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.

[StandingOnaCornerInWinslowArizona]

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?

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.

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.

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.

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

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.

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.

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.

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.

To lose you mum whilst pregnant must have been very tough going.

I often think about when mum was last 'mum', it was a good year or so ago, I know realistically we lost her back then. I will think back to those days too, when I would drive her to her day centre and we would listen to music and sing along.

They were sad but equally good days.

Thank you so much.

My mum is my best friend too and that's why it hurts so much as I feel I am losing two people in one but you are right, I know, I need to live as happily as possible because my mum would want that as I would for my dc. I just wish I didn't keep overthinking things all the time, I wish I could just switch off my thinking process.

If only life were that simple, hey?

@StandingOnaCornerInWinslowArizona as you have DC try and be the best version of you that you can. It's so hard and depression with added responsibilities can feel like a bottomless pit. Cherish the memories of your mum as you are already grieving for the mum she once was.

Try not to miss being present for your DC as they need you as well. They also need a healthy mum too.

I’m 60 and lucky to have both parents, they are living in a lovely care home together which make my life so much easier and my visits are now social and fun rather than when they were at home. However I cant cope with the emotional side of any of it so started anti depressants this time last year which have taken the edge off my emotions, don’t rule them out as an aide to help you through this part of your life. Take care of yourself.

I have tried various antidepressants but sadly they have all exacerbated my existing chronic health issues. I would love to find something which numbs me a little but doesn't make me feel awful, sadly I have not had much luck.

Dementia is such a wicked, dreadful way to be. You sound amazing, kind, compassionate, loving and stoical, OP, and I'm so sorry it's such a dreadful heartbreaking thing you have to deal with.

I have no experience of being a carer nor with a relative who has dementia, but i have had a head injury so know how debilitating and terrifying it is when the brain loses control. I think if you are being such a wonderful, caring daughter for your mum, this will be a true gift to her during her final year, and bring her comfort.

Sending huge hugs to you, you sound a wonderful person. ❤️

I lost my mum years before she died. The only emotion I felt when she died was relief that her suffering was over.. I'm sorry this is happening to you. I just try and remember the good times ( there were many) . I don't have any magic words but you are not alone. I'm sure your mum would be grateful for all the love and care you have given her. Look after yourself x

This year will be 8 years since Dad died, but you feel like you’re saying goodbye to a little part of them everyday. Once he’d gone though, I only really remember Dad. I don’t really remember the Alzheimer’s years. Not to say I can’t remember them, I can and do, but it’s like my brain has chosen just to remember Dad as he always was. I still find myself thinking ‘oh I’ll just ring Dad’ at times, when there’s some news or something I know he’d be interested in.
Me and my sister cared for Dad at home for 7 years, before he moved to a home for the last 3 years. So I can imagine the stress on you must be immense having your mum still at home. My sister had a breakdown and was off work for a year. I had dc3 a few months before Dad moved to the home so I think the juggling and distraction got me through it all. I didn’t go on antidepressants as was still BF but I tried to follow all advice I could read online, about being more mindful, breathing exercises, taking regular exercise and getting out in the fresh air for walks, taking in nature all around me, basically trying to be in the moment rather than dwelling on everything. Also tried to change my diet to things suggested to help with depression.
You will get through this time, it’s just overwhelming and never ending whilst you’re living through it.

@StandingOnaCornerInWinslowArizona , I could have written every word of that and my heart goes out to you. Dementia in all its horrific forms is an absolute bitch. I felt like every day I was firefighting but the fires just kept coming with increasing frequency and intensity. Towards the end of my mother’s battle, the last year or so my dad was diagnosed with a brain tumour and they would both be in hospital at the same time often one in London and the other is Surrey where they had lived.
I hope you have support from your family, my brother and his (Christian, what a bloody joke) family utterly abandoned me.
Make sure you have registered with your GP as a carer, a lot of support came my way once I did that. Age U.K. were helpful too. My mother was never referred to a hospice though that would have helped it did with dad.
After mum died, thankfully in the same hospital as my dad for once and we eventually got dad home after a lengthy stay learning to walk again, he came to live with me and stayed there, dying in my home three years later.
Looking after dad delayed my grieving for mum and then when he died it all hit me like an express train. Those 7 years nearly broke me but I found reasons to go on, eventually taking up ballroom and Latin dancing which I credit for saving me and allowing me to let joy in again. My family have been my best and most loving support especially my ever increasing number of grandchildren.
When something good or bad happens I still think to ring mum and tell her and so there are many little griefs along the way. I don’t think you ever get over such a monumental loss, just become accustomed to it and you go forward as best you can for your surviving family and because actually those we have lost love us and they would want us to. X

I think this is the worst time.

When Dad was ill it was the combination of grief at losing him with the guilt at wanting him to die so his pain will be over. Once he was gone it was only the grief to deal with.

Then, after a while, you will remember the happier days not just the terrible illness

I'm sorry you're going through this OP. It is so so hard to witness.

I'm also struggling. DM had a medical episode 4.5 years ago that rendered her immobile and doubly incontinent after being a perfectly normal functioning independent person. Last 2 years, dementia has started, albeit not a formal diagnosis as she (or DF who is her carer) wont attend memory clinics etc but her short term memory is appalling. She knows who we all are atm but I wonder when she won't...

I feel like I've lost my DM already...she forgets literally everything that she's told within seconds and constantly repeats her questions.

It's all so bloody sad and there are days where I wish the medical episode had taken her when it happened rather than her being hoisted into bed/wheelchair/sofa, having her nappy changed 4 x day...it breaks my heart.

But of late, I've had to reduce my time with them both...im finding it so hard...my mental health is suffering, I have panic attacks, anxiety and pretty sure I'm depressed with it all. I keep thinking 'is this all there is to look forward to?' (I'm mid 50s and menopause is not being kind either) it's all on me too as sibling has gone AWOL (2 years ago).

I've no answers im afraid OP, other than to say, you aren't alone in how you feel. I often feel overwhelmed with what's to come and struggle to find joy in anything anymore. 😕

Im very glad the GP was better. Can you register with them yourself and see the same one for your own needs? And to be documented as a carer too as a PP said.

i would say from experience of talking to my own mum, who died a month ago with an eventual diagnosis of dementia, that it could be worth trying to stop yourself asking her those questions like ‘have you had enough’ - though I didn’t always manage not to. If you possibly can, stick to cheerful or at least neutral conversation which I’m sure is what you normally do, or hold her hand and just share the eye contact that you describe. I found that I could get myself into a negative loop with those interactions of trying to name her emotions and come out feeling even worse. But you may not feel able to say anything else in the moment.

I thought I would only feel joy and relief when mum died but in fact I’m very sad and a bit broken, not fit for much. There really isn’t any upside to any of it except that she’s not suffering anymore.

My DM was in a care home for the last 3 years of her life, doubly incontinent, no mobility and very little interaction with anyone around her. Can I suggest that you contact Cruse and ask them about counselling for anticipatory grief. I found it very helpful.

I really feel for you, I’m sorry you are going through this too, it sounds as though your mum is at the same stage as mine and you are exactly where I am right now too.

I have had to pull back a little over the last few months as well, for my own mental and physical health but it’s left me with so much guilt, I was going every day but now only 4-5 times a week which I know my dad doesn’t like (he’s a difficult man to deal with at times). I’m feeling so unwell with daily digestive issues, headaches, perimenopausal issues, hurting all over and I have such an overwhelming depression, I’m getting to the point where I have to literally psych myself up to go to their house (they live just around the corner to me) because the truth is that I no longer want to see the devastation but instead I step through the door, put on a happy face and pretend all is ok then get home and crawl into bed not even wanting to hold any conversations with dh or dc - what a way to live!

I am with that GP surgery already which is why I got mum registered as they are so much better than her previous ones. There is sadly little they can do for me as I’ve tried most of the antidepressants but they upset my digestive issues which makes things a million times worse. I am registered with them as a carer too.

I suppose the reason I ask her if she’s had enough is because I know that’s what she is thinking, when she was verbal she would tell me daily she wanted to die and dad would just ignore her, he didn’t know how to deal with it. I don’t want her thinking that I am not acknowledging how she feels, I know she’s had enough and whilst I try to stay as jovial as possible when I’m there, we listen to music and I tell her I love her etc she still cries a lot and I just know what she is thinking, we were always very close and we are very alike. I just feel that I can’t not acknowledge her moments of clarity.

I am so sorry for your loss, I can’t imagine I will feel much relief either, when the time comes. I hope there is light and happiness for you as time goes on.

Thank you, I will try that today.