Coping with parent’s LBD

[peony89]

Is anyone else coping with a parent with early onset dementia whilst also working and raising children?

I’d love to talk to someone else in my position. I’m in my thirties, DM with LBD is in her sixties (diagnosed 18 months ago and had symptoms for 3.5 years) and my DC are still little.

My DM is in the last year of this.

For us this was how it worked:

First forgetfulness for about ten years. Then there was a fall, which I think in the 1980s would have been the end of her life, because she developed pneumonia.
She was delirious in hospital for four months.

Then she came back out of hospital after four months and the delirium went away for about a year.

Then she became permenantly delirious and we started playing lots of fun games where she would tell us where she was and we would all play along. (like on the set of Downton Abbey or whatever). We read a book call "contented dementia" which was very helpful.

Then after about another couple of years, she kind of forgot how to walk entirely. The consultant in the hospital said that was likely to be it turning into parkinson's disease.

After that she went to a care home and was basically asleep for three months, except waking up for lunch. We filled in a respect form which specifies no more hospital visits and no more antibiotics. If anything else were to happen then palliative care would start, so she doesn't have any more traumatic interventions.

Now whe is awake a bit more and can chat a bit each day. I don't know what happens next.

Sorry, that all feels very personal to describe but I hope it might help you to know, because it's been quite a difficult road for us.

No personal experience but https://www.raredementiasupport.org/lewy-body-dementia/ is really helpful organisation ans has face to facebamd online meeting with ppl dealing with similar

Thank you for this. I’ve signed up for their updates.

That’s a helpful summary, thank you for telling me. I’m sorry you’re going through it too. I hope the calm chats with your DM continue in the coming months/years.

We’ve had a long period of DM being reasonably calm with everything but the last few months, she’s quite depressed and distressed by her condition but is still fully aware of what’s happening to her. It’s awful to see as she’s always been happy go lucky. Sadly, I think it might be easier once she is longer as aware but I’m dreading that as we will lose even more of her.

I feel like I’m grieving someone who’s still with us.

Hi I care for DH with dementia. I have been working and caring for the last four years in a relatively tough job, but now about to give up work as DH requires more support. My experience has been that it has been really tough. LBD is really variable and I do talk to a lot of other carers. Typically though it features seeing people and things which are not there, paranoia, low mood and aggression alongside cognitive decline, so it is difficult to cope with. IME stability is really important. A settled environment and plenty of contact with friends and relatives has a calming influence on sufferers. I also find dance and music groups to be very useful. Emotionally it is very hard. LBD goes up and down. So within hours I have something that resembles the DH I used to know and then two hours later he can be really angry, swearing and aggressive- which he never was normally. Carer wise I was recommended by my LA to use the UKCIL website which has lots of independent carers on. That way you get more continuity of care and they can build a rapport. Time wise I do not know and no-one seems to be able to give me an indication. We are three years in now. Mental decline has been rapid. Physically though he is still very able bodied.