Emergency care plan before setting up regular care plan?

[BlueRaspberry7]

My dad (70) has PD with lewy body dementia. Some context, he and my SM moved a couple of hours away from me to set up her grandkids (who they took legal guardianship of ) in school.

My dad and me have an ok relationship, some tension and judgement over my life choices, and not very much in way of support from him.

SM has been asking recently if dad can stay at our home for the odd week here and there so she can have some time off - otherwise he'll have to stay with his SD (he doesn't want this) or go to an "unpalatable care home ". I explained that a weekend stay now and then fine but we're not set up with space or my full time job commitments to care for him right through the week.

He is coming to stay this weekend, though, and I asked how he's been this week. I'd be keen to hear this group's thoughts on her response:

"Not been a great week. Dad ‘froze’ the other night when he woke to go to the toilet and he said it took him 20 minutes to get out of bed - he literally could not move. He normally staggers a bit but this has taken things up a notch. Not unexpected, as it’s the way this disease progresses but it did give him a fright. For the moment, it’s manageable, but my worry is what would happen to him if anything happened to me. You’d be looking at a care home but there needs to be some thought put in to an emergency care plan, should I pop my clogs tomorrow. Dad said he was going to speak to you about it at the weekend. And, yes, I am going to xx with xx. I hope you have a lovely weekend with all the family. Take care xx"

He's setting off from his house alone in a taxi to the station to catch the train to my local station. I'll collect him at the platform.

SM has given me the taxi company's number in case the driver gets lost trying to find their rural house - as my dad wouldn't be capable of directing them.

Sorry to drip feed. But I'm concerned about whether he's up to managing this journey - is it responsible to put him on a train alone?

What thought are your Sm and df putting in to it? She is best placed to contact social services / put arrangements in place- keysafe, emergency alarm pendant/ poa/ etc as he has capacity?

Sounds like she is trying to abdicate responsibility. She may be exhausted, but it’s her partner.

If your dad is 70, how old is SM? Is she in good health? I appreciate that any of us could die suddenly at any time and it's good to plan ahead, but it sounds like she's trying to dump responsibility for your dad at your door all of a sudden. He may well need a care home in the not too distant future, given his two serious diagnoses and what sounds like a deterioration in his health, but surely this is her/their job, she is his NoK and a care home near her makes the most sense? I don't understand why she's wanting you to take this on.

is it responsible to put him on a train alone?

Honestly, this doesn't sound like the best idea for a man with PD and LBD - ideally he would either be taken by car or accompanied on the journey.

I think it sounds like she is being proactive! She’s acknowledged that if something happens to her he will need to go into a home and it would be best if you knew which home/what finances he has etc. If something happened to her you would be next in line as NOK so it just sounds like she is preparing for any eventuality which is sensible.

I worked as a nurse on an assessment unit at the hospital as student and an old woman with dementia got admitted as the husband had died in a&e. It took forever to get her discharged as none of the children were prepared or knew anything about their wishes. She got moved out to the first available nursing home rather than one picked and prepared for.

To me it sounds as if he is absolutely not fit to do the journey alone. If he cannot be left alone in the house for a weekend, how is he going to accomplish that journey alone? I think he will be extremely confused and I wouldn't bank on him arriving at the right place.

People with dementia often operate 'okay' in their own familiar surroundings, but if they then go somewhere they are not used to, they become far more confused. When he arrives at your house he may wander around in the night, fall downstairs, or try to leave the house. You won't have the necessary set up for someone in his condition - not a criticism at all, you just won't.

In your position I would suggest SM sets up an arrangement for respite with a care home for when she (understandably) needs time off. They will be set up to deal with his confusion and keep him safe. It would have the added benefit that he will have some familiarity with that care home if he needs to move there permanently in future. That is the type of planning needed, not sending him half way across the country on his own.

This has the potential to go very wrong indeed.

His time perception is likely to be unreliable, which will make it hard for him to track where he is in the journey - he could easily miss his stop, or panic that he has missed it and get off too early. What happens if he freezes when he's supposed to get off the train? Do you have a downstairs sleeping are if he can't manage the stairs? Do you have a loo on the floor he will be sleeping on? Does he experience confusion or delusions as part of the dementia - and if so what happens if that occurs part way through the journey?

Your SM will certainly need respite breaks, but this isn't the way to do it.

And she's right that plans need to be made for his future care, but that should be a joint discussion between all of you - not just you and your dad.

@thesandwich like many of the parents on this thread, my dad is in quite heavy denial about needing or accepting any help at all. For the week that they're going away - at my suggestion - she's now looking into somebody coming in to check he's ok / put a meal on for him. But she's looking on local Facebook groups rather than any proper care services, which doesn't feel right to me.

It seems to be at a very difficult stage where he's starting to need help at some level, but they're not sure what that looks like and he feels he's losing his dignity by having it.

https://www.care.com/en-gb/ might be an acceptable but more relevant alternative to Facebook, if you play up the 'housekeeping' rather than the 'senior care' side of it.

My mum had LBD - I would say he needs accompanying. One thing we noticed is that executive functioning, went way before general knowledge. She was able to talk knowledgably about subjects of interest, and would notice things to do with those, way, way after she lost a lot of executive function. Like catching a train or even telling you she needed the loo before it happened went, but she could still tell you correctly what bird was singing or identify a plant.

I don't think your dad is the only one in denial, so is your SM if she thinks he can travel alone for 3 hours, and/or make do with someone 'popping in'. Unfortunately things will deteriorate and it will hit home that more care is needed whether they like it or not. It is a very difficult situation and it does take some coming to terms with.

Updating after a weekend of my dad staying with me,

Thanks very much for all your comments.

My dad did ok on the train I met him on the platform.

He stayed in my DD14's bedroom and she shared with her sister. She made no fuss but there were times it was a bit awkward for her not having her time eg. After showering.

I hosted a big family lunch to facilitate my dad seeing his sister/nieces and nephews. It was lovely but tiring. Dad can get himself showered and dressed but needs every drink /snack made.

He asked what my plans are in being involved with his respite care and care going forward. He and SM have visited a respite / care home near them - a couple of hours drive from me but this is where they chose to live. They have both asked me separately if him coming to stay with me for respite when SM goes away on holidays is an option. She is planning skiing trip and holiday in Maldives without him. I've said to both of them that we don't have the accommodation or set up for this. He keeps asking though, and saying how well this stay has gone. I'm knackered!

He's also asking me if I want him to move closer to me in case anything happens to SM as their relationship isn't brilliant. I'm not sure if he means into assisted living or a car home or what but they're talking about selling their home and downsizing.

They sound confused and it's like they're asking me for ideas and how I'll be involved. I'm stressed and confused. This doesn't feel like it should be my choice / responsibility.

I think they need to set up their respite options near them and keep me updated. Is that fair enough?

Do you think they may be thinking about care costs? Obviously if he stays with you for respite that would be free, but if he were to go into a care home for a week that could cost upwards of £1k.

Yes I think that cost may be a factor in it, but not the whole thing. My dad doesn't feel ready or that it's necessary yet for him to have more formal care. Or as he ordered to call it - supervision.

I'm trying to figure out if it's 'normal' for parents to ask if they can regularly stay with their adult children and grandchildren in their family home?

@Soontobe60 in terms of finances, they live in a 6-bedroom 3-bathroom house.
Now that her children have moved out - they are now beginning to float the idea of downsizing.

You may have shot yourself in the foot slightly by facilitating this visit. He won't have seen your DD's discomfort at room sharing and now thinks you've got a bedroom he can use. He's probably not aware of the amount of effort hosting the meal and running around him was for you. Presumably this was over a weekend so no work to fit in?

Mine was very very keen to visit often and had no idea of the impact it had on our family life. Until one time she decided to stay longer, into the working week, and spent most of the day on her own. She was expecting a cosy cup of tea and a chat when I got in from work, but we were hurtling between commute, nursery pick up and getting child to bed, then eating ourselves. So she barely got any interaction and the evening meal was about 2 hours after she normally ate. She never extended a visit like this again!

I think you have to be blunt about what you can do. However long this holiday respite will be (a week? Two weeks?) you need to make it clear to him you can't manage it.

If they downsize, that will free up cash available to pay for his care. I don't know whether that is the intention, but it's the reality (IMO a good idea). Only his 'half' of the money will be taken into consideration when paying for his care.

At the moment it does sound as if your dad could potentially cope with someone popping in to check on him and provide meals. That phase may not last long though so they are right to think ahead.

I think you need to be clear and and blunt about what you will do. You won't regularly provide 'respite', they need to find that elsewhere. They will try to guilt you into it and it sounds like he wants to move near you so you can be the one who has to 'deal with it'.

If that does end up happening, I would forget sheltered accommodation - he will soon deteriorate past the point where it is useful. His next move needs to be to a care home. A care home near you could be a good idea, if his relationship with SM is on the rocks and you end up being the main/only visitor.

I moved my mother to a care home near me several years ago and it has worked out okay (she was never a great mother, but I am the only relative so no choices). By the time she moved to the care home I didn't really need to be over involved as they dealt with anything, I just visit every couple of weeks.

Do you have financial POA for him? If you don't, get it now. Do not accept having any input if you do not have POA, because you will have a lot of aggravation and no power to make any decisions (and doubtless SM interfering on the money side).

I can't emphasise that enough - no POA, no input. I have seen people get into appalling difficulties if this is not sorted out in advance.

"They sound confused and it's like they're asking me for ideas and how I'll be involved. I'm stressed and confused. This doesn't feel like it should be my choice / responsibility.

I think they need to set up their respite options near them and keep me updated. Is that fair enough?"

That's absolutely fair OP. It feels like a hard journey for both of them, particularly as they spent late middle age looking after DGCs but it's not your problem to solve.

I would be very blunt, say that there is absolutely no way your DF can stay for a week when you're working and the DDs are going to school.

It sounds like your DSM wants to step back- well who can blame her - so tell her that proper respite for her holidays sounds like a good plan and you hope she finds something suitable.

Sadly this situation isn't getting any better, and it sounds like neither of them want to spend the money on proper care.

It sounds like you’ve handled it really well. Just keep saying no and be blunt. You won’t be providing any respite care, they will either need to organise a live in carer for these trips or a respite stay in a residential home. Your dad has obviously had a lovely time being waited on and seeing family so of course he wants that to continue- he won’t see the hard work you’ve put in or the compromise for your family. ‘No that won’t work for our family.’ You have your own children to prioritise, work and family life.

Thanks.

I'm trying to stay rational and firm about my own family's needs but feel emotional reading these responses.

It's hard seeing him looking quite pathetic and frail and asking how I can help. It also really angers me that he keeps asking how I'm planning to be involved.

I need to be repeatedly clear it seems. Not easy.

They need a social worker - they can self refer or you can

Parkinson's and LBD are both progressive so things will only get more difficult sadly.

He's also asking me if I want him to move closer to me in case anything happens to SM as their relationship isn't brilliant.

I'm glad the weekend went okay (well, no major disasters), but I really feel that your DF and SM are attempting to emotionally blackmail you here and the fact that their relationship isn't great is relevant. Do you think that she's trying to get out of the relationship? Is that at the bottom of all this? I have some sympathy that she is still in good health and clearly wants to continue with her life as normal, going on holiday, etc. The fact that your DF, her life partner, has Parkinson's and a form of dementia, has clearly thrown a huge spanner in her life/plans and (call my cynical!) but it sounds to me like she may be preparing to bail out on their life together and that's why she's trying to dump responsibility for him and his life/wellbeing on you. Why else would he be offering to move closer to you, if not to make himself your responsibility? Is SM here behind the scenes pulling the strings, telling him what he needs to say to you, to prepare you for a much greater role in future in caring for him? OP, you need to be very clear with the pair of them what you're prepared to do and you need to put your DC first.

I'm trying to figure out if it's 'normal' for parents to ask if they can regularly stay with their adult children and grandchildren in their family home? Yes, I think that’s normal and not unreasonable. It becomes unreasonable if they don’t take “no” for an answer

They will try to guilt you into it That’s not a given. Some do, some don’t.

Only his 'half' of the money will be taken into consideration when paying for his care. But it’s sensible to split the money into separate accounts once the assessment has been done, otherwise a year later when A has spent £50,000 on care and B has spent £10,000, council may still treat half the remaining savings as belonging to A.

This doesn't feel like it should be my choice / responsibility. They may no longer be able to make the decision themselves, they may need support in thinking this through. And you are the person who knows them best, cares for them most. But you can refuse. There’s no legal requirement for you to be involved.

it sounds like neither of them want to spend the money on proper care. For this generation it seems like spending their children’s inheritance. The need for many years of care is relatively recent, following advances in medical care, particularly in treatment of heart disease. The idea that you should save in order to spend what seem like unimaginable amounts on care is new one.

OK I am going to be honest here.

1. Despite him coping well with the trip how long will that be?
2. They are married he is her responsibility not yours, why is she swanning off to the Maldives and leaving him to cope alone or with you - you really have no responsibility to him never mind him moving in for a week etc.
3. Downsizing is perfect BUT make sure he gets his fair share of the outcomes. Make sure she isn't attacking his capital assets to swan off on jollies
4. this is all especially important if the relationship isn't great
5. Sounds to me that she thinks the unpalatable bit is that it will cost money she sees as hers

You need to push back hard - doesn't mean you won't help but you are not "taking him off her hands" She is busy spending all his money by the sounds of it to me, when he needs care, I think you need to get adult social services involved and he needs assistance at home when she is not there. You can be involved as his daughter but you are not there to be his carer as she doesn't want to be lumbered with him. If they do downsize I think you need to be super careful all the money doesn't end up in her accounts.

Talk to him about health and financial LPAs and if he no longer wants to be with her then I think sell their big house get him a smaller bungalow local to you with room for an external carer (still gonna be cheaper than a care home) and divi up the monies now before she spends it all. Despite what is generally believed if you don't have the money the council does not pay for it all, they are awful places unless you can afford little luxuries and they take all your pension bar 10 a week for spends. She sounds utterly selfish in my view and whilst I can understand if she is younger (or any age really) that she doesn't want to be tied - its what she signed up for in my view and if she is not prepared to manage it she shouldn't have the benefit of whizzing through the capital available to them