Should I do anything? What could I do?

[Corneliafunk]

More of a WWYD, and posting here for traffic, looking for ideas and thoughts.
I have arrived home feeling disturbed from staying with my older sister and BIL (no kids). She is late 50s (he younger by about 10 years) and has some form of Parkinson’s which she doesn’t like talking about. She works as a relief teacher, he works full time in a demanding role in a different field.
DSis is physically less able than when I saw her last, has lost muscle mass in arms and legs. Her voice is thin sounding. She was tired each evening so lost self in YouTube. BIL had mentionitis about a woman he works with. Not much food in the house (I took them out for a meal one night and left before breakfast on my last day there). Financially they are well off, although they probably worry about their long term situation.

DSis is part of a local support group and does social things with them.
They live 5 hours from me. My father lives nearby but is 80 and is starting to get health complaints, and doesn’t see much of them (although says he provides them with support).

It was just a snapshot of their situation but I wonder what the trajectory of their lives will be given the Parkinson’s - I encouraged DS to visit a nutritionist to get info on building muscle as a fall could lead to broken hip.
I have another sibling but they live further away and don’t stay in touch.
Any thoughts on whether I should/can do anything more than the sporadic phone call I currently make as support? Often my timing is bad and DSis not wanting to talk much.

I think with Parkinson's your sister will end up first in a mobility scooter and then in a wheelchair. She'll probably have carers coming in to help her, she'll need a social services assessment at some point for that, unless they're self-funding. You could Google all this to see what's typical, there'll be a Parkinson's charity somewhere.

I'd start asking sister when is best to call or texting first when you're available to ask if she'd like a call now. She's unwell, not trying to shut you out. How close are you? If you want to be closer, contact her more. That's all you can do really. She won't be around forever so you've got to think about which action will give you no regrets.

She's also clearly knackered so exercising is probably out of the question.

Will BIL stay, do you think? Personally I don't have a problem with people with sick partners finding someone else. Severely sick people who are only ever going to deteriorate can't really participate in a relationship on equal terms like they used to and it can be devastating for the other partner to watch them slowly die. If they finds comfort in someone else, I don't blame them. Just so long as they stay and support/care as appropriate if it's a LTR. Ultimately though, a lot of people are selfish and do only what suits them. So it's worth paying attention to signs he might be thinking of leaving. I wouldn't judge or get involved, beyond being a listening ear for sister and checking if sister needs social services help because BIL has gone AWOL (if he does). It's no good anyone thinking he's her carer if he's not and is neglecting her and pretty much never there.

It's good she has a support group and your dad too, as well as you and BIL. She doesn't sound isolated, which is good.

If she doesn't like talking about it then chat about other things. Sometimes a bit of normality is a welcome distraction. You can't do anything about the Parkinson's, so what's the benefit to her of talking to you about it? Unless she just needs to offload. I expect she talks about it enough with her doctors. She's still a person first and foremost, she's not an illness and it shouldn't be her sole focus.

Thanks so much for your thoughts, it has given me more to consider. When I have looked on Google about Parkinson’s it said that life expectancy can be as normal, depending on the type. I can foresee that teaching isn’t something she will be able to do at some point as much for her voice as anything.

She reduced phoning me in frequency some years ago, probably when she got her diagnosis (which none of us (the family) knew about for quite a long time). She isn’t into texting - just sends an emojis in response to messages.

I will look to phone more regularly for a general gossip about the wider family - and end the call quickly if she isn’t in the mood!
Not sure what will happen with BIL - they were always a devoted couple and there is still evident affection between them. I may be reading something more into his work situation than is actually the case…

If you like your BIL you could check what support he has. People generally focus on the ill person but those living with or caring for them will be affected too, not least because of having to be support to the sick one. The healthy person needs support too.

I wouldn't think the mentionitis is a coincidence OP.

Normal life expectancy maybe. Not healthy life expectancy though.

I can actually understand her husband in this situation as it doesn't sound as though the marriage itself is very healthy if she just wants to watch YouTube all the evening. He's obviously found someone to talk to and I imagine the future looks quite bleak for him.

Gosh that sounds like such a hard situation for everyone. With being 10 years younger BIL probably expected to do caring at some stage, but not this young, and DF at 80 was likely hoping for support for himself, not vice versa.

I think all you can do is keep in touch. Emails and cards if phone calls are difficult. Look out for your DF as they aren’t really able to.

Thanks all. I did feel a bit bleak about the situation as I was leaving. My sister seemed ok though, quite matter of fact. I am not close to my BIL, haven’t had too much to do with him aside from the odd family thing here and there. We did swap numbers though and he seemed eager to talk about the situation while I was there (DSis had gone to bed).
I guess all I can do from this distance is phone and text regularly.

If you do decide to emotionally or practically support these three (DSis, BIL and DF) please do ensure you either limit how much of yourself you give or obtain some support for yourself from elsewhere. You can't endlessly give in life and get nothing back, you'd end up burnt out.

It is a bleak situation. Your sister has known about it for some time and come to terms with it, she's probably hiding it as much as she can and keeping up the veneer of normality. So you've only just noticed how bad things are because she's reached the point of being too unwell to effectively hide it any more.

All relationships with a seriously and chronically unwell spouse end up essentially being unhealthy relationships, because it gradually moves from equal partners to carer/patient roles. All informal carers need external support, it's a demanding role to have in life. Sister is not being unkind, she's just too ill to do anything other than watch YouTube of an evening. She sounds totally exhausted to me.

If you're concerned about their finances OP and their ability to afford food, you could check they're receiving any benefits they're entitled to. Input their details into "entitled to" website for an idea. It could be they just shop every few days though or eat a lot of takeaway. If BILs life has become very work/home/sleep/repeat he might enjoy these frequent trips out for the human interaction and brief respite from caring it provides.

Thanks so much for the messages. I have spent a lot of time thinking about my stay with them. I realised some of DSis’s most annoying habits were magnified probably due to her tiredness. But I am now also wondering if she is on the spectrum- not something thought about back in the 80s when we were kids.
She still never offers food to others - just helps herself and sits down and starts eating. We all told her growing up that this was rude, but she is still oblivious to social norms like this.

She still rants about her hobby horse topic of the time (currently anti Trump), but continues long after the rest of us have had enough.
I remember some years ago her focus was a Judges very lengthy report about something (can’t remember what now, but she had taken a sudden interest in it) and she had spent the entire first week of her holidays reading it!
There are so so many other examples like this and even her friends who I have met just say oh that’s just DSis being DSis - but it could also be - high functioning autism??

She and I have a similar sense of humour which is why we get on, but it wasn’t on display much when I was there (not surprisingly). I say this as otherwise she sounds a big bore, which she isn’t.

However I wonder if this has ever been something she has questioned herself about - not sure if I dare ask next time we talk. Would you broach it in my position? To me it explains a lot, but I am no psychologist- just putting what I think is 2 & 2 together