Dementia

[mexico1970]

My Mum died yesterday from dementia.

It wasn't a dignified death.

Wouldn't recommend it.

I'm so sorry for your loss and your mums suffering mate, it's a horrible horrible condition.

 

[Damocles]

I'm so sorry for your loss and your mums suffering mate, it's a horrible horrible condition.

Thanks mate, I'm not. Happiest I've been in ages. Her dying is the best thing thats happened in years. This thing robbed her of everything and now she's out of pain and gone, it's five hundred billion times better than the "life" that she had.

Appreciate the condolences though mate, really I do.

 

[kippax123]

My Mum died yesterday from dementia.

It wasn't a dignified death.

Wouldn't recommend it.

Really sorry to hear about your loss. I can't image how difficult it must be to lose someone in such a sad way.

 

[mancboy]

Thanks mate, I'm not. Happiest I've been in ages. Her dying is the best thing thats happened in years. This thing robbed her of everything and now she's out of pain and gone, it's five hundred billion times better than the "life" that she had.

Appreciate the condolences though mate, really I do.

Im glad you can look at it with the frame of mind mate, all the same sorry for your loss.

 

[ob]

My Mum died yesterday from dementia.

It wasn't a dignified death.

Wouldn't recommend it.

Glad your mum at rest mate. Waiting on similar thing with my partner's mum. She's in care home and not good.

We thought she'd a do not send to hospital if takes ill in place as she hates them and vowed would rather die than go back in after bad experiences at start of her journey with dementia.

Took ill with flu Thurs afternoon and they sent her to A&E. Dr in hospital says if she hadn't been admitted she'd have passed away overnight. Still in hospital and think decision being made to send her back care home, make her comfortable and let her pass as her wishes

 

[mancityvstoke]

Glad your mum at rest mate. Waiting on similar thing with my partner's mum. She's in care home and not good.

We thought she'd a do not send to hospital if takes ill in place as she hates them and vowed would rather die than go back in after bad experiences at start of her journey with dementia.

Took ill with flu Thurs afternoon and they sent her to A&E. Dr in hospital says if she hadn't been admitted she'd have passed away overnight. Still in hospital and think decision being made to send her back care home, make her comfortable and let her pass as her wishes

They do lots of unnecessary interventions with very elderly people with severe dementia...it's crazy and yeah I've experienced this with three family members.

Just let them go in peace. (If that's possible)

 

[Tuearts right boot]

Thanks mate, I'm not. Happiest I've been in ages. Her dying is the best thing thats happened in years. This thing robbed her of everything and now she's out of pain and gone, it's five hundred billion times better than the "life" that she had.

Appreciate the condolences though mate, really I do.

Those were exactly my thoughts when my mum died of it.

 

[Zabbasbeard]

Thanks mate, I'm not. Happiest I've been in ages. Her dying is the best thing thats happened in years. This thing robbed her of everything and now she's out of pain and gone, it's five hundred billion times better than the "life" that she had.

Appreciate the condolences though mate, really I do.

Thinking of you. Glad she is at rest and you don't have to suffer too. It is such a cruel illness. My Mum has dementia. She was an active 82 year old then Covid isolation came along and accelerated any predisposition she had to dementia. She still recognises us but for how long?

 

[mancityvstoke]

Thinking of you. Glad she is at rest and you don't have to suffer too. It is such a cruel illness. My Mum has dementia. She was an active 82 year old then Covid isolation came along and accelerated any predisposition she had to dementia. She still recognises us but for how long?

Thoughts are with you mate.....keep strong for her.

 

[ob]

Thinking of you. Glad she is at rest and you don't have to suffer too. It is such a cruel illness. My Mum has dementia. She was an active 82 year old then Covid isolation came along and accelerated any predisposition she had to dementia. She still recognises us but for how long?

Know feeling mate and it's horrible.

My partner's mother exactly same. Pre COVID going out on bus 2 or 3 times a week, doing shopping, out walking etc.

Barely out the door during it and then into care home straight after.

 

[Damocles]

Glad your mum at rest mate. Waiting on similar thing with my partner's mum. She's in care home and not good.

We thought she'd a do not send to hospital if takes ill in place as she hates them and vowed would rather die than go back in after bad experiences at start of her journey with dementia.

Took ill with flu Thurs afternoon and they sent her to A&E. Dr in hospital says if she hadn't been admitted she'd have passed away overnight. Still in hospital and think decision being made to send her back care home, make her comfortable and let her pass as her wishes

Sort of what happened with my Mum. She's been ill for 20 years due to diabetes and the way it breaks your body down. First she lost her sight, then organ damage, had three different types of cancer including a double mastectomy, lost feeling in her legs etc. Was a slow process. But about 5 years ago she was diagnosed with dementia and that was actually the worst of it. The physical stuff you can handle, even blindness which is really shit tbh. But I described it as like losing 1% of their personality and brain per month. It's a slow and degenerative condition most of the time and in a way, you almost start taking it for granted because you're there often and you only see a very slow thing. Frog/boiling water idea.

There were two major incidents though. About four years ago, she was rushed to hospital from a normal care home with extremely low blood sugar. This might sound dramatic but Mum's blood sugars have been all over the place her entire life and I phoned my first 999 ambulance at about 5 years old so it we knew the drill by now. They stabilise her, spend a few days in there then send her home. Myself and my aunt never believed this was diabetic related because when she woke up, if felt like she had fallen off a cliff mentally, we thought it was a stroke leading to vascular dementia which worsened the condition. Her care home at the time very helpfully refused to take her back when she was in hospital as her needs were "too complex" for them to maange so she was homeless and dumped in a hospital over Xmas which wasn't fun.

We managed to get her into Whittle Hall in Warrington, which is a 5 star hotel masquerading as a dementia specialist care home. Her room was bigger than my first flat and the staff were incredible.

Anyway, in September she had lost control of most of her faculties but there was still a bit of her there and she was lucid enough to hold conversations (well, to listen to them although not remember much of them). She began bleeding and was taken to hospital. While in there, we discovered that she had another form of cancer but to confirm with a biopsy would mean sedating her and there's an extremely high chance that she'd either die on the table or lose brain function to the point of becoming a vegetable, so I spoke to the Docs and decided to send her back home without treatment. The cancer could have taken 3 months or 3 years and she had 0 chance of surviving chemo so better to manage the pain and keep what bit of personality she had. She was in hospital for about 2 weeks and again, she just deteriorated in there rapidly. When she came out, she couldn't feed herself any more and she essentially stopped eating.

And that was basically it until a week ago today where she had a stroke. The care home called me and informed me that she had had a stroke and they wanted to know what I wanted to do about it. Knowing that she despised the hospital and that people that ill are probably not running the marathon after another stroke, I decided to keep her out of hospital and to wait there. She lost the power of speech during the stroke and then a couple of days later she couldn't swallow so we pumped her full of morphine to keep her comfortable and sat around waiting for her to die. She was only actually in a proper vegetative state for about 3 days as she got worse over the week so it could have been a lot lot worse and we're very lucky that she was in a fantastic care home with great staff because there's some amazing people out there who are dying in damp bedsits almost alone and they don't deserve it. Mum landed on her feet in terms of accomodation and care quality and in how quickly the end came all in. Some people stay in that vegetative state for ages because their families refuse to see the situation and pump them full of IV fluids to keep a husk alive. I just wanted her to die, she lost any form of personality, dignity, autonomy, independence, or humanity.

One of the things that it's difficult to remember when you look in the mirror is that you're not looking at yourself. You're looking at the vehicle that you are driving. You can chop your hand off and you're still you because you are not your body and your body is not you. It's a consciousness, the completely and utterly unique collections of pathways in the human brain that no other person who has ever existed or will exist has, that makes up your thoughts, feelings, opinions, your life and consciousness. Spiritual people sometimes call it a soul. The thing that died the other day was the vehicle that my Mum used to drive around in. Perhaps the very last remnants of a "soul" might have been there but it was not her by any meaningful metric of the word "her". The driver departed as the vehicle was still moving, as sometimes happens, the only thing that was left was to let the rest of it go and be thankful that we had the opporunity to say our goodbyes unlike many millions per year whose family are taken quickly, without rhyme or reason.

As far as dementia deaths go, she was on the better side of the averages, again mainly thanks to the staff at Whittle Hall who were incredible with her. My Mum used to be an analyst of the NHS for a while, helping sit on some committees with political staff to help them understand the issues. One of the things she always used to say is that sometimes, people live far too long, we keep them alive well past where they should naturally have passed because our medical science has progressed so much and its one of the drains on the system. I know she wouldn't wanted to take a bed at Whittle, to take the money from the taxpayer, to live as a vegetable. She always made her views on that pretty clear.

 

[city2]

My Mum died yesterday from dementia.

It wasn't a dignified death.

Wouldn't recommend it.

So sorry to hear , your mum is free at last and it’s a blessing.

 

[cookster]

Sorry for your loss blue.

 

[BeerIsTheBest]

Sort of what happened with my Mum. She's been ill for 20 years due to diabetes and the way it breaks your body down. First she lost her sight, then organ damage, had three different types of cancer including a double mastectomy, lost feeling in her legs etc. Was a slow process. But about 5 years ago she was diagnosed with dementia and that was actually the worst of it. The physical stuff you can handle, even blindness which is really shit tbh. But I described it as like losing 1% of their personality and brain per month. It's a slow and degenerative condition most of the time and in a way, you almost start taking it for granted because you're there often and you only see a very slow thing. Frog/boiling water idea.

There were two major incidents though. About four years ago, she was rushed to hospital from a normal care home with extremely low blood sugar. This might sound dramatic but Mum's blood sugars have been all over the place her entire life and I phoned my first 999 ambulance at about 5 years old so it we knew the drill by now. They stabilise her, spend a few days in there then send her home. Myself and my aunt never believed this was diabetic related because when she woke up, if felt like she had fallen off a cliff mentally, we thought it was a stroke leading to vascular dementia which worsened the condition. Her care home at the time very helpfully refused to take her back when she was in hospital as her needs were "too complex" for them to maange so she was homeless and dumped in a hospital over Xmas which wasn't fun.

We managed to get her into Whittle Hall in Warrington, which is a 5 star hotel masquerading as a dementia specialist care home. Her room was bigger than my first flat and the staff were incredible.

Anyway, in September she had lost control of most of her faculties but there was still a bit of her there and she was lucid enough to hold conversations (well, to listen to them although not remember much of them). She began bleeding and was taken to hospital. While in there, we discovered that she had another form of cancer but to confirm with a biopsy would mean sedating her and there's an extremely high chance that she'd either die on the table or lose brain function to the point of becoming a vegetable, so I spoke to the Docs and decided to send her back home without treatment. The cancer could have taken 3 months or 3 years and she had 0 chance of surviving chemo so better to manage the pain and keep what bit of personality she had. She was in hospital for about 2 weeks and again, she just deteriorated in there rapidly. When she came out, she couldn't feed herself any more and she essentially stopped eating.

And that was basically it until a week ago today where she had a stroke. The care home called me and informed me that she had had a stroke and they wanted to know what I wanted to do about it. Knowing that she despised the hospital and that people that ill are probably not running the marathon after another stroke, I decided to keep her out of hospital and to wait there. She lost the power of speech during the stroke and then a couple of days later she couldn't swallow so we pumped her full of morphine to keep her comfortable and sat around waiting for her to die. She was only actually in a proper vegetative state for about 3 days as she got worse over the week so it could have been a lot lot worse and we're very lucky that she was in a fantastic care home with great staff because there's some amazing people out there who are dying in damp bedsits almost alone and they don't deserve it. Mum landed on her feet in terms of accomodation and care quality and in how quickly the end came all in. Some people stay in that vegetative state for ages because their families refuse to see the situation and pump them full of IV fluids to keep a husk alive. I just wanted her to die, she lost any form of personality, dignity, autonomy, independence, or humanity.

One of the things that it's difficult to remember when you look in the mirror is that you're not looking at yourself. You're looking at the vehicle that you are driving. You can chop your hand off and you're still you because you are not your body and your body is not you. It's a consciousness, the completely and utterly unique collections of pathways in the human brain that no other person who has ever existed or will exist has, that makes up your thoughts, feelings, opinions, your life and consciousness. Spiritual people sometimes call it a soul. The thing that died the other day was the vehicle that my Mum used to drive around in. Perhaps the very last remnants of a "soul" might have been there but it was not her by any meaningful metric of the word "her". The driver departed as the vehicle was still moving, as sometimes happens, the only thing that was left was to let the rest of it go and be thankful that we had the opporunity to say our goodbyes unlike many millions per year whose family are taken quickly, without rhyme or reason.

As far as dementia deaths go, she was on the better side of the averages, again mainly thanks to the staff at Whittle Hall who were incredible with her. My Mum used to be an analyst of the NHS for a while, helping sit on some committees with political staff to help them understand the issues. One of the things she always used to say is that sometimes, people live far too long, we keep them alive well past where they should naturally have passed because our medical science has progressed so much and its one of the drains on the system. I know she wouldn't wanted to take a bed at Whittle, to take the money from the taxpayer, to live as a vegetable. She always made her views on that pretty clear.

God bless you mate. I lost my mum to dementia related problem but nothing like your journey. After 8 years of descending health and problems I ended up letting my mum go through phunomia rather than agreeing to yet another intervention.
The one solace I got was from a medical guy who said keeping mum going would be for me and not for her.
Be strong, remember and celebrate the good times.

 

[Zabbasbeard]

Thoughts are with you mate.....keep strong for her.

Thanks Blue. Incidentally she's in hospital in Stoke (!), waiting for assessment about where to go next.

 

[Zabbasbeard]

Know feeling mate and it's horrible.

My partner's mother exactly same. Pre COVID going out on bus 2 or 3 times a week, doing shopping, out walking etc.

Barely out the door during it and then into care home straight after.

Thanks mate. It is horrible. Really feel for your partner and you. It is such a cruel illness. Things have been going wrong physically too and she can't remember having falls.

In early 2020 my Mum was driving around, socialising, an active member of her church, played the organ at services. She'd done really well after being widowed. Then came Covid...

 

[Rammy Blue]

Me and my brother are just at the early stages of our dementia journey with our mum, she’s still in denial, which we were for a while too, but have at least got her to the doctors and she’s now had a scan and the specialist dementia team have been round to her house to see mum and her partner.

It all started from the usual “not being able to find the words“ about 2 years ago, and now she just doesn’t retain anything you tell her, it was her birthday yesterday and I phoned to say I would come round at 12 and reiterated it twice yet when I got there they were driving off to her friends and I got the “you didn’t say you were coming“ line.

She has stock questions she asks about me and the grandkids but she doesn’t compute and retain the answers so you then get the same questions 5 minutes later, and then the next time we speak it’s the same questions.

It’s awful knowing it’s only going to get worse.

Had a feeling I’d posted in this thread previously, and very coincidental that I’ve seen it today as don’t often pop in to off topic.

Wow, how our last couple of years has gone is quite beyond belief.

My mum, mentioned above, eventually got diagnosed as Alzheimer’s, she’s actually not doing too bad currently, looked after by her partner well, and she still knows it’s me although can’t remember name at times, lol. Take her out for lunch once a week, phone every day, and it lifts her. She’s lost interest in her grandkids which is a crying shame, but her partner is all that effectively matters to her now, she follows him round and he can’t be out of her sight. I get it, but it’s painful.

Where our life has gone mental is the in laws. My father in law has had dementia for about 10 years, very gradual basic dementia of not being able to remember stuff and repeatedly asking the same questions. His decline though is very gradual, still knows us all, and just has the odd outburst of anger.

Mother in law always been sharp as a tack, and then boom, all started about 18 months ago with the odd clanger related to dates and times, just put down to old age etc. Slowly but surely more random things happened, turned up a day early for Xmas day just over a year ago, laden with presents and shouting merry Xmas as came through the door on Xmas eve morn, lol. Then last Easter when she always does a lamb roast dinner, she phoned on Easter Sunday at 6 in the morning asking where were we as the dinner was out, she’d cooked in the middle of the night. More and more random shit but she keeps passing all the tests and had scans that came back clear etc, so family just grasped a straws that it was something that could be diagnosed eventually and maybe down to medications or depression etc.

Fast forward last couple of months, become more and more withdrawn and started this mad belief that her house wasn’t her house, kept telling us there was another home. Other than that quite lucid though, but alarm bells ringing a bit more. Anyway, 3 weeks ago, suddenly starts hallucinating and believing all sorts of mad shit going on, phone calls in middle of night to us saying off to an appointment, then other day calling us to say people were running around the house and in her car and the police were there, I zoomed round and of course nothing going on but she was insistent and talking to the imaginary police in front of me and my son, whilst still in belief people were in her car and running around the house. She’s been “on this trip” for 7 days now, moving stuff round the house, constantly in belief she’s in different places other than in her house. It’s fucking bizarre. Bear in mind father in law still there, who she is main carer for, and he’s believing the shit she’s telling him, culminating in her not thinking it’s her husband and he’s a neghbour and telling him he needs to get a taxi and go back to his wife and kids, which he then puts his coat and shoes on and thinks he is leaving!

5am yesterday, awoken by loud banging at our front door, legged it downstairs with missus knowing full well who would be at the door, and yes it was the police, she’d gone wandering in the night, piss wet through in the rain, fell and banged her head and was taken to hospital by the ambulance. They’ve now diagnosed her as Lewy Body Dementia which is apparently somewhere between Alzheimer’s and Parkinsons, and she does have the list of symptoms to a tee, so at least we’ve got an idea of what we are now dealing with.

So, we have 3 parents between us - my mum Alzheimer’s, mother in law this Lewy Body, and father in law with long term dementia.

Realisation of what the next few years holds for us is dawning, and can’t say we are looking forward to it.

 

[Damocles]

They’ve now diagnosed her as Lewy Body Dementia which is apparently somewhere between Alzheimer’s and Parkinsons, and she does have the list of symptoms to a tee, so at least we’ve got an idea of what we are now dealing with.

If I remember right, it's essentially all the same thing. Alzheimers, Parkinsons, LBD, etc. The different names are differences in what part of the brain is being affected the most but it's all the same process.

 

[hilts]

Sort of what happened with my Mum. She's been ill for 20 years due to diabetes and the way it breaks your body down. First she lost her sight, then organ damage, had three different types of cancer including a double mastectomy, lost feeling in her legs etc. Was a slow process. But about 5 years ago she was diagnosed with dementia and that was actually the worst of it. The physical stuff you can handle, even blindness which is really shit tbh. But I described it as like losing 1% of their personality and brain per month. It's a slow and degenerative condition most of the time and in a way, you almost start taking it for granted because you're there often and you only see a very slow thing. Frog/boiling water idea.

There were two major incidents though. About four years ago, she was rushed to hospital from a normal care home with extremely low blood sugar. This might sound dramatic but Mum's blood sugars have been all over the place her entire life and I phoned my first 999 ambulance at about 5 years old so it we knew the drill by now. They stabilise her, spend a few days in there then send her home. Myself and my aunt never believed this was diabetic related because when she woke up, if felt like she had fallen off a cliff mentally, we thought it was a stroke leading to vascular dementia which worsened the condition. Her care home at the time very helpfully refused to take her back when she was in hospital as her needs were "too complex" for them to maange so she was homeless and dumped in a hospital over Xmas which wasn't fun.

We managed to get her into Whittle Hall in Warrington, which is a 5 star hotel masquerading as a dementia specialist care home. Her room was bigger than my first flat and the staff were incredible.

Anyway, in September she had lost control of most of her faculties but there was still a bit of her there and she was lucid enough to hold conversations (well, to listen to them although not remember much of them). She began bleeding and was taken to hospital. While in there, we discovered that she had another form of cancer but to confirm with a biopsy would mean sedating her and there's an extremely high chance that she'd either die on the table or lose brain function to the point of becoming a vegetable, so I spoke to the Docs and decided to send her back home without treatment. The cancer could have taken 3 months or 3 years and she had 0 chance of surviving chemo so better to manage the pain and keep what bit of personality she had. She was in hospital for about 2 weeks and again, she just deteriorated in there rapidly. When she came out, she couldn't feed herself any more and she essentially stopped eating.

And that was basically it until a week ago today where she had a stroke. The care home called me and informed me that she had had a stroke and they wanted to know what I wanted to do about it. Knowing that she despised the hospital and that people that ill are probably not running the marathon after another stroke, I decided to keep her out of hospital and to wait there. She lost the power of speech during the stroke and then a couple of days later she couldn't swallow so we pumped her full of morphine to keep her comfortable and sat around waiting for her to die. She was only actually in a proper vegetative state for about 3 days as she got worse over the week so it could have been a lot lot worse and we're very lucky that she was in a fantastic care home with great staff because there's some amazing people out there who are dying in damp bedsits almost alone and they don't deserve it. Mum landed on her feet in terms of accomodation and care quality and in how quickly the end came all in. Some people stay in that vegetative state for ages because their families refuse to see the situation and pump them full of IV fluids to keep a husk alive. I just wanted her to die, she lost any form of personality, dignity, autonomy, independence, or humanity.

One of the things that it's difficult to remember when you look in the mirror is that you're not looking at yourself. You're looking at the vehicle that you are driving. You can chop your hand off and you're still you because you are not your body and your body is not you. It's a consciousness, the completely and utterly unique collections of pathways in the human brain that no other person who has ever existed or will exist has, that makes up your thoughts, feelings, opinions, your life and consciousness. Spiritual people sometimes call it a soul. The thing that died the other day was the vehicle that my Mum used to drive around in. Perhaps the very last remnants of a "soul" might have been there but it was not her by any meaningful metric of the word "her". The driver departed as the vehicle was still moving, as sometimes happens, the only thing that was left was to let the rest of it go and be thankful that we had the opporunity to say our goodbyes unlike many millions per year whose family are taken quickly, without rhyme or reason.

As far as dementia deaths go, she was on the better side of the averages, again mainly thanks to the staff at Whittle Hall who were incredible with her. My Mum used to be an analyst of the NHS for a while, helping sit on some committees with political staff to help them understand the issues. One of the things she always used to say is that sometimes, people live far too long, we keep them alive well past where they should naturally have passed because our medical science has progressed so much and its one of the drains on the system. I know she wouldn't wanted to take a bed at Whittle, to take the money from the taxpayer, to live as a vegetable. She always made her views on that pretty clear.

Sorry to hear what you have gone through mate, my mother is unfortunately now on this journey as well compounded by the loss of my father due to sepsis while fighting cancer.

Sometimes life is just fucking shit. I hope you can find some peace in knowing her suffering is over.

 

[Rammy Blue]

If I remember right, it's essentially all the same thing. Alzheimers, Parkinsons, LBD, etc. The different names are differences in what part of the brain is being affected the most but it's all the same process.

Apparently different medications for the different diagnoses.