her food and drink, and sadly, that is the beginning of the end. It’s the body’s way of shutting down prior to death, and rarely does the “not eating or drinking” phase last more than a handful of days. She passed away three or four days later.
My thoughts and best wishes to you and your family.
timbob said:
We received a call from the home one day recently that she’d refused her food and drink, and sadly, that is the beginning of the end. It’s the body’s way of shutting down prior to death, and rarely does the “not eating or drinking” phase last more than a handful of days. She passed away three or four days later.
My thoughts and best wishes to you and your family.
I long for that call so my mother can finally rest in peace.My thoughts and best wishes to you and your family.
My dad is so torn with everything. Whilst we were visiting last weekend we were asked to sign her covid vaccine permission form. I was against it, she's had it 3 times already without barely a hint of trouble which was amazing given she also have COPD but my dad was adament she had it, so she will as he has final say in my opinion being her husband.
Yet talking to him about the pro's and con's of having it, he said if he was in this situation then not to let him have it. I have told him we must get him an Advanced Directive sorted so I can carry out his wishes even though I have POA on him too. He just cannot as he puts it sign his wife's death notice. I understand and I am doing my best to do what I know she would have wanted without the emotion of it being my mum but he can't do it. We may have a rocky time ahead if and when she gets and infection and we need to agree on a treatment...
solo2 said:
timbob said:
We received a call from the home one day recently that she’d refused her food and drink, and sadly, that is the beginning of the end. It’s the body’s way of shutting down prior to death, and rarely does the “not eating or drinking” phase last more than a handful of days. She passed away three or four days later.
My thoughts and best wishes to you and your family.
I long for that call so my mother can finally rest in peace.My thoughts and best wishes to you and your family.
My dad is so torn with everything. Whilst we were visiting last weekend we were asked to sign her covid vaccine permission form. I was against it, she's had it 3 times already without barely a hint of trouble which was amazing given she also have COPD but my dad was adament she had it, so she will as he has final say in my opinion being her husband.
Yet talking to him about the pro's and con's of having it, he said if he was in this situation then not to let him have it. I have told him we must get him an Advanced Directive sorted so I can carry out his wishes even though I have POA on him too. He just cannot as he puts it sign his wife's death notice. I understand and I am doing my best to do what I know she would have wanted without the emotion of it being my mum but he can't do it. We may have a rocky time ahead if and when she gets and infection and we need to agree on a treatment...
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