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"

Not all care homes are awful - please don't go in with this opinion.

I visit a few in my role - there are some not so good ones but there are some lovely ones with happy residents and caring staff

@cheezncrackers this is likely close to the mark. SM has asked me more than once if our house will be an option for future respite care and I have explained why it is not. Yet they both keep asking me.

It broke my heart that when I took my dad to the station just now, he said he hoped he hadn't been an intrusion and looked at me expectantly. I said it's been lovely to have him but it involves a compromise for us as a family and won't be a future respite option, but an occasional weekend stay.

I think it finally got through to him but we'll see.

OP wrote this, “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.”

You reap what you sow. If you want loving and involved children, you need to be a loving and involved dad.

It wasn't intended to sound heartless.

This has been a difficult relationship for many years.

my father chose to move up the country soon after I had my kids and despite taking on other dependents, he pushed back on the one time I went to him for help.

There are also other historical issues and difficulties that I won't go into on a public forum.

In a way though, I think this makes it easier for you to push back now. He wasn't there for you when you needed him and while two wrongs don't make a right, I agree that 'you reap what you sow'. So many parents are selfish and short-sighted and don't think that one day it could be them needing a helping hand.

I'm sorry that my cynicism seems to be well-placed. But all this 'if something happens to SM' certainly appears to be shorthand for 'when SM drops the bombshell that she's off to enjoy a carefree life of skiing and holidays in the Maldives without the responsibility and tie of her sick second DH'. I'd be tempted to confront her actually and ask her straight out if this is her plan. Selling their house and splitting the proceeds would be the ideal time for them to split up and go their separate ways, so the fact that that 'downsizing' is also apparently part of the plan makes the timing of the comments, your DF's visit, the feelers being put out about 'respite care', etc, seem all the more pertinent.

This is very unkind. The OP is a mother and she should put her children’s needs first all the time. OP’s SM is her father’s next of kin and she should be the one sorting out respite care.
I am just older than OP’s father and hell would freeze over before my children had to do respite care for me. They have their own children to look after.

@Flossflower thank you.

"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."

Is it possible that the dementia has advanced sufficiently that he genuinely cannot remember how often over the weekend he asked this question?

That aside, the best place for him is respite care in a local care home when she has another holiday. He could very easily get confused on the journey to you and miss his stop, if he has a fall during the time, staff at the home could help him up, there will be people to talk to all week, bathrooms will be adapted for the unsteady etc.

And those are all the things that are good for him, before we consider the negative impact on you and your family of moving rooms around, planning for his visit etc.

Thanks @SheilaFentiman , this is really well put and will help me convey this to DF and DS.

The room he stays in at our house is close to the stairs which makes me especially nervous, as he's been getting disoriented at night time.

Respite in a care home is also a great way to test out a few to see which might be suitable for permanent care later.

May I ask, as all of this is looming on my horizon due to my mum’s quickly deteriorating condition- when you say ‘care home’ for LBD is that a residential home or a nursing home or something else? This is all new to me and overwhelming as I don’t know anything.

My Aunt who had PD with LBD moved into a nursing home. She had had carers at home for about a year but after she had a fall went into hospital and was told she had to go into a nursing home.

Thanks, that’s very helpful. We don’t even have a proper diagnosis yet, it’s all just happening. My mum had been fairly ok for a long time but has recently deteriorated- as her GP puts it “suddenly the wheels have come off”- she’s had a fall, she’s having lengthy episodes of delirium (not linked to infections), she’s extremely confused at times and when this happens she can’t operate her phone, can’t use the cooker safely etc. forgetting to close the bathroom door when using the loo, sleeping all the time. It’s all a bit overwhelming. Our most pressing job is to get a care needs assessment asap. Her psychiatrist has already scheduled her for a brain CT scan which might reveal something. I wondered if respite would even give her a taster of a care home. We are just trying to find the way ahead. 😐

Sorry OP, didn’t mean to hijack your thread.
best wishes xx

@AgileGreenSeal It depends on which type of care home the person needs to 'meet their needs'. A discussion with the care home manager will help decide this.

Terms tends to be a bit interchangeable unfortunately, but as a generalisation

'Residential' is usually used for those with low needs, maybe mobility problems but no dementia.

Dementia care home - self explanatory. But they vary in terms of who they will take, some only like 'easy' early residents, others will cater for moderate and severe dementia.

Nursing home - for those with nursing needs, i.e. need medical staff on hand. (A dementia care home will not have a nurse on the staff, they will call in a GP or district nurse as needed.)

There are also nursing dementia care homes for those with both types of needs.

Best of luck finding somewhere for your relative.

That’s very helpful, thank you. 👍

I suspect the converse has gone something like this

I need some time off/time to myself. Also I'm not unwell myself so I do t want to restrict my life as if I am just yet.

Ok go on hols then

But who will look after you? How about respite? Who will worry about you for me so I can holiday in peace

I don't need a care home they are much worse than me / on their last legs. I don't want to think about that yet I'll go stay with my daughter that will be nice

That sounds good because then she can have the responsibility for a bit

OP you and they need to think about future proofing at this point. What's a solution that will continue to work if he deteriorates because your SMs need for respite will only intensify

If there are funds available:

Is getting live in respite care an option?

Are there any nice care homes with a social club type thing attached where the emphasis is more on social activities than the 24/7 care?

@AgileGreenSeal it might be worth familiarising yourself with some of the terms used by medical staff. We were told our father required a nursing facility with an EMI and an EMD license. Not all can cater. Some useful information https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/care-homes/

Thank you @BlueLegume 👍

Sadly unless there is a family plan in place that everyone agrees to it may well be that your choices are taken out of your hands. Our father was in hospital for some time, social workers engaged with us but our mother point blank refused or couldn’t process what they were saying which simply put was - he needs to be in a nursing home. She kept stalling saying she wanted him home which was utterly ridiculous - in the hospital ward he required at least 4 members of staff to do the smallest of things. Eventually he was moved to a bed in a reablement facility but that was an incredibly inappropriate setting - the staff were amazing. Eventually the clinical lead organised a meeting along with a social worker and they told us they were putting a DoLs (deprivation of liberty) in place. We had to find a nursing home or they would. In truth most we called either didn’t have a bed, couldn’t cater for his needs or simply were not taking in new residents due to staffing. Choice was not something we had. It is incredibly stressful and if I had my time again I would have had a firmer conversation with my parents about 4 years ago when the wheels started to come off, but it just fell on deaf ears. Good luck.

She is busy spending all his money by the sounds of it to me Really? Might it not be her money?

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. They’re the same places as self-payers. Not the high end ones, but there is no correlation between cost and quality of care.

they take all your pension bar 10 a week for spends. £28.25 actually.

It sounds as if you’ve had a bad experience with a parent’s new partner.

It could possibly be her money - depends where it originated and how long the marriage was/is. Its clearly a second or more marriage. And if she wont fork out for residential or respite care whilst she is off on a holiday costing several thousand in the Maldives its clearly more than just her money or share of the money in my view. The Morals of it are deplorable.

10/28 quid - its still not alot on the scheme of things you can hardly visit the dentist for that these days even if you do get NHS services. Its about time they put it up

Re quality of care - money can buy improved services as it always has. If its a council or authority run place it wont and if you have it they will take it but private it will.

oh and re bad experience no, both parents together till the end from age 19 to 74, same for grandparents and all aunties and uncles as well, both sides.

I think sometimes when the spending is so one sided it can effectively be financial abuse, certainly if it meant no money was left it could be seen as deprivation of assets if they just spent a wodge on holidays in the last few years and it was only her going on them.

I am not saying she shouldn't have holidays and time away she absolutely should but it shouldn't be excessive and also shouldn't be at the expense of others around, they are your responsibility and making out they are responsibility of children or other relatives is wrong.

OP is allowed to know her limits with her other responsibilities and say no to longer care and as others have said its a good opportunity to try respite style care in an environment where they are safe, so a) a relationship with that environment is set up b) the person feels safe in that environment and c) their needs are understood. Then if anything happens like the other person falls ill there is a plan b other than shipping them off on the train for 2 hrs