Active discussions

Please or to access all these features

Talk
Elderly parents
Original poster

How do you do this? I am just not coping with my mum's dementia, the anticipatory grief and the thought of how I will cope once she has gone.

34 replies

StandingOnaCornerInWinslowArizona · 03/03/2026 08:56

I know that I am so very lucky to have had my mum for all of my 53 years but I am really starting to struggle with the overwhelming emotions from the fall out from dementia, care and old age.

Mum was diagnosed with Alzheimer's 8 years ago and she is coming to the end. She is double incontinent, can hardly speak, has recently started to need to be fed and just sits in her recliner chair all day either sleeping, crying or staring into space.

It kills me to see her like this and has destroyed the last few years of my life (has exacerbated my chronic health issues), it feels selfish to say this but it has, I feel old and knackered as a result. I stepped up to help my parents 6 years ago during lockdown/covid and it has been that way since due to the dementia progressing.

We do have carers in now, since mum became double incontinent last year but it is the constant worry about her (and my dad) and the pain of watching someone you love just ebbing away year after year to now week after week really takes it's toll.

Yesterday I was sat feeding her lunch, which she appeared to have no interest in. She does this thing where she will stare deeply into my eyes and I can she suddenly recognises me, she will smile to start with and then tears will start to roll down her cheeks, I asked her why she is upset but she can not answer so I painfully asked if she has had enough and she nodded whilst slowly crying again - I can not explain enough how that rips me apart. I hate dementia so much, it is such an evil wicked disease. Mum is such a kind thoughtful person, she did not deserve this.

The last few years have seen mum diagnosed with breast cancer, succumb to several infections and fall and fracture her neck last year, each time we have prepared ourselves for the end and then she has pulled through, that's both a relief for she lives to see another day but also a double edge sword thing because she lives to suffer another day also. She has had to stay in hospital twice over the last 8 months and each time she has come out worse, hospitals staff just don't know how to care well for dementia patients. I changed her GP surgery this week as the last one refused to do home visits and mis-diagnosed her with a uti over the phone (which resulted in the latest hospital stay). The new GP came out yesterday and was wonderful and explained so much more than the previous GP and offered up so much more help. She has arrange for a package for me to collect today with all the details of mum's care going forward, it will be a palliative care package with details of the home hospice nurses and a prescription for anticipatory medication, the GP is going to re-write the ReSPECT form as the last GP had not written it out properly which lead to confusion when the paramedics came at the end of January and mum ended up in hospital when she should have stayed at home. Mum is only to go into hospital if she has broken anything.

I have known mum has been heading towards the end of the disease for some time and it has really affected my mental and physical health a lot over the last few years but yesterday made it seem so real. I have been struggling with anticipatory grief for a while but it really has hit me hard, the pain of watching someone who has always been there for you and is now suffering so much just messes with your head. I try to imagine life without her and even in the stage she is now it seems better than nothing - the thought of not being able to see her smile, her lovely face and kind eyes kills me.

I know that I am lucky she has reached almost 83 but I have so much anger on her behalf and such sorrow for myself, my sister and my dad. I know we lose people, it's part of life but my mum was and is always my best friend and I don't know how my life will look without her, she is all I have known. I just don't cope well with loss, crikey, I still miss my dear dog who died 4 years ago so I have no idea how the hell I will cope with losing my mum.

For those of us who have elderly parents we are lucky, I know many who have lost a parent at a young age but it still hurts deeply and having witnessed how cruel a disease dementia is it has left me fearful for old age.

How do you cope with the slow loss of a much loved parent?

OP posts:
Original poster
StandingOnaCornerInWinslowArizona · 03/03/2026 11:02

Justmadesourkraut · 03/03/2026 09:33

Sending support. Dementia is such a cruel illness. My mum suffered for many years, but like your, she had moments of clarity, where I realized that she was still 'in there's. Your description of your mums eyes rings so true.

In my experience there are not many elegant ways to leave this world. End of life care is hugely demanding. I have found comfort however in knowing that I was fortunate - tough as it was - in being able to be with mum throughout, and that she was where she wanted to be, with my dad and me in her own home. I was also hugely grateful to the folks who, like your new GP, or the Alzheimer's Society, got it and were so supportive. I hope that you find similar comforts eventually. (Once Mum had died, I had 5 weeks to plan her funeral. I also found that very healing, as I put together the photo display of her younger years. It was like reclaiming her back from this terrible illness and being able to celebrate the real her, not just to define her by the dementia.)

Sending best wishes to you.

Thank you so much, I am sorry you went through this too, it's the years of suffering which makes dementia so awful isn't it? My lovely MIL died 6 years ago, from cancer, it was a horrible death but even though she had the cancer for 4 years it wasn't until the last 2 months that it really took it's toll and she stopped living well then it came quick and she was at peace. Mum's suffering just goes on and on.

OP posts:
Original poster
StandingOnaCornerInWinslowArizona · 03/03/2026 10:57

Jane143 · 03/03/2026 09:14

This may sound horrible but my mum was the same and I felt relieved when she died. It’s so horrible watching the long decline and when she was coherent she would say just let me go. There’s no ever going to be any coming back from dementia, it’s hideous. I’m so sorry you are going through this.

I'm sorry you've been through this too, it is truly hideous. I swing from wishing her out of her misery to being in floods of tears wondering how I can live without her in my life.

I know she wants to go, when she could talk she would tell me every day she wanted to die.

OP posts:
lllamaDrama · 03/03/2026 09:42

You have been carrying so much, for a lo no time. I’m so sorry for you and your mum and all your family.

All I can recommend is don’t linger on that future - but perhaps find a grief counsellor now. You are already grieving in a way.

I watched the last episode of the new Bridgerton season at the weekend. I was sobbing at the end - there’s a poignant moment between the Queen and her best friend that exactly captures my sadness at losing my mum. We had such fun together and we were so close. She was my best friend as well as my mum.

The truth is your life will never be the same but you’ll find moments of relief and happiness and if you can fight off the depression you’ll find a new kind of life. You’ll find it because you know the best way to honour your mum’s memory is to enjoy the rest of your life, not fall into a bottomless despair. But it will always hurt, and the tears will always be ready to fall - that’s my experience 5 years on anyway.

You’ll find are doing the most wonderful thing caring for your mum, but the last days can be the most hard. Don’t feel bad about leaning on others - professionals, friends and family.

chuggabo · 03/03/2026 09:36

I agree with Jane above. My mother died whilst I was heavily pregnant, so I wasn't involved with her personal care at that late stage. But when the end came it was a release. I had grieved losing her in the preceeding 8 years. I remember speaking to her for the last time when she still knew me, and I see that as when she went really and I treasure that memory. The later times i saw her are ones i dont remember as she wasnt there. Please be kind to yourself however your loss comes to you. You are alive and the world is still turning.

FiveShelties · 03/03/2026 09:35

Jane143 · 03/03/2026 09:14

This may sound horrible but my mum was the same and I felt relieved when she died. It’s so horrible watching the long decline and when she was coherent she would say just let me go. There’s no ever going to be any coming back from dementia, it’s hideous. I’m so sorry you are going through this.

My Dad was the same and the relief I felt when he died was immense.

It is a dreadful disease and I am very sorry you are going through this @StandingOnaCornerInWinslowArizona

Justmadesourkraut · 03/03/2026 09:33

Sending support. Dementia is such a cruel illness. My mum suffered for many years, but like your, she had moments of clarity, where I realized that she was still 'in there's. Your description of your mums eyes rings so true.

In my experience there are not many elegant ways to leave this world. End of life care is hugely demanding. I have found comfort however in knowing that I was fortunate - tough as it was - in being able to be with mum throughout, and that she was where she wanted to be, with my dad and me in her own home. I was also hugely grateful to the folks who, like your new GP, or the Alzheimer's Society, got it and were so supportive. I hope that you find similar comforts eventually. (Once Mum had died, I had 5 weeks to plan her funeral. I also found that very healing, as I put together the photo display of her younger years. It was like reclaiming her back from this terrible illness and being able to celebrate the real her, not just to define her by the dementia.)

Sending best wishes to you.

Jane143 · 03/03/2026 09:14

This may sound horrible but my mum was the same and I felt relieved when she died. It’s so horrible watching the long decline and when she was coherent she would say just let me go. There’s no ever going to be any coming back from dementia, it’s hideous. I’m so sorry you are going through this.

Original poster
StandingOnaCornerInWinslowArizona · 03/03/2026 09:09

Busybeemumm · 03/03/2026 09:03

I'm so sorry you are going through this. It's sounds so tough as Dementia takes its toll on everyone in the family. Could you do one nice thing for yourself today. Maybe have a long soak in the bath or go for a walk. You have to look after yourself as well. I'm sure this is the advice your mum would also give you if she was able to. Wishing you all the best.

Thank you.

Tbh, I have been so depressed recently that as soon as I have a moment to myself I just want to go to bed (although I do make sure I walk my dog over fields and countryside for at least 40 mins every day which helps I suppose).

DH is off this Friday and we plan to go to the cinema but in all honesty I can't be bothered as I know my heart won't be in it but I will go for his sake. I know it's depression and I did try some counselling last year but it hasn't done much to help. I acknowledge it's some kind of grief and I suppose I have no choice but to let it come and go and hope one day these memories of mum suffering will be softer and less harder to deal with - I live in hope that will be the case.

OP posts:
Busybeemumm · 03/03/2026 09:03

I'm so sorry you are going through this. It's sounds so tough as Dementia takes its toll on everyone in the family. Could you do one nice thing for yourself today. Maybe have a long soak in the bath or go for a walk. You have to look after yourself as well. I'm sure this is the advice your mum would also give you if she was able to. Wishing you all the best.