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

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

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.

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.

Thank you everyone for your kind and helpful replies.

My heart goes out to all of you and anyone who has or is currently experiencing the fallout which comes from such a nasty, evil disease. I wouldn't wish this on anyone.

We have viewed several care homes this week and none have felt right or even remotely nice tbh. It is actually breaking my heart going to view them as they truly are God's waiting rooms. I can't stop thinking about all those poor people just lying there waiting to die.

It feels never ending and the stress comes from all angles. A couple of the carer's started running each other down yesterday (long story which I need to get to the bottom of but it's another stress we just don't need).

Mum's left hand became swollen at the beginning of the week for no real reason, I called out the new GP who was lovely, she agreed that mum is only to go into hospital if she has broken something and everything else is to be managed by the surgery and she has re-written the ReSPECT form the previous GP had poorly filled out. The swelling has become a bit worse over the last few days with two pressure sores on mum's elbow now so we are now waiting for the nurses to come by.

On top of that the GP prescribed a big bag of 'anticipatory' meds and has registered mum with the hospice nurses for when the time comes which is so bloody depressing and has had me crying all week.

And yesterday I had one almighty breakdown when my anxious rescue dog torn up my best wellies (straw that broke the camel's back I suppose). I loved those wellies lol!

Hey-ho, on with another shitty day in paradise.

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.

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.

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 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.