Alzheimer's, anticipatory grief and the very long goodbye

[JustJane73]

It's so depressing and utterly exhausting.

My dear mum has Alzheimer's. She was diagnosed back in 2018 and from that time we obviously knew she'd never get better. The first few years weren't too bad. Sadly she already had a pacemaker due to heart issues and was bent over with osteoporosis, this has only worsened over the years.

She is now in the advancing stages of the dementia but thankfully stays her same kind, smiley, joyful self and still knows who we all are (but it is starting).

Last year a breast cancer diagnosis blindsided us and I thought she was on borrowed time then but the medication is keeping it at bay and even shrinking her tumour. The breast oncologist is happy with everything.

Sadly, two weeks ago she took a fall and alongside several smaller injuries she has fractured her neck. It was all very much doom and gloom in A&E and I thought she was a on her way out then but a two week stay on a ward and we are now told she should be ok if she keeps her neck brace on for a further 6 weeks. We are now trying to get her discharged but as she will need a care package this is taking forever to arrange so we are really not sure when she'll come home. It's a nightmare getting any answers from staff at the hospital.

I fear this is the start of the end though. I just can not see how her poor, frail 82 year old body and mind can put up with much more.

Every time we face a set back I fall deeper into this long goodbye, this anticipatory grief. It's so draining. I am so depressed, so low and feel rotten every day. My decades long IBS is in overdrive, I have a poorly stomach every day, feel nauseous every day and really rotten. I just want to lay in my bed and sleep all day long.

I hate dementia it is truly wicked. I despise what it's done to mum, my poor dad and my sister and I. I hate the thought of losing the one person who always had my back, my lovely mum who I class as one of my best friends. I sob every time I think about her.

It's been such a long drawn out pain and it's still not begun. We've still got the 'proper' grieving to face one day.

How do you push yourself through the dark days when you know what is to come?

Although she looked so frail after the first stages of Alzheimer’s, my mother’s physical health was very robust, which is why, although her dementia was already pretty bad when she moved to a care home at 89, she went on to 97, despite e.g a broken hip at about 91 - so often the beginning of the end at that sort of age.

I had never expected her to last more than about 3 years in the care home, where she was self funded. So thank goodness my sister, who had P of A, had the foresight to take out an annuity to cover the difference between her income and the fees, until she died. Of course we had to supply all sorts of info to the annuity co., medical info, family history, etc. so that they could make an educated ‘bet’ on how long she’d live.

DSis worked out that we’d ‘broken even’, at around the 4 year mark - she went on for another 4. But by then she was in such a pitiful state, doubly incontinent, etc., that an earlier release would have been much more merciful.

None of us could truly be sad that she’d finally died. TBH it was a relief that it was over for her at last.

This is going to probably sound harsh but I urge anyone to do a living will with details about treatment
if I develop dementia I won’t be having treatment for cancer etc, just pain relief/palliative care only
people leave it too late, I did mine at 38

I very much identify with this. It’s a terribly cruel illness, cruel on the person and cruel on the close family around them. I’m sorry you find yourself in a similar position to me. The anticipatory grief is very real and I struggle with it a lot. I want to remember my mum as she was, not as she is now and I worry i won’t be able to do that

Sorry to hear this OP. Following as I’m going through similar with my Dad. My mum is struggling too now. It’s just so difficult.

Dh and I added a paragraph to our Health and Welfare Powers of Attorney, that goes roughly:

‘If I should develop dementia, or any other condition where I am unable both to care for myself, and speak - with full mental capacity - for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

I truly hope this doesn't sound callous because I loved my wonderful mum so much..but I'm glad she got a cancer diagnosis about 8 weeks before she died..
It meant when she started to rapidly decline, started moaning and stopped eating we were able to discuss 'end of life' care..
Oromorph, then a syringe driver and comfort..
She died quickly and I was by her side for the end...
I'm truly glad she didn't waste away slowly...
But I miss her so much

I’m sorry you are going through this. It can be really exhausting. I don’t know what to suggest except try and take it one day at a time and know you are doing your best 💐

100% agree with you, after watching my mum struggle so much with this wicked disease I will do the same.

We have a respect form in place for mum which includes a DNR. I would want the same for myself.

I am so sorry you are on the same journey as us. I fear the same thing, I am starting to forget how my lovely mum was, she loved fashion and was always so stylish and vibrant. She is a complete shell of the person she used to be. I make myself go through photos of better times but it's heartbreaking.

I totally understand, absolutely.

When mum got the breast cancer diagnosis last year (which was a late stage diagnosis) I actually convinced myself that it was going to be the thing which took her rather than getting to the end stages of the dementia and as much as it grieved me, I made peace with myself over that, I thought 'At last' (I too hope that does not sound too callous). It sounds dreadful but that thought was out of pure love for her, I wanted something to take her quick, I really can not stand the thought of watching her being taken bit by bit, month by month by Alzheimer's but as physically frail as she looks she must have a strong will to live because she keeps going, pushing through all of these diseases and ailments.

It's cruel though rather than anything positive.

I am so sorry you are going through this too. It's so hard not just watching the sufferer go through this but their partner too. My heart breaks for my dad, he really struggles with it all, emotionally rather than practically.

I totally understand.. Mum had (probably stomach cancer..) but we as a family didn't want more tests because we wouldn't have wanted her to have invasive treatment.
What it meant was she could have pain relief.. eventually morphine..
Without the diagnosis I'm sure she would have lingered through distress and pain without anyone one realising anything was causing her to stop eating and us constantly trying to tempt her with food...
I'm truly sorry that you are going through this..
The overwhelming feeling of knowing Mum was near the end (x nurse here and only went through it with my Dad 18 mths previously) was relief...
Unfortunately Mum's Alzheimer's had changed her from being wonderful, kind, caring and loving into an anxious and sometimes quite nasty and violent person..
My Mum wasn't her anymore...
But... just before she went on the syringe driver as I was leaving the room.. she said to my brother..'that's Marylou.. I love her' one of the last things she ever said... I'm crying now.. Alzheimer's is so so cruel..to all of us...

Oh goodness, that really brought a lump to my throat, it would have made me weep too. Dementia is so damn cruel, no one deserves any kind of suffering but this disease really is something else.

It's only when you are going through it yourself with someone you love do you understand and have such empathy with others who know exactly what you are feeling...
Sending so much love to you and your family...x

Mum seems to be going down hill, yesterday she had a 'funny turn' according to the nurse and they have had to put her on a drip for the rest of the day.

She looked awful when we first went in, really exhausted but she bucked up after a while. My best friend visited too and that seemed to really cheer mum up, she has known her since we were kids at primary school.

Sadly the lady opposite mum died the day before, the lady next to mum said they had seem the whole thing, she'd had a massive fit, vomited lots of blood and then suddenly passed, she said it was awful and she can't get it out of her mind. Mum is struggling to communicate now and I worry she has seen this all and is scared. We just want her home now.

I'm very sorry for your mum... and for you too...x

So cruel keeping them alive like this - cruel for them, worse for the people they’re supposed to, or once did, care about.

I so agree with you..but...
My brother's and I saw almost our whole 'inheritance' disappearing every month in care home fees.. (Mum and Dad had nothing growing up and used to say to us that we'd be okay when they die.. not me being greedy)
We all came to terms with it all being used to keep Mum safe, warm and fed.
Imagine if we could have ended it for her..
Would it appear that we ended it for ourselves?
It's a terrible dilemma...

It is a separate issue, but my mum would have been devastated to know how much of our inheritance went on her care home fees. A private dementia specialist home for six years is not cheap.. She was very proud she had money to leave us all - little did she know..

Absolutely agree.. but Mum was well cared for when we couldn't keep her safe...

Bottom line is this is all that matters.