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.

I cried more after my cat died than when my mother did, which sounds horrible but is the truth. I felt relief but also a kind of hollow numbness. I'd been through so many years of grief and tears by then, pity, love, sadness but also guilt because she and my father had moved away to the coast years before her dementia and I was only able to visit once a month. Wishing you well OP. Its hard and there's no wrong way to feel.

This is all very familiar. The fact the doctor has prepared anticipatory meds suggests she may be sadly on her last few months . This is very upsetting but will allow you to prepare. We had this with both our parents in late 80’s/90’s and really it is kinder to let them go with dignity. Mine suffered so much pain and distress, after each hospital episode we hoped for improved health but they just got worse. Care home is last resort but is better for you as you will need to install wet room/wheelchair access/overhead hoists etc. at least in a care home they are surrounded by people and the care staff were lovely at Mums. They had volunteers that went in and entertained them . As long as everyone continues to visit regularly your mum will be ok. It was so sad seeing those that never got visitors. It’s a sad fact of life and your mum wouldn’t want you spending the last years of her life so upset and struggling. I felt release and relief when mum died, to see them being kept alive with loss of dignity is heartbreaking for them and you too xx

I don’t have any helpful advice but wanted to send my love. My darling father recently died. He was in a nursing home with dementia. Bed bound, doubly incontinent but still able to recognise immediate family. It killed me to see him so diminished and was killing my mum losing a little more of him every day.

of course I am sad at his death but I feel like I’ve been grieving him for years. It’s been years since we had a proper conversation or I’ve thought “I must tell him that”. In many ways it was a relief for all of us and he definitely wouldn’t have wanted to live as he was.

it’s such an evil disease and my heart goes out to everyone whose loved ones are suffering.

I’d never heard of counselling for anticipatory grief, that sounds very worthwhile.

I am two years on from my mum's death and your post sounded so so familiar. Dementia really is a death of a thousand losses and the end is so long and so painful for everyone involved.

Pre bereavement counselling may help - talk to your local hospice as a good place to start. What you are feeling is totally normal but difficult for many people to understand.

Looking back now I feel like I grieved twice. For my mum as she lost all those parts of her I loved and all of the things that gave her dignity and independence.

Then again for the person she was before the dementia started. It helped me to be with people who remembered her as the vibrant, warm, wonderful woman she was before.

Now I can look back and see just how heavy a load I was carrying- so please be kind to yourself, do what you can but don't feel guilty if you need a break or to rest. Accept all offers of help and be honest with the people around you about how you are feeling. Some won't understand but many will and will provide comfort and a hug at what is one of the toughest times of your life. Sending you a virtual hug from someone who has walked those hard yards.

op sending love and solidarity. My dad is 8 year's post diagnosis with alzheimers and it has been a very long and difficult journey with more to come.

I'm glad you are thinking to take a look at the grief counselling recommended above and that you have already made some adjustments re the time commitment reduction.

To be honest, the last 5 years or so of my mother’s dementia were so pitiful (she’d had it for around 15 years by the end) that it was a relief more than anything when she finally died at 97. I knew her former self - intensely private and fastidious - would have absolutely hated what she’d become - a pitiful wreck, doubly incontinent, not recognising any of her family, unable to hold any sort of conversation.

So although it was sad in a way, we could only be glad that she’d finally been released from such a pitiful existence.

oh my. We are going through exactly the same thing! Even with the 'difficult DF' and having to manage expectations. I also have to psych myself and plaster a smile on when I see them. I live about 10 miles from them, but what with working and helping one of the DC negotiate mental health issues, supporting my DH with his own DM and her hospital visits, I have had to reduce contact time with my own parents...there just isn't enough time in the day. Fortunately, they have got over the disappointment of this and I know are grateful for whenever I manage to get over to see them (usually 2 x week).

I try to take DM out but the thought of loading her into the (wheelchair assisted) car, back out again, negotiating the shops/coffee shop with the wheelchair and loading her back in the car after and out again at home, hoisting her...gah...I'm breaking out in a hot sweat just thinking about it...

Like you, I'm constantly feeling 'not right'...headaches, stomach pains, body aches, sinus issues...i feel like I've got a hotline to the GP atm! And I'm convinced it's all stress related.

The guilt is horrible though. When I do, miraculously get an afternoon to myself, with an opportunity to do some exercise, or see a friend for coffee, I'm eaten up with guilt but I know I'd rather live with the guilt than the resentment.

I am in the process of sorting stuff for when my time comes, so my DC do not have to deal with what I've had to deal with. Looking to move to a bungalow, organising all finances, power of attorney, will etc. And on a day to day basis, I do try to do something for myself...even if it's making sure I've done my moisturiser routine morning/night or treating myself to a posh coffee. Hopefully better weather is round the corner which always makes us feel lighter doesn't it. xx

I found it really helpful. I still fell apart when she died but I would definitely recommend it.

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.

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.

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. 😕

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

@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

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.

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

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’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.

@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.