Having parent with dementia means regular waves of grieving

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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 might take a while, Yosaffbridge, but sooner or later the dominant memories will be the good ones of health and heart ❤

So many hugs to you all. @51Jessicabrassica - please please reassure yourself that your dad hasn't forgotten you because you are unimportant, it's just that those memory circuits of his brain have gone. It's such a horrible disease.

Thank you all for your kind words and for sharing your stories, it has helped more than I expected 😊

It really is just dealing with the current situation then getting the wind taken out you when a new deterioration arises. I bloody hate that.

Also trying to shut down the hopeful part of me that still sometimes expects that she will surely come back a bit. She would be a very involved granny if she could. She would have drove me mad! I'm sorting childcare for going back to work and I've just found it so so sad as she always talked about retiring and watching her grandkids. The one person after DP that I should be most comfortable with watching my son and she can't be left alone with him. That's an extremely upsetting part for me.

sprint so sorry you are dealing with this. As CMOT says, the long running threads on the elderlies board offer lots of support, advice and a good laugh every now and again on dark days.
Also, admiral nurses can help and advise, carers association etc- your dad will need support, and theses folk will have seen it all before .
Practically, attendance allowance- non means tested can help pay for taxis, gardeners etc.
You are so right in the fresh waves of grief🌺🌺

yes waves is how it is - every time the disease progresses there are more. Mum is 72 and it has been the last 18mths or so that it really got a hold going from mild to severe in that time. She has vascular dementia. We get glimpses of Mum still but the confusion around things like going to the loo, making even a cup of tea (just no longer possible quite honestly) make it desperately sad. Highly independent, highly intelligent Mum of 6. I find myself crying now even thinking about it. Very emotional time

I saw my DF deteriorate with dementia and we finally lost him nearly 3 years ago. It was a blessed relief in the end.
To see a healthy ex company director in that way was heartbreaking.

Someone said to me that dementia is called The Long Slow Goodbye. It’s certainly what it feels like.

I got lots of support from the elderly threads.

I can’t offer you much other than a big sympathetic hug.

Thank you everyone, I will look at the elderly threads. Sometimes I can't face reading or talking about it, and other times it's helpful. Either way it's emotional.

We've been going through this for a number of years, escalating to violence two years ago which saw my father sent to emergency, then social worker would not allow him home unless there were two adults in the house (which wasn't possible), so he went into full time care.

Honestly he'd been deteriorating for a number of years before that. Mum has been grieving. Wanting to have him at home, feeling guilty for him being in care. The place he's at has put it very well for her - anyone can be his carer but he only has on wife.

I've been trying to get mum to understand that the initial specialist high care area he was in struggled with his anger and they were experts. They had burly security guys to help when he was aggressive. They were scared of him and they were experienced with dementia. Aggression is common in people with dementia. The people looking after him only do it for 8 hour stints, then they get a break. He's now in a lovely secure home. If he was at home he wouldn't be secure, mum wouldn't be able to go out as he was very attached to her and wouldn't accept others if she was out, he didn't do well at specialist dementia respite care - again aggression, tore the automatic gate off the mechanism when he saw a car similar to mum's drive past etc

So I think it was a good thing that he went to care while he was still able to remember things, even if very limited. It let him settle in before deteriorating too far it being frightening and unfamiliar. In his lucid moments he was furious. They were very limited. Now he's deteriorated further he really knows no different. In terms of care he has qualified people looking after him 24/7. He's had falls, stumbles, off days and they take observations (bp, temp etc) really frequently. He had an accident that resulted in a visit to emergency (was actually in coma state for a few hrs). Hospital were fantastic and have a referral service where when people over a certain age are admitted to emergency aged care is notified. Because the home he's in is government run, the aged care lady saw his name and knew him immediately. She'd seen him at the home just that week. She and the registrar were fantastic. They came down and were able to advise drs of his normal baseline as well as prepare for one on one support when he was finally moved to a ward as dad is a wanderer and does not stay still.

Going through it, I'd say start working on plans now. It's a progressive disease. It's easy to not want to deal with it, which was the track mum took. When it went to hell in a hand basket, it was next to impossible to get help. We basically had to engineer the circumstance to get him admitted to emergency the first time, then mum had to be tough and say she couldn't look after him at home, which forced the hospital to admit him. She tried in the preceding weeks to get him into hospital so they could do an assessment, but they didn't have capacity. So entry via emergency was the only option.

Mum has struggled. It's the loss of a relationship, a loss of a future, a loss of a partner, guilt at not looking after him at home. It's hard. You grieve the losses and new ones always come up. Dad is close to non verbal now. Hasn't been able to hold a conversation for a long time. But also now can't communicate pain, needs etc. Just remember it's a progressive disease, they will never get better. Mum has taken a long time to come to terms with that.