Supporting partner of family member with terminal condition

[NCfornonly]

Hello,
We have a family member who is caring for a loved one with a terminal condition. The condition is degenerative and she is already very busy caring and sorting things that need to be sorted for her partner (eg equipment, benefits, accessibility work). The condition is horrible and she is likely to be caring round the clock until he passes, which I imagine will be maybe in the second half of 2024.

we’ve helped moving furniture, getting painting done on accessibility extension. Tried to help by taking meals but she’s a “host” so doesn’t like people helping cooking/cleaning. We have kept visits relatively short so we are still seeing them, but hopefully not making life hard work.

It would be great to hear ideas of what others, in similar situations, have found helpful or unhelpful.

Shes not the type to ask for help, or to be direct in telling people what is helpful/ isn’t helpful. So it’s difficult to just ask. Yet she accepts if specific help is offered (eg will will visit Friday and help get the painting finished).

Just for context this person and their loved ones are close family members, not extended. There’s also a weird dynamic of another family member telling us “oh sue doesnt want people visiting at the moment but won’t say to you”, however ‘sue’ herself is saying we should visit, and it would be odd for us not to given how close we are. We took the stance of just asking if a visit is helpful or not and just doing very short visits rather than staying for long periods.

anyway any thoughts or advice is welcome.

The communication issues really aren't going to help, but the timelines you have mentioned mean there may be little change of improving that in time.

There's a ring theory for this. The person with the condition is at the centre, the family carer is in the first ring, close family and friends in the next one, wider family and friend next etc. Rule is that you only dump shit on people who are in a ring further out that yours. No matter how exasperating they get.

Continue to offer concrete help on specific days - that's something much easier to say yes/no to than general offers.

Ask about how things are going - be alert for things that might be helpful for you to do and offer them. Are there things they might like in place but haven't got round to or find tricky (eg online services) that you could set up for them?

Can you visit on a regular-ish schedule, so that the carer knows they get an hour or two off then? Right now their hostly instincts might mean it doesn't feel like that for them, but over time that may well change.

Having someone else familiar with patterns of care is I think really important. It could be you, and/or someone else in the family, ot paid carers or emergency carers from the LA. But if the key relative/carer was ill - say appendicitis with 48 hours in hospital, or noro and mustn't touch until symptoms subside, or covid and too unwell to get up - then someone may be needed. Who understands the meds and the monitoring, and who knows the patients normal daily routine and little comforts. Can you edge into that understudy role? And then idc be able to offer the main carer respite for a couple of days every few weeks?

@nether thanks for advice, the response is really appreciated. No sadly the communication issues will not be solved and is something we have to work around the best we can. There is an odd dynamic between 3 family members, of which the carer is one, where they keep secrets from each others, or miscommunication and a bit of manipulation. It’s just an odd dynamic that I have avoided being part of but with the current situation it does become difficult. There’s also addiction issues with the other family member who is saying we shouldn’t visit.

Thanks for the advice about training in care. I will follow up with that idea. A family member has also trained in the care but they are the one the asked us not to visit and she has a weird close but toxic relationship with the carer. We will offer to train in his care too when we speak next and offer specific times we can help (as we know she is unlikely to ask). It’s hard as we live 2 hrs away but we have been visiting every 2-3 weeks anyway, so can build that in and up visits it as the condition progresses.

We’ve found a cheap hotel near so we don’t have to stay at their home and can visit for a few days without causing extra work.

Do you have any advice about supporting the poorly relative? This relative is not a communicative person and even before being poorly wasn’t overly emotionally responsive (so wouldn’t show a lot of affection etc). So we want to show out love but without making him feel uncomfortable. My DH who is his brother wants to tell him how much he loves him and that’s he’s been a great brother etc, but I’ve suggested that might be a bit much for him as he really isn’t open to talk like that normally (he doesn’t say I love you etc). So I suggested maybe just sit and chat with him, reminisce about some funny past times from childhood etc. so showing love in a less in your face way? I dunno. I never thought navigating the situation would be so complicated.