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Elderly parents
Original poster

Parkinsons and LBD - through the night care

35 replies

BlueRaspberry7 · 19/03/2025 12:44

Hi all.

Does anyone here do overnight stays with a parent with PD and Lewy Body Dementia?

My SM has asked if I can stay with DF at their home for a couple of nights when she goes away later this year. He has previously gone into respite residential care when she has gone away.

This feels outside of my comfort zone, as he tends to stumble and fell out of bed just this week. I'm not sure how well I'd cope with that. His condition is up and down but the dementia seems to be progressing at the moment and we don't know how it will be by October.

Do you think it's fair enough to relay that I am happy to come and be with DF for the day, but not to stay for two nights? Or am I overthinking it, and it would probably be ok and manageable?

OP posts:
crumpet · 19/03/2025 20:35

If there are already day time carers they might be eligible for ad hoc night time care too, to be there through the night (with you there also but at least you could get some sleep). And it might be worth investigating on a longer term basis. We were offered this for my DF this week.

rickyrickygrimes · 19/03/2025 20:32

BlueRaspberry7 · 19/03/2025 14:49

@rickyrickygrimes yes she is able to get him back up but with difficulty.

Ah well you can see why she thinks it’s reasonable for you to step in for a couple of nights, if she’s doing it herself all the rest of the time.

Original poster
BlueRaspberry7 · 19/03/2025 14:49

@rickyrickygrimes yes she is able to get him back up but with difficulty.

OP posts:
rickyrickygrimes · 19/03/2025 14:24

@BlueRaspberry7

How does your step- mother deal with it? Is she able to get him up?

Original poster
BlueRaspberry7 · 19/03/2025 14:20

@Hoppinggreen thanks for sharing your experience. I'm sorry your family went through that towards the end. Must say, I completely agree that a bit of dark humour will help get you through dark times.

OP posts:
Hoppinggreen · 19/03/2025 14:12

Sounds like a plan.
The day before my Mum died my brother found her in a state and with no carers due he had to sort her out himself (I was on holiday).
From what he said while he tried to be as matter of fact and even inject some humour into the situation it was very upsetting for both of them.
We even joked (we have very dark humour in our family) that she literally died rather than face that again.

Original poster
BlueRaspberry7 · 19/03/2025 13:50

@Hoppinggreen @HoraceGoesBonkers thank you. I'm now considering going with my DH who is physically strong and has some support work experience, so could help with any potential stumbles or night falls.

OP posts:
minnienono · 19/03/2025 13:21

She’s there all the time, it’s just 2 days! Outside your comfort zone, what about her???

Hoppinggreen · 19/03/2025 13:20

My Mum had Parkinsons and I would have struggled to provide her with care.
You may need to lift your DF and do personal care - how do you feel about that? I think Respite would be a better option for all of you

HoraceGoesBonkers · 19/03/2025 13:17

My DF had a similar long term condition, and had carers in four times a day. I've not done it but been in a similar situation with pressure put on to provide care.

It ended up that the nights were the main reason he went into a care home. My 'D'M tried to get me to provide personal care but I had small kids and I couldn't, apart from just feeling really uncomfortable with the whole thing - I think DF would have felt humiliated too.

It ended up that my DM would phone an ambulance if he'd had a bad night to try and get him admitted, but insisted she didn't want him to go into a home. Eventually the GP stepped in and said he needed residential care, which was something of a relief as DF was getting stuck for hours in ambulances, and it was a long drive to the nearest general hospital.

I wouldn't, personally. There's another thread here on falls at the moment which is worth a read; if he does fall then you're likely to need professional help anyway (is he under a falls support service? Some areas have them).