Parkinsons and LBD - through the night care

[BlueRaspberry7]

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?

If you have to do it, make it clear that you will call an ambulance if he falls and can't get up.

@Saraclarano, it wasn’t a given as we also have children, pets, live a 2 hour drive away, and both work full time. There are several moving parts to consider.

Can you please share your experiences of caring for a parent overnight with Parkinson’s and Lewy Body Dementia? Do you have any practical advice to share?

That seems to be the best option.

@PermanentTemporary thanks - yes that was the stipulation in place when my stepsister stayed the night with him recently. He didn't fall on that occasion but he did wander off out the building and took her a while to find him.

In my mum's case, it was mixed dementia plus severe osteoporosis. DH had hemiparesis following stroke.

We did have a community alarm with a link to the local fall time, but they couldn't always come out and wouldn't lift if there was an injury (understandably). When that happened, it had to be an ambulance.

An ambulance didn't always mean admission to hospital.

A carer advised me to buy a baby alarm and to set it up in my mum's room so that I could go to my own room but still be aware of what was happening in mum's room.

Mind you, I'd sometimes be woken up at 3 in the morning by "Daaaarling! Where aaaaare you?"

The first thought of those of us with a pair of elderly parents was ‘why no carers? SM is probably telling everyone they’re fine and don’t need help.’

If you do go it might be a good time to get adult social services round OP. That’s not me saying I think you should go btw, if respite could be found that would be better.

You poor love I have been in this exact position. My father has Parkinson’s and lbd. It’s so scary as you love them so much and just want the best care for them.
i had to do the exact same when my mum was admitted to hospital. I was used to caring for dad in the day but the second I popped to the toilet he got up and fell into a wall that was being renovated and put his head through plasterboard. I felt so so guilty as if it was my fault.
There is a reason carers work in pairs. So it’s safer to lift. There is a high chance your dad will fall with the Parkinson’s I honestly feel respite would be the kindest option for all of you. October is a long way away and he could decline a lot in that time. Sending you hugs it’s not easy x

To add my dad went from being wobbly mobile to a wheelchair and hoist lifting in 3 months. It happened so fast so don’t commit to anything so far away

Does he not have a falls alarm? Our local one has different levels, the best one will send people to lift someone off the floor, not just call a relative to let them know. Does he wear pads at night because he would need to? Who would get him ready for bed, including putting pads on? LBD could mean disturbed sleep, acting out during sleep, shouting etc. personally I don’t think you should do it, especially as he has gone to respite before.