Having parent with dementia means regular waves of grieving

[Sprintfinish]

Mum was diagnosed last year aged 60. It was 10 months of hell convincing her to attend appointments before she finally got a diagnosis. I knew she had it, had known it had to be dementia for a few years. It was still horrible hearing a consultant confirm it, but at least it opened the door to medication and support. Still waiting for the support.

We have ambled on, trying to carry on with life. Mum and dad had always planned to retire at 60, which they did. Dad is now mum's full-time carer. He didn't have the awareness I did of the disease, but he has learned as he's went.

I'm an only child and their only support. I'm my dad's sound board, I'm the one who gives him respite. I'm the one who mostly knows what to say and how to bring mum round.

I'm a new mum and recently feel like the grieving is getting worse. More intense. The grieving has been coming in waves for some time. I feel like now I'm grieving for myself and my son. She always wanted to be a granny, but can't be the granny she would have been.

I try to tell myself we're lucky she's still here, to make the most of her while we can. But it's not her. Everytime she does or says something that's not her, that wave of sadness is there.

Is this how others find it? I have no idea how to deal with the constant sense of grief.

It's an absolute bastard bod an illness. Do you have any carer support for respite for you and your dad?

Of not bod- apologies

Hi OP

I've not dealt with this myself but what you say sounds perfectly normal and reasonable. Everyone with a good relationship with their mum wants their mum when they have a baby, and it cant be easy when she is no longer herself. It's a horrible slow cruel disease so it makes total sense that you will also do your grieving in stages. Sorry you're going through this

Yes. Day by day you lose the parent you know and that's so hard. They are still here but yet they aren't. I clung to the good days and tried not to dwell on the days when they didn't know who I was, but its heart breaking.

I’m so sorry. What a tragically young age to be diagnosed.

So sorry to hear about your mum, as a new mum yourself that must be very hard to deal with so i send virtual support and hugs. My dad was diagnosed with vascular dementia and passed away a couple of years ago now and i also remember the grief i felt everytime i 'lost' more of the man who once was my strong and invincible father. It is a terrible illness that changes the people that you love, my heart goes out to you. The only way i personally could deal with it was with the help of family, lean on your dad as he leans on you, supporting each other. Just go with what the day brings, good or bad and just look for snippets that are familiar, they will soothe her and give you the mum that you know and love (i had endless conversations about the best way to cook roast potatoes!) Remember to take care of each other, sending love x

I’m so sorry, @Sprintfinish. My story is a little different in that my mum was so disabled by her cancer that she couldn’t be the Granny she wanted to be, but it amounts to the same thing. You can definitely grieve for a person before they’re gone.
Sorry, I know I have nothing helpful to say, but I feel for you so much. Big hugs to you. I can only wish you strength.xxx

Thanks everyone, it's nice having people acknowledge how hard it can be. I just get on with it in real life, and people don't always seem to realise what we're dealing with.

I should lean on my dad, but I'm very aware that he deals with it 24/7 so I try my best to hide my feelings. I encourage him to seek out groups etc but it's out his comfort zone. It's hard to know what support we need when not sure what's available.

Gosh that is a young age to be diagnosed which must be difficult. You could contact your local Alzheimer’s Society group to find out what services might be available in your area. Not just by the Alz Soc but also social services and other third sector organisations.

My mum has been diagnosed with Dementia too. Like your mums shes only 60 - it just seems so young. My mum has MS too and hers is linked to that. As if spending her life confined to her chair isn't enough, she now has this to cope with. How you feel is normal. I think about how she'll never be a 'normal' granny - its a devastating feeling. Like you I'm an only child, mum and dad are divorced. Its such a cruel disease. Seeing the changes everyday and knowing its only going to get worse.

OP I feel very much like this - we are coming up to 4 years from DM's diagnosis with Alzheimer's and (as I've found with other periods of intensive grief) it's compounded by being so tired of feeling awful, which in turn I feel guilty about!

I'd say it's very important to take the joy and distraction you can find both with DM and elsewhere in life and embrace that as much as you can. Also pace yourself - don't take on more caring than you can sustain - and I also compartmentalise like you wouldn't believe!

@LIVVI1234 I'm so sorry, that's a lot to deal with. I hope you both have support in place.

@BudgieHammockBananaSmuggler I've spoke to the group and relayed things to my dad. He really needs to be the one to call to get the ball moving, but he is reluctant to get strangers in for respite. Also concerned how mum will react as when stressed she talks about weird things happening in the house. Hard to know what's best.

@mrsmalcolmreynolds I feel it's created a dark cloud over everything. I'll focus on my son and be happy, but then my mind reminds me and there's always that sense of sadness.

My cousin has a son with dementia (early onset due to Downs Syndrome) & says the same things. She's blogging a lot.

Since dementia among the oldies is common on my mother's side of family (not my dad's at all, thank goodness)... I wonder if I can prepare DC for this in some way. Appreciate the good relationships while you have them, I guess.

YANBU I regularly burst into sudden tears. It's very hard. I find just accepting it helps...it is what it is. Nobody can take away the good memories.

Op I am so sorry and what you’ve written sounds caring and totally understandable. Support to all who are or have lived with this amongst family or friends. My lovely old late parents largely escaped this for which I can only be grateful.

See if there is a dementia cafe near by (some are held weekly or monthly), your Dad can take her. It won't feel any different than going for a cuppa for your mom but knowing the people running it are aware might give your Dad confidence to talk and not worry about what your mom says.
If your mom is having hallucinations contact GP for refererral back to the memory clinic, there is medication available for that. My aunt had a patch that was changed daily and was amazing at calming the things she saw at home x

I know exactly what you mean Sprintfinish.

Hey OP. My friend went through this with her dad. She says that when he finally passed away it was devastating but that they had all been grieving for him for a few years and that there was an element of relief as well.

My friend has small children and a baby, and I know she was there for her mum a lot, and I know that seeing the man she adored reduced to the way he became, was a huge sadness.

Have you googled for dementia helplines where you can just sit on the phone and pour your heart out to people who are trained in this kind of illness? With my own, different issues, I've found solace in using the samaritans textline so I would imagine there's an element of relief and supportiveness through ringing a dementia charity?

Do look into respite for your dad and yourself. I'm so sorry you're going through this. Be kind to yourself. I've run out of things to say now

Know exactly what you are saying. I feel that you lose them over and over and you are never ready for the next step. You think you've got it sussed then something happens to remind you that you can never outrun dementia. It's already lurking several steps ahead.

I totally understand. I have a parent with Dementia and it is heartbreaking. They look the same but no longer are the same. I feel like I have lost them when I haven’t. Try and get support and help. I did everything to help my parent but forgot that I needed help too and find it all so incredible difficult. I know deep down that they know who I am and I try and focus on the happy times and the fact they they are not in any pain. I wish you and your family well and hope you can get support soon 💐

I'm in the same boat, almost. When my mum died the extent of my dad's dementia became clear. He has no memories of my mum (his wife for 40+ years) and therefore no memories of me. I am the only person who remembers my childhood and I mostly feel like an orphan with additional responsibilities.
And I am so, so angry about the situation. I'm angry that my children have been denied grandparents. I'm angry that I have no functional parents. I'm angry that we weren't imporant enough for dad to remember. I'm not sure its waves of grief, for me. It feels permanent and non-evolving.

OP, you sound like you're coping brilliantly well in a very difficult situation. Rl support would probably help you and your dad but sometimes getting it in place is insurmountabley hard. And that's OK. You can only do what you can do.

Yep. Been there, done that. It was a relief when she died. She would have hated the person she became. Terrible illness.

I absolutely get this. My mums dementia became apparent when she was in her early 60's and my son was a baby. Everything she lost was like grieving for her - her personality, reading (a huge part of her life and a joint passion), no longer interested in children, when she lost my name, and then when she no longer knew me were some low points.

The Elderly Parents board on here have got me through all of this. In RL there is no one who understands what having a parent with dementia means when you have small children of your own, or who you can sound off to about your mum drying out incontinence pads to reuse. But on there there is always someone who has been there and will laugh/cry/rage with you

This is exactly how it was for me. My dad had Parkinsons dementia for ten years before he died. I starkly remember the day I came to visit and he wasn't my dad anymore. It was heartbreakingly jarring, from that moment on sometimes he would be the dad I knew and remembered, sometimes he wouldn't be there at all. Progressively (it was a slow decline thankfully) the occasions when he'd be himself were rarer and rarer. A month before he died we had a family get together at the nursing home (happily he was only there 3 months, he hated it) and he stood up and held a speech for us all. He was perfectly himself, I cry to think about it, but it was a beautiful moment to hold on to.

He's been gone almost 2.5 years now and I'm starting to be able to remember him as the man he was rather than the lost person the dementia made him. The grief is still there, but it's a sweeter grief now.

I'm so sorry OP. Dementia is an absolute beast of a disease, we lose our loved ones before they're truly gone and it's agonising. Look for those moments of clarity, they will come, your mum will be your mum again. They'll help you through the darker times.

Damntheman I'm so glad to hear that you can now remember the man your DF once was. One of my fears is that my memory of DM will be dominated by these later years even when she's gone, and that feels like a betrayal of who she has been most of her life.