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?

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).

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

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

@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.

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.

@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.

@BlueRaspberry7

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

@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.

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.

Sorry I would suggest respite care (and offer to help find it) and would hope that it would just continue. I agree that it's pretty extreme that she is doing this bit I don't think you should have to.

I doubt OP "makes" her step mother, just because step mother does it then it doesn't mean OP has to. Plus l would imagine SM doesn't have to get up for work / small children and OP might

If he's previously gone into respite care when she's away for a few days, why is that not happening this time? Is step mum worried that it will show up his decline? Does she want to get across to you just how difficult the regular care is now?

I would be concerned at the risk of you not being able to get him up again if he fell.

No one should be guilt tripped into caring for a seriously ill parent.

@HolesinthegroundIt’s quite hard to get short term live-in respite care. I am calling around and visiting homes in my area to see if that’s an option. they live nearly 90 miles away from me so I’ve suggested him staying closer, where I can visit him daily while knowing he’ll be safe.

@WhatFreshHellisThese I’ve chosen not to engage with that @minnienono judgemental comment. This is a really painful and difficult time for my dad, step mum, and myself as his condition steadily worsens and we try and figure out a plan - and I’m not entertaining insensitive comments.

@BlueRaspberry7 totally understand, l thought that might be your strategy. I couldn't help biting back as l thought they were judgemental, obnoxious and generally out of order

Good luck with it, thinking of you all

@WhatFreshHellisThesethanks for that, I appreciate it. A bit of kindness means a lot when you’re going through an awful time

Maybe possible if your dh is there too. It will probably be chaos, especially if he isn't continent. I wouldn't expect much sleep.

Having DH there makes it feel much more manageable. For emotional support too on the journey home.

Please don't say yes. If he's been in respite before, he should go again. If SM is getting to the end of her tether, the family should be exploring permanent care. It's an awful thing to go through and SM is probably acting heroically against all the odds, but when our parents insist they can manage when they can't, it's very normal for us to have to pick up the pieces.

None of it is easy - finding care isn't easy, funding it isn't easy, getting the person and their carer to accept it isn't easy. But as the adult children, we have to decide what we have capacity to do without taking over our whole lives and set our own clear boundaries or our lives will be utter misery. I have had some horrendously difficult conversations with my parents and in laws but it has enabled me to actually give a lot of support because I was able to tackle the worst of the denial and resistance. Use this forum - and particularly the Cockroach Cafe - to help you work out what is reasonable for you to offer and then stick to it..

I wouldn’t. October is a long time away. Easy to get drawn into caring and doing more than you should. I think respite care is more appropriate.
And your DF probably needs an assessment of current care as it sounds like your SM is only just managing.

I'm surprised it wasn't a given at the start. Would your DH really ever have stayed home and left you to deal with your dad alone?

Your mum needs a break badly, I imagine. It's the least you can both do.

ETA that your mum will need to accept that things might be different in six months time, though. Say you'll do it if he's in a similar condition to the one he's in now. But she needs to consider a back up plan in case his condition changes.

It's there a reason that he can't go into respite this time? Is it availability? Money?

It might be that respite care is not available.

I organised (so I thought) respite care for my mother when I was having a planned operation on my shoulder. We had carers coming in through the day for mum, and I was also my husband's carer - he didn't have carers. (He was compos mentis, however.)

At the last minute, social work told me that there was no availability - someone else needed emergency respite.

I just had to suck it up and hope that I'd manage. (I have no siblings and no children of my own. DH had an adult son and daughter, but there was never any respite help for their father available from them.)