Taking in DF with Parkinson's and LBD...help?

[BlueRaspberry7]

Please be gentle with me in the comments, as this is a sensitive and difficult time.

My DD (70) was diagnosed with Parkinson's and LBD (Lewy Body Dementia) around 6 years ago. His mental state ranges between fairly coherent and sociable to rather confused ie.losing his train of thought, with some incidents of severe confusion, incontinence (urine), and difficulty with executive function (eg. forgetting his medication, losing objects, difficulty dressing and eating).

The situation is that he lives a couple of hours away from me, where he and my stepmum moved to enjoy country lifestyle, a bigger house, and to accommodate her grandchildren's specialist schooling.

My SM likes to travel. She has previously if I could have my DF to stay with me here when she goes away. As I work full time and have children and no spare bedroom, I said it just wasn't possible with the level of care he requires.
She was away last week and he went to stay at a respite care home, which he didn't enjoy. My SM is just back from her week away today and telling me that DF didn't like the respite home stay. She is planning another week away in January and is asking if I can have DF to stay 'just for half of it' (4 nights from Thurs to Mon).

I have had him to stay at the weekend a couple of times, incuding last month rwhen SM went away for the weekend. This went ok - the kids shared a bedroom and we all got on well and my DH supported it and was a good host. But honestly I found it challenging and tiring, physically and emotionally.

I feel in such a difficult position. The truth is, while I want a relationship with my DF, I don't want to be his carer and his stays are a compromise for my family. He just sees it as a social visit, but it isn't just that any more.

I realise family involves compromise and give and take, but I feel this is a bit much to ask me to do.

I could offer to go and stay up with him when she goes away, but I think the main point is that I'm not comfortable being in a sort of caring role to him. Apparently he can get disoriented in the night and has had stumbles once or twice. This frightens me and makes me very anxious.

My heart and head say I should let them both know that they should be getting a live-in or visiting carer to come in when SM goes away, and we have had a conversation about this option. Yet she's already asking me again if he can stay with me for 4 nights.

WWYD?

Honestly... I can see that it's tiring and emotionally draining for you, but to give your poor SM a break, I'd do it, once or twice a year for a few days. She has to do it nearly all year.

I'd say a definite no to him staying.

Couldn't she try somewhere else for respite care? Or arrange a live-in carer for whilst she's away?

I disagree with Cecelia.

Facilitate a break, yes - offer help with finding a different home for respite or a live in carer. But if you're not comfortable doing hands-on care, and dont feel able to cope with the night care, then don't do it.

Especially as it's a condition that can have a sudden step down. My dad went from OK getting around slowly without aids and doing all his own personal care to unable to stand unsupported and needing help with toiletting quite literally overnight.

Yes, don't start this. Just say... I love my dad very much, and I enjoy spending time with him, but I'm not comfortable with doing personal care for him.

Offer to visit him whilst she's away, but while he's in respite care or has a carer staying with him.

I know your DF won't like it, but he's her responsibility.

His condition will worsen, it will get more difficult than it is now, and you'll have to do this at some point.

Say no now.

I remember your post from last time and I’m sorry they are still trying to get you to take him in. They are being quite manipulative because you have repeatedly said no, you don’t have a spare room and have young kids whose routine is turned upside down when he is with you. I wonder if their long term plan is just to leave him with you, and make you become his carer.

Say no. I know you feel bad but they should not be asking this of you. It would be hard enough if you were exceptionally close and from what I remember you aren’t. When they say he didn’t like respite ‘oh that’s a shame will you try a different one.’ ‘Oh why don’t you see about having a carer come to stay in the house.’ Never offer to have him. If they ask directly ‘No that isn’t an option. It won’t change so please stop asking.’

Just say it's too much for you and you're really sorry but you can't manage. Your SM is choosing to do all she is which is lovely, and she is of course entitled to a break - but she needs to get in carers.

She presumably doesn't work FT and have children still at home.

I wouldn't do this. I loved my dad dearly but made the decision when his dementia started worsening that it would be too much upheaval for me and the rest of the family to have him live here. This included overnight visits too as on his last few, he wasn't at ease either and kept asking to go home, saying he would walk home if I wouldn't take him and things like that. I have read that LBD is particularly difficult to cope with so I feel you all. Dementia is a very cruel condition.

Respite care may not make your dad fully happy, but it's one of the awful things about dementia that it robs people of that anyway. They are pretty much always unsettled. However, at least you can know with him in decent respite care that he will be cared for, clean and safe and with professionals watching out for him. I think that is now your best option if your step mum is away or unable to carry on. It is understandable that she wants a break, and would be if she was now ready to give up the care as it's so hard. But with young children you are simply not in a position to fill the gap.

Having watched my stepfather deteriorate with PD and LBD, it would be a hard no from me.

Well, quite. How much respite has the step mother ever given the OP

My thoughts are to gently refuse while offering help to find a suitable live in carer for the time your step mum is away. If that seems unacceptable then help to identify an alternative respite facility. It’s sensible to think about your dads physical safety, if he’s safe in his own home he should stay there, much as he was familiar with your home it may not seem so familiar now his illness has progressed. Perhaps you could offer to visit him while your step mum is away, remain his daughter while showing you care.

^^ this

I cared for my mother with PD and the starting of dementia for many years. I was on constant high alert day and night. She is in a home now but it took me a very long time to switch off and relax knowing she was safe.

@BlueRaspberry7 please take on the advice from @Soontobe60 and @Hedgesgalore . Parkinson’s patients once they deteriorate, especially the elderly, require specialist nursing care. Facing the reality that a nursing facility is difficult for some but bluntly for me it was a relief to be told my Dad needed nursing care as other family members seemed blind or ignorant to the state he was in. I reconciled it in my own mind knowing he was now ‘safe’. It is a phrase by brother always questions when I use it but I stand by it. He was not ‘safe’ in an unsuitable home with a carer as in our mother who seemed to think if she meticulously fed him his myriad of medication he would ‘get better’. It is not a criticism of them we all see things differently that’s all. A firm NO at this stage might speed up a further conversation about what you need to do next. If you all keep ‘doing bits’ you will stave off the inevitable crisis. It sounds like a nursing facility is needed now. Best wishes.

SM could employ carers to look after DF at home while she away. Is that a suitable option?

Your step mum needs a break but that doesn't mean that you need to provide the cover. Next time she could look for a different respite place or arrange a live in carer. She can keep asking you and you can keep saying no. It needs to be a very clear "no" without any suspicion of a "maybe".

I remember your previous thread.
When your SM needs a break, they need to pay for respite care.
Your father is going to continue to deteriorate, and it is not feasible for him to do a long journey and stay with you.

But you had him to stay last month and unless you say firmly no, they are going to continue to ask.

Yes, I also remeber your previous post. I don’t think your SM is being fair. You should reminder her of what you have already said. Your father will only get worse.
You should put yourself and your immediate family first.

I really don't see how you could possibly care for him on a day when you are at work and (presumably) also have to get children ready and to child-care etc. My FIL had PD and LBD and there's no way he could have been safely left alone all day, or reliably asked to get himself dressed and fed. I would also have been concerned that he might get confused about where he was, or try to take himself out for a walk etc and become distressed. As with pp's experience, my FIL also had several times when his condition deteriorated a lot within a few days. He also had days where, without any particular pattern or warning, his physical health and/or dementia would be much worse than usual.

FIL was not keen on going in to a care home but we managed to find somewhere that he could go to just for a few hours to start with, so that he became more familiar with it and got to know some of the staff. He then did a full day occasionally, then the odd night. As well as giving MIL some respite, I think it helped make it less stressful for him when he eventually had to move in to a home full time (MIL tried having daily carers for a while but his care needs were just too much for her to manage that way eventually).

I can completely understand why your step-mum needs some time off from being a carer, and if he didn't like the respite home I'm sure it seems to her like staying with you is the obvious solution. But I really don't think it's safe or fair on anyone.

I'd do it but enlist some help. I'm sure your father could afford it and it would mean you are not caring for him alone and will have time for your family (& yourself).

Won’t it confuse him if he comes to stay with you? If your SM needs respite (which I don’t blame her) then is it time to have the tough talk about carers/care home? You say you don’t want the carer role, but I assume she doesn’t either

I remember your previous thread, you must say no and don't offer to go there instead unless you absolutely feel you have to.
Where are they planning that he goes for the other 3 nights?

Same here. It's the most horrendous combination of illnesses that even a person with the most compassionate heart, will suffer from empathy fatigue at some point and possibly major depression. One factor in my dads condition was that when he was are 'lucid', and can hear, they understand everything that is being said. (The lucidness can change from hour to hour and day to day). Every individual is of course different, but both diseases themselves are incurable, nobody cares about the 'carer', in this case your SM, and as long as social services think you as a family. will take the burden, they will let you. If he has a pension or capital you are highly unlikely to get CHC (another minefield of stress). My advice would be to acquaint yourselves with carers now, as the incontinence just gets worse, many of them start 'sundowning', getting active, just as you are likely to want to drop at 6pm. It actually drove my mother to a breakdown and she adored my dad and is TOUGH. I 'dadsat' one day a week just so my mum could get out and stay sane (ie so her weekly shop), and that was enough to horrify me. We cared for around seven years, the last 3 were nothing short of torture. I'm very very sorry to have to share this, but I just want you to understand how hard it is. You would be giving your SM a lifeline if you could step in and give her some respite, maybe once a month. We had to deal with double incontinence for years.
In preparation for my mum getting to the end of her caring abilities, we toured every care home in our area and could afford a 'decent one', but none of them were appealing and all had a room off a corridor whereby the door was closed and they were supposedly "checked every 20 minutes". There was no way with the staffing shortages that this could happen. Also my dad couldn't move any of his limbs on a bad day, much less so press a buzzer for attention. He became voiceless- another symptom. He begged us to end it for him, and if I didn't have children I would have. The sooner assisted dying comes in, the better as I'm still traumatised as an adult who has dealt with death, at the suffering he went though. I adored him. I'm lease make sure you have POA for both finances and health. X

@abracadabra1980 I'm so so sorry you went through this with your dad, what a cruel ending to his life and a drawn out trauma for you and your mum. I'm sorry.

It was ironic that when my stepfather went into a home he massively improved physically, as he was getting well fed, plus his meds were carefully monitored and altered by the GP who visited the home weekly. So although we were told to expect a life span of 6 months, he eventually lived for 3 more years. His last few months were brutal though.