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?

@abracadabra1980 CHC is not means tested so pensions and savings are irrelevant. It is about the nursing care required.

I think it really depends on the stage that he's at. My FIL had LBD (but not Parkinsons) and died recently. His wife found it increasingly hard to cope as time went on (quite understandably) and we had him to stay a few times to give her a break, but only for around three days at a time. He was still physically pretty capable, and not yet regularly incontinent, but it still needed at least one of us to be off work - we couldn't have left him alone. It was hard work but ok.

However, once his condition worsened (particularly with more regular incontinence and night wandering), we stopped having him to stay. We did offer (perhaps foolishly) but MIL said no. He went for respite stays to a care home, for 1-2 weeks at a time. He wasn't terribly happy about it, but it was essential for MIL. The respite stays got more and more frequent, and eventually he went into the home permanently, but only for about three months, as he died earlier than expected.

It's tough, and you all have all my sympathy. It sounds like some very straight conversations might need to be had with your SM about what's manageable, for her and for you, and about future care plans.

@BlueLegume I apologise-you are correct. I was tired when I wrote my post. What I will say is that they try every which way NOT to score you high enough to receive it.

@abracadabra1980 absolutely understand about CHC being hard to secure BUT we seem to have hit the jackpot as Dads nursing home suggested he might get it and he did. Within 3 weeks of being admitted. It’s still in place 12 months on. I’d assumed he got it as they saw he would possibly pass away relatively quickly. I do tell people we got it because it gets such bad press.

@BlueRaspberry7 thank you - I can't over emphasise how hard this combination is. Parkinsons has a few different forms. Dad had Vascular Parkinsonism which mainly affects the person from the waist downwards. He didn't have the massive shaking all the time that is often associated with it. His leg muscles stiffened up. There was nothing we could do to help relieve this for him and no drugs worked. He had restless leg syndrome all the time and described it as an 'ache'.
The reality was: standing up and moving a few paces was the only thing that relieved it for him. mum has to respond to his cries to get up and down all day, every day, unless he was asleep She's help him from his recliner and onto his walker as he couldn't get himself up. He'd do a few circuits of the living room (with mum or one of us walking behind him during the worst times) then want to sit back down again. He'd sit back down and then want up again two minutes later. Repeat. And repeat. And repeat.
We tried everything anyone suggested for him including prescribed exercises, massage, acupuncture, bio freeze, heat medications, heat pads, and only massage seemed to help but it was physically exhausting; mum is in her 80's with joint problems in her hands.
The overnight regime was almost the same, needing to be up and down constantly to relieve his muscle pain in his legs or go for a wee. We recorded everything (very useful for medics) and at his worst he had mum up 17 times during the night. She also had to wash his bedding every single day as his pads would leak, until we got more specialist help in. We paid for a falls service who were fantastic and came out 24/7 if he fell as mum couldn't get him up.
He wore a wrist band that was connected to their system and they would immediately ask from a speaker behind the TV "Xxx are you ok" Sometimes we set it off trying to dress him, and it was fine. We installed a keypad so they could access the house without mum having to answer the door. The rule of thumb is NEVER try to lift an adult who has fallen. Make them comfortable on the floor (with cushions etc) and then the medics will come and put an air lift pad underneath him and pump it up to get him back up again. We also made everything safe in the house like corners of tables and the fireplace (like you would for a toddler) just in case he fell.
The medication is another minefield. Some makes them much worse, others do help a bit, but it all takes weeks to test out. They can't have sleeping tablets because of the fall risk.
Throughout it all, we could understand him when conscious and lucid/not hallucinating and I know he knew we were there and advocating for his every need. My mum was outstanding (even broke a rib in caring for him), and
eventually we ended up with a virtual hospital ward at home, but in the end he had a fall and was in hospital for seven months; he actually died from pancreatic cancer, in the care home we had chosen, with a fantastic Palliative care nurse) and thankfully very peacefully. I made myself a bed on the floor next to him and slept there for the last few nights, to make sure he was never in pain as he couldn't communicate it.
It's a long, arduous journey-not too bad when they can still walk but after that it's like dealing with a severely disabled child, in an adult body. I wish people would talk about it honestly because the medical people don't. They are always positive and saying things like "Xxx looks great today", when you've just had a night of hell. I could never have gone on as long as my mum did, she deserves a medal. (We also removed him from a horrendous respite (suggested by a social worker) and refused to have him put in suggested care homes until we found one we were happy with.) This was right at the end. I also put cameras in there and I know we protected him as much as we possibly could.
Make peace with whatever you decide, there's no right or wrong ❤️

@BlueLegume that's great that you got some help. We did her it for a few months, then they changed his medication and he improved slightly, and within two days it was stopped!

@abracadabra1980 I appreciate how you're sharing your experiences here - however awful - but they are helpful. I'm very sorry for the loss of the Dad - that you used to know.

@abracadabra1980 thanks for sharing your experience here.

I'm so sorry for your loss and the difficulty you and your mum went through with caring for your dad - he was lucky to have you both advocating for him.

It'd be a hard no from me. I used to work as a carer and there was absolutely no way I was doing that for my own DF despite pressure from my Mum. I'd have found it soul destroying and he'd have found it humiliating.

It's going to be far less disruptive for her to curb her travel plans for a bit and get live in carers when she's away than for your kids to deal with the upheaval off having someone who requires a lot of care doing overnights, you fitting in work etc.

just being nosey, but is she offering anything in return?

Buy in a live in carer for a few days so he can be in his own home on familiar territory. Similar cost to care home.
My late mother had LBD and my late OH had PD ... I must have been really bad in a former life .....
Both became paranoid, and both could not cope off their own familiar patch and became distressed.
I had live in care for my OH.

thanks for all the replies, really appreciate everyone's input.

He's not as far down the line as many of the situations with parents you're sharing here. He can toilet (though uses incontinence pads for wee), shower himself, get dressed (very slowly), and move about fine although a bit doddery and has had the occasional fall and stumble. So I wouldn't be doing personal care for him yetas such, it's more about being on constant watch-out, checking he's had his medications, all cooking / preparing drinks + snacks etc, helping with coat on/off and all those little things.

One part of me is saying I should take him for a couple of nights while I still can; the other is saying this isn't a good habit to form and they should be getting some sort of 'at home' help set up sooner rather than later - starting with companionship.

@HoraceGoesBonkers no she isn't offering anything in return, I'm not sure what she could offer.

OP he sounds like he's at exactly the same stage as my FIL was when he was coming to us occasionally. On that basis, I would agree with your assessment - it's manageable but very full on. We only found it manageable because my kids are old enough to look after themselves (and in fact actually help - they're mid to late teens), we have a spare room, and at least one of us was off work for the duration of his stay (and normally both of us). We basically just had to entirely dedicate the three days or so to FIL - sitting with him, keeping him occupied, making sure he'd been able to get dressed OK, helping with meds, shepherding him round the house and out on little trips, helping him get settled for the night. And we made sure doors were open at night so we'd hear if he got up.

I think the decision of whether to say yes will maybe depend on your relationship with your SM and whether you feel it will be easy to say no on future occasions, either because it's inconvenient or feels like too much, or because his needs have changed. In other words - are you setting a precedent? What I would say is, please don't underestimate your SM's need fior a break (I'm not saying you are) - the exhaustion and frustration that you experience for a few days if DF comes to stay is what she's experiencing all day every day, with only the prospect of it getting worse and worse. But if you do say yes, she's got to understand that this will only be possible for a short window of time, while his needs are relatively manageable. And, given that, it might be better to try to get him more used to respite in a care home now (or carers coming in), as this is v likely to be needed sooner or later. (My FIL was about 2.5 years from diagnosis to full time care home, and only another couple of months to death.)

I'd be a bit careful about the dynamic. It sounds like your SM has a lot of resources in terms of time and funds and is expecting to get a lot out of you without putting much back. It's not about money but you are saving her an awful lot and freeing her up to go on a responsibility free trip while adding onto your already quite big responsibility pile.

Would it work if you said no but then offered to have your DF at a time that suits you, for a shorter period? Like if you get time off over Christmas that might be nice, then you can focus on your Dad a bit more?

Then your SM gets a break but it's on your own terms.

@tobyj that does sound like a similar stage between how your FIL was and my DF now.

Having here in the day time is manageable for me. Even if I'm working I could probably set him up with a movie and snacks and chat to him between meetings.

It's night times that are far more problematic for me. We don't have a spare bedroom and the only bedroom he can stay in is close to the stairs. My SM has told me that he's worse at night, including stumbling and getting disoriented going to the toilet at night, even when in his own bedroom at home.

Unfortunately as he lives 2 hours drive from me, the daytime respite option isn't much use to my SM.

Doesn't sound like you'd be capable of keeping him safe for 4 days and nights then.

Don't forget too that if you attempted to have him stay for that long and were up several times in the night to assist him or sleeping badly as you're listening out for him moving around that then affects how you're feeling and what you're able to do during the day both in terms of working and caring.

Yes to this. My DF had LBD and Parkinson’s and they were living with us due to Covid. It was Horrific, nothing would induce me to do it again. I began to dislike him and found it very difficult. Once he went to a proper home that could look after him we could spend proper time with him again and not spend the entire time trying to keep him safe and arranging care and appointments. It had got to the point we couldn’t leave him on his own in a room, without us really realising. Find good care now.

@Catgotyourbrain thank you for the repost. I am still dealing, well my sis and I are dealing with, our brother and mother who think we were heartless ‘putting; our Dad in a nursing facility. They still seem unable to grasp the authorities did it by invoking a DoLs. It fell to my sis and I to find somewhere which was really difficult.
Dad is cared for, safe…a word our brother hates and questions all the time. Frankly I would like to tell my brother Dad was never ‘safe’ around our mother. She was and is manipulative beyond belief.

My dad had LBD and Parkinson. I chose to be involved with his care. My sister didn't. We are both comfortable with our decisions. If you are not able to physically care, could you offer to help step mum access respite care.

People with dementia don’t enjoy anything much, sadly, so of course he didn’t like respite home.

SM did though, and her needs count as much as DF’s. As do yours.

Try another respite place.

I agree. If your SM wasn't there nearly all the time it would be down to you all the time. Four nights is no big ask. You need to step up.

If there was no SM her dad would have carers or be in a home.

"I agree. If your SM wasn't there nearly all the time it would be down to you all the time. Four nights is no big ask. You need to step up."

No it wouldn't, he'd either have carers going in regularly or would be in a home.

And if my uncle had wheels he'd be a bicycle. That also wouldn't oblige the OP to step in.