Mum is in late stage Vascular Dementia and a mention about her book about WW2 Sussex

[ClaraSais]

Hi everyone,
Wow, it's been four years since I last posted on here.
My mum is still going, I don't know whether she is in the late stage dementia or end of life, the doctor called a couple of weeks ago to state that her condition had detoriated quite badly since January. She is now bed bound, no longer walks or talks or recognises me and I didn't realise til recently on little bits of pureed food as she can no longer chew. Just lies there not moving. I took my baby daughter to see her and she barely opened her eyes. Shes' 85, it's been 5 long long years, I can't stand it like this. Is it end of life??? CH said that they had another lady like that for 18 months, I don't think I can bear it. I feel guilty but I wish she would pass, what kind of life does she have, if that's what you can call it????
My dad unfortunately had a stroke which has left him disabled and with limited speech in August 2015. He is also stuck in a care home although we want him home but no care home covers our village.
I also wanted to mention that I am writing up mums memoirs/book about WW2 in Sussex and trying to get it published. It's been so so hard as it was scattered all over the house and I have been trying to put it together in some kind of order.I can't post the link yet as it won't let me but I will try a separate post about it later, it's called And A Nightingale Sang

Love to you all, I hate this disease

 

[ClaraSais]

Will try and post link shortly

Will post link shortly if will let me

 

[ClaraSais]

And A Nightingale Sang - my mothers book about WW2 Sussex

More details can be found here
https://www.facebook.com/andanightingalesang

 

[ClaraSais]

Video about mums book (which can also be found on FB Page)

https://www.youtube.com/watch?v=1v9v_bJcvDo&feature=youtu.be

 

[lemonjuice]

Hi everyone,
Wow, it's been four years since I last posted on here.
My mum is still going, I don't know whether she is in the late stage dementia or end of life, the doctor called a couple of weeks ago to state that her condition had detoriated quite badly since January. She is now bed bound, no longer walks or talks or recognises me and I didn't realise til recently on little bits of pureed food as she can no longer chew. Just lies there not moving. I took my baby daughter to see her and she barely opened her eyes. Shes' 85, it's been 5 long long years, I can't stand it like this. Is it end of life??? CH said that they had another lady like that for 18 months, I don't think I can bear it. I feel guilty but I wish she would pass, what kind of life does she have, if that's what you can call it????
. . . . . . .
Love to you all, I hate this disease

Couldn't let this go without replying.

I can sympathize entirely with what you must be going through.

The problem is that they can be 'end of life' in that they show all the 'symptoms' of being in the terminal phase but with dementia, unfortunately this doesn't mean they are going to die anytime soon necessarily.

My mother has now been 5 years in the NH and at the severe stage of dementia (7d) with similar symptoms to your mother for the past 2 years. She has, as far as I can see absolutely no Quality of Life, which the Home agrees with. Every day I pray her journey will soon come to an end,and she will have a peaceful quick end, so I do understand your feelings and I often feel I can't stand another day of watching her as she is.

During the past 5 years she's had quite a few setbacks and 2 years ago when she was losing weight dramatically and very weak the manager assured me she wouldn't be around in 12 months. Yet 2 years later she's still 'existing' as I call it, having had several setbacks and recoveries over that time.

Despite not being able to recognise food or swallow unless constantly prompted, the Home is very good at managing to feed her, so her body can manage to cope with those emergencies.

She also has heart problems, for which the Dr stopped medication 2 years ago and she hasn't restarted yet her heart problems have also stabilised.

Sometimes I think because of the severe stage she's at, totally apathetic and non-responsive, with no worries or stress, with generally good physical health otherwise that this period is lasting longer.

I'll stop there but just know you are not alone with your feelings.

 

[ClaraSais]

hi

hi
Thank you so much for your comment, I am so sad that you are going through this too.
It's utterly horrible and I wouldn't wish it on anyone, I am glad she is not in pain, and she had a very vast imagination so I am hoping it's nice where she is. She has lost so much weight, just skin and bones. Everytime I see her I cry and I know I shouldn't but it hurts so very much as you can understand.
It's bittersweet really, I was just writing up the chapter about my grandmother's death the night before I heard from the CH and Dr.
Hugs x

Couldn't let this go without replying.

I can sympathize entirely with what you must be going through.

The problem is that they can be 'end of life' in that they show all the 'symptoms' of being in the terminal phase but with dementia, unfortunately this doesn't mean they are going to die anytime soon necessarily.

My mother has now been 5 years in the NH and at the severe stage of dementia (7d) with similar symptoms to your mother for the past 2 years. She has, as far as I can see absolutely no Quality of Life, which the Home agrees with. Every day I pray her journey will soon come to an end,and she will have a peaceful quick end, so I do understand your feelings and I often feel I can't stand another day of watching her as she is.

During the past 5 years she's had quite a few setbacks and 2 years ago when she was losing weight dramatically and very weak the manager assured me she wouldn't be around in 12 months. Yet 2 years later she's still 'existing' as I call it, having had several setbacks and recoveries over that time.

Despite not being able to recognise food or swallow unless constantly prompted, the Home is very good at managing to feed her, so her body can manage to cope with those emergencies.

She also has heart problems, for which the Dr stopped medication 2 years ago and she hasn't restarted yet her heart problems have also stabilised.

Sometimes I think because of the severe stage she's at, totally apathetic and non-responsive, with no worries or stress, with generally good physical health otherwise that this period is lasting longer.

I'll stop there but just know you are not alone with your feelings.

 

[ClaraSais]

Ps.

Ps. It's delayed grieving, that's what they call it. I feel like I can't move on, like I am in this twilight x

hi
Thank you so much for your comment, I am so sad that you are going through this too.
It's utterly horrible and I wouldn't wish it on anyone, I am glad she is not in pain, and she had a very vast imagination so I am hoping it's nice where she is. She has lost so much weight, just skin and bones. Everytime I see her I cry and I know I shouldn't but it hurts so very much as you can understand.
It's bittersweet really, I was just writing up the chapter about my grandmother's death the night before I heard from the CH and Dr.
Hugs x

 

[lemonjuice]

Ps. It's delayed grieving, that's what they call it. I feel like I can't move on, like I am in this twilight x

Absolutely. Although I've read it as 'anticipatory grief'.
But you're right we're in limbo, not able to move on and certainly when I hear of other people who've lost their LO I can find myself envious because then at least one can 'move on'.
We've lost our LOs already. That's certainly what I feel. Especially when I've been to talk to her about the birth / anticipated birth of her great-grandchildren. She didn't react in any way and it broke my heart. She no longer has any connection to a family which for her was everything to her after she retired. She was 89 this year and I've been thinking she's never make the next birthday since she got to 80.

 

[ClaraSais]

Grandbaby Daughter

Yes - mum loved children so much, she was a childrens nurse for Barnados and Guys Children's Hospital. I feel like shes been forgotten about by everybody, her family (apart from me), society. She would have lived for the sweet baby daughter I have. And I can't ask her anything. I felt so upset when everyone used to talk about their mums supporting them at antenatal classes, I felt envious too. My mum is physically strong - it's been so long.

Absolutely. Although I've read it as 'anticipatory grief'.
But you're right we're in limbo, not able to move on and certainly when I hear of other people who've lost their LO I can find myself envious because then at least one can 'move on'.
We've lost our LOs already. That's certainly what I feel. Especially when I've been to talk to her about the birth / anticipated birth of her great-grandchildren. She didn't react in any way and it broke my heart. She no longer has any connection to a family which for her was everything to her after she retired. She was 89 this year and I've been thinking she's never make the next birthday since she got to 80.

 

[Careforme]

I am so so sorry to hear you are going through this with your mum. It is heartbreaking so very much.

I lost my mum four weeks ago. She was only 65. She had Alzheimer's for eight years and diagnosed epileptic last year. I can completely relate and empathise to what you are going through. My mum was my best friend we did everything together and our family are close the four of us.

I just had a bit of meltdown earlier this evening in tears. Why did this have to happen? And how much I yearn to see mum.

I have continued reading on here as it gives me some comfort but extreme sadness as I had sat through what you are going through just now. I wanted to let you know I think of you and your mum and I know I do not know you. I feel so sorry. So sorry that our loved ones can be taken like this.

I haven't yet had any children with my partner and time has never seemed right. How much I wish for my mum to be here when I did or do. She would have been brilliant and it all just tears me apart.

Please stay strong for yourself and especially your wee mum. She will be so proud of you and the comfort you bring to her.

Take care and god bless x


Sent from my iPhone using Talking Point

 

[ClaraSais]

xxx

Sending love and hugs xxx

I am so so sorry to hear you are going through this with your mum. It is heartbreaking so very much.

I lost my mum four weeks ago. She was only 65. She had Alzheimer's for eight years and diagnosed epileptic last year. I can completely relate and empathise to what you are going through. My mum was my best friend we did everything together and our family are close the four of us.

I just had a bit of meltdown earlier this evening in tears. Why did this have to happen? And how much I yearn to see mum.

I have continued reading on here as it gives me some comfort but extreme sadness as I had sat through what you are going through just now. I wanted to let you know I think of you and your mum and I know I do not know you. I feel so sorry. So sorry that our loved ones can be taken like this.

I haven't yet had any children with my partner and time has never seemed right. How much I wish for my mum to be here when I did or do. She would have been brilliant and it all just tears me apart.

Please stay strong for yourself and especially your wee mum. She will be so proud of you and the comfort you bring to her.

Take care and god bless x


Sent from my iPhone using Talking Point

 

[Chettle265]

I came across this quite by accident but it rings true and felt the need to register so I could reply.

My father is also in this state which could be considered 'final', having suffered from vascular dementia for 5 and a half long years after a series of strokes. He's recently become bed bound due to level 3 sores, and I would say that he's approaching the end because of his physical state but I've said that so many times that I don't bother any more as I'm sure you feel too.

I too have a young baby, 9 months old and is my raison d'être, but it breaks my heart to know that his grandpa will never really know him, and there are no other grandchildren so was his only chance to experience it. I can fully sympathise with your limbo state, but I'm of the same opinion of one of the posters who said that we have already lost them. I have lost my dad to this crippling disease and can only pray that his care programme keeps discomfort at bay in any way possible for his body, which somehow continues to keep going. We are lucky in that he's in a wonderful care home and has been for a couple of years, although it's extremely expensive.

My main reason for posting though is to ask more about your mothers book, my dad grew up in West Sussex and we frequently use(d) his childhood memories of the war and his songs to get some level of conversation from him. Did you find this helped with your mother? I'm interested in reading more about it and also which part of Sussex you're referring to. Both my parents spent their childhood there.

In many ways it's helped me become stronger, but I also feel robbed in so many other ways. He had his first real stroke when I was a few months shy of 30 years old, coincidentally when I first got together with my (now) amazing wife and my life started. I feel like his disease has robbed him of witnessing my marriage and his grandfatherhood and my wife didn't even once know the man he was. We lived with my mum to help with his initial care before it got too much, but if there's one positive then I'll say this: looking after a dementia ridden patient prepared me for baby life so well, and for that I'm grateful, although dad never made me get out my chair because he was crawling towards a plug socket.

It also makes one cherish any small moments of laughter or happiness from an otherwise anxious patient needing round the clock attention. I was able to share many beautiful moments with my dad before he moved to the home,particularly singing his childhood songs with him that I was able to play on the piano to him.

I didn't mean to spill out my life story here, I really just wanted to ask about the book as I'd love to know more.

 

[whileaway]

Hi everyone,
Wow, it's been four years since I last posted on here.
My mum is still going, I don't know whether she is in the late stage dementia or end of life, the doctor called a couple of weeks ago to state that her condition had detoriated quite badly since January. She is now bed bound, no longer walks or talks or recognises me and I didn't realise til recently on little bits of pureed food as she can no longer chew. Just lies there not moving. I took my baby daughter to see her and she barely opened her eyes. Shes' 85, it's been 5 long long years, I can't stand it like this. Is it end of life??? CH said that they had another lady like that for 18 months, I don't think I can bear it. I feel guilty but I wish she would pass, what kind of life does she have, if that's what you can call it????
My dad unfortunately had a stroke which has left him disabled and with limited speech in August 2015. He is also stuck in a care home although we want him home but no care home covers our village.
I also wanted to mention that I am writing up mums memoirs/book about WW2 in Sussex and trying to get it published. It's been so so hard as it was scattered all over the house and I have been trying to put it together in some kind of order.I can't post the link yet as it won't let me but I will try a separate post about it later, it's called And A Nightingale Sang

Love to you all, I hate this disease

I loved your facebook entries, and that is how you must think of her. How awful the last years are for you- and yet she might be in some kind of bliss. My father is late stage, yet himself, essentially. I can't take the thought of him being utterly isolated in his unconscious, as your Mum is. But you are doing something wonderful with it. Knitting back the unravelled life- and everyone can read the book of her and you.