Dementia and anticipatory grief - I am really struggling with this

[Lilylakeside]

My dear mum was diagnosed with Alzheimer's almost 9 years ago, she has probably had it a good 10+ years as she was displaying symptoms a few years before this.

It's been a difficult journey with mum being diagnosed with advanced breast cancer along the way (medication now seems to be keeping that a bay). Then a couple of falls and awful hospital stays which have worsened the dementia beyond repair, the last fall was summer '25, she fell in her garden, smacked her head against a brick wall, sliced her forehead open, dislocated her knee and ended up with a nasty neck fracture. The prognosis at the time was not good with this type of fracture which apparently kills most elderly people within a month - but she is still with us over a year later.

The fall, the subsequent long hospital stay and trauma from it all has left mum mainly non-verbal and double incontinent. She lives at home with our elderly father and is cared for at home by private carers. They pop in three times a day (at an eye watering cost of almost £4000 per month). As my sister and I live in the same village we go and see our parents a lot of the time, trying to support them as much as we can. It is not easy at all.

At the beginning of this year mum developed some kind of infection (of unknown origin apparently), was taken into hospital, laid in an A&E corridor for 2 days and spent 3 weeks in a dreadful ward where her dementia deteriorated even further but still she pulled through and is back at home.

My poor dear mum who was like a best friend to me, always had my back. She has always been a kind, quiet and gentle woman. It breaks my heart that she has no real quality of life. A private person who now has strangers changing her nappy like a baby. It is heartbreaking seeing her holding on for so long, it almost feels like a punishment (for my parents and us). She is always smiling though and the carers say she is a dream to look after, bless her. She gives no one any trouble at all, the story of her life.

But for the last few years I have been finding this whole situation just too much. At the beginning I would take her out and life was much more enjoyable but the falls, the hospital stays and the natural progression of the dementia have been so stressful and so very sad to witness. The last year or so has been like groundhog day, nothing seems to change, we are stuck in this on-going situation, mum seemingly on her last legs with an infection, illness, hospital stay then she bounces back and we fall straight back into this absolutely miserable way of living. We now have a ReSPECT form in place that states mum is only to go into A&E for a breakage and nothing else, hospital stays are nothing but detrimental to mum's well-being now.

The Alzheimer's society say you die again and again with this disease and it really seems to be the case for my poor mum but the anticipatory grief which comes with it is so hard to deal with, I am finding myself swinging from wishing my lovely mum would just quickly slip away one night in her sleep to feeling the most overwhelming guilt for thinking that way then hoping she lives for a lot longer because I just don't think I can bear to lose her, the one person who really understood me - mum and I are very similar in personalities, I have had a lot of issues with adhd and my mental health, she always understood (my father doesn't, we have a prickly relationships at times). Losing her for real will be like losing my best friend. I can't grieve now though because she is still here in the flesh. Anticipatory grief is a very strange feeling to carry around with you.

I do try to live in the moment with this disease but it's so bloody hard when all I really want to do is wail and scream and frankly simply run away from the whole damn situation, its relentlessness.

I f**cking hate you dementia.

I didn't want to read your heartfelt message and not respond.
I, too have a wonderful mum with Alzheimer's and vascular dementia, in her mid 90s.
She has been in a nursing home for two years and they are taking very good care of her (my dad/her husband died ten years ago)
I feel like my mum has already gone, it's so sad. She doesn't want to be here anymore and I wish she could slip peacefully away.
There is no answer.
It is a tortuous form of grief. My mum has always been a gentle good soul,too and never gives anyone any trouble.

I am so sorry for what you're going through. I lost my mum to dementia three years ag, after years of watching the wonderful woman who raised me disappear little by little. My DH as diagnosed several years ago. I feel that I have already lost him. The person he is now is an empty vessel who bears no resemblance to my beloved husband of several decades.
I've given up calling it "anticipatory". It's just grief. Relentless grief.

Yes, I was going to say what @Justbecauseyoucandoesntmeanyoushould just said. It is grief you are feeling right now. It is an awful situation you are in, I remember it well. The only tiny consolation is that, when her time comes, it won't hit you like a sledgehammer out of the blue, as it would when someone dies suddenly. You will be spared that massive blow. But what you are feeling now is grief just the same. Hugs to you.

I'm so sorry you are in the same position, it really is tortuous isn't it and absolutely nothing we can do to help ease their (or our) pain.

Oh goodness, I am so very sorry you are going through this a second time, it's a truly wicked disease and now the biggest killer in this country so I imagine many of us are doomed to experience this several times during our lives.

You are right, it is grief, plain and simple.

Thank you. I'm sorry you understand this grief also.

Just wanted to say what a wonderful family you sound. It is so hard to watch someone you love in this condition. The grief is as you say for each of the lesser deaths along the way.

Glad to hear that you have completed the ReSPECT form and hospital for breaks only sounds very sensible. Have you considered whether it would be appropriate to decline antibiotics if there is suspicion of another infection. What about no to supplement drinks as her desire to eat and drink naturally declines??

My mother had a stroke from which she recovered quite well, then declined into dementia over the next few years. It was hard to say when it started due to the effects of the stroke, but after around 10 years my father felt he could no longer cope and she moved to a care home. She had a further stroke and by the time she died she hadn't recognised any of us or had any meaningful conversation for about a year. It is absolutely awful to witness - my dad bore the brunt as none of us lived close by. I wouldn't describe my mum as my best friend but we had a good relationship.

I found it a great relief when she finally died - very sad of course, but happy she wasn't suffering anymore and that it was all over. Maybe that sounds awful but I think all the family felt the same.

I miss her and think of her often but am not devastated by her loss. She very much wasn't the person I knew all my life by the end, so it already felt like she was gone in a lot of ways and I had adjusted to that mentally and emotionally.

I think sometimes the waiting is worse than dealing with a death once it happens.

It's REALLY hard. My mum had Alzheimer's and Vascular Dementia and like others, when she did my overwhelming feeling was relief. I wasn't devastated by the death, it felt like a blessing. My mum had 'gone' years before, she hadn't known who I was for around 5 years.

Also, in the last 18 months of her life, I had the call so many times to say she wasn't going to last the night but then she'd rally again. It was a rollercoaster!

One thing I really struggled with after she died was dealing with other people's sympathies. You know, "I'm so sorry" "how terrible" "oh it must be so hard" when really it wasn't at all, as I'd grieved a long time before that. I almost had to fake it to make others feel more comfortable, so weird.

I am so very, very sorry. I have gone through very similar. The anticipatory grief is horrendous and not something others can easily understand.

The only suggestion I can make is to look at live in care. It may end up cheaper than the three times a day option. There are various ways agencies do this so one might not suit or be more expensive and another might be perfect. The carers mum had are still close friends and were wonderful.

Feel free to pm me any time.

It's so very sad. My mother had dementia and I felt the same. In the end, she contracted pneumonia and died but she had it a few times before her death. I felt relief when she died. She herself was ready to go, telling us that she had had enough

I’m so sorry. It is both the loss of your beloved Mum, and having to watch her living a life that you know she would have done pretty much anything to avoid. A horrible limbo. It lasted four and a half years for us and I really thought at one point that she would outlive me - partly because I couldn’t see how it could end as she kept surviving deathbed episodes, and partly because it felt like it drained me so much. A lot happened in that four years, including the decline and death of both my in-laws, and I know I wasn’t the daughter-in-law I would have liked to be for them, because I chose to make my mum (and my poor son who was doing A levels and university) the priority.

I dealt with it by just living in the moment. If I thought about it going on any longer I despaired, so I just stopped thinking mostly.

@Lilylakeside I am now the other side of this - my Dad died three weeks ago after almost 9 years of dementia. The anticipatory grief is terrible but I would caution against expecting her death to be a relief - it won’t necessarily be. I was sure Dad’s would be, partly because it was so awful seeing him so reduced and partly because it felt like the pre-grieving was almost front loading if that makes sense? But I haven’t found it a rellef at all yet. It’s been just as bad as mum’s death and, in some ways worse, because there’s the adjustment to having no parents left. So please do try and make sure you have as much as support in place for you as possible, both now and when the end inevitably comes.

I’m in similar position, my dear MIL has sadly died from cancer since my mum has had dementia, I have ploughed so much energy into helping my parents that I do feel guilt because I maybe should have attended MIL’s hospital appointments with her, neither of my in-laws understand medical terminology and I feel that I should have helped them more. Same with my dc, they were young teens when mum was first diagnosed and young adults now, I feel mum’s disease has overshadowed their young lives because the stress from almost a decade of this has made me very unwell (I have my own health issues which have greatly exacerbated over the last few years).

It is relentless and I just hate what this does to everyone.

I’m so sorry for your loss

I think I may feel the same as you, not sure if mum dying will offer me any relief because I’m still so angry at this disease, I’m angry at my dad for making this journey a lot tougher than it need be (he’s a very difficult man at times), I’m angry that the stress from trying to keep my parents lives afloat has had a very negative affect on my own health and I’m not sure all these feelings will simply float away once she’s passed because I’m angry still. Angry that my friends have mothers still alive and well and they can pootle around garden centres and have coffee with them and I’ve not been able to do that for years. These friends mum’s still call them by their names, my mum doesn’t even know who her own children and grandchildren are.

Yep @Lilylakeside that's exactly how I feel - SO cross at all the f*ckers still walking the earth perfectly healthy being dickheads when my lovely Dad has had to go through this. Quite teeth-gnashingly so!

I'm really sorry, everything you say totally resonates with me too. The long drawn out loss of DF who I adore, the wisest most fun loving person I have ever known. He is still there a bit, in a care home, and visiting him is taking a lot of my time and energy and I have had to let friendships slide over the year he has been there. DF, DM and DC have to be my priority. Most of the time I put it out of my mind because it's too huge and awful to face, knowing my beloved dad is gone. He's still alive and I can't believe we'll never talk properly again.

It is an awful disease.