Supporting my DH and SILs in elder care without overstepping

[MangoSeason]

How do you stand back and manage what is going to be a perfect storm elder care disaster when the elderly people in question are your PILs?

Every box is ticked- dementia, denial among siblings, house too big, no parent of mine is going in a home, 2 siblings local, one over a 1000kms away, hoarding, refusing help of carers, no POAs in place, hurts and resentments running riot, etc etc. Nothing this board doesn’t see all the time.

I don’t think DH and his siblings are handing it or planning things at all well. I think I can see the endgame of this disaster very clearly and they can’t. How do I support them without overstepping? For context, DH and I are the ones over a 1000km away.

There is no answer, I suspect you know that.

In your shoes, I would sit with my DH and try and agree that we would aim to remain in good terms with everyone (siblings), be a sounding board or a respite ear, and try and be the calm, mediating centre of the cluster-f*ck you know it will become.

I would also try and look at some of the easier options, and maybe see if you could gently push to get them done in the coming weeks/months. Eg Wills and POA (if still able to do, with the dementia). Maybe one week you are visiting, you could offer to arrange the solicitor. Or if the house is double storied, gently push people to reconfigure it so all rooms PIL use are on the ground floor (Eg move bedroom down etc). These small things won’t solve the big problem, but may assist longer term.

Finally, I would encourage everyone to think of “carer breaks”, and maybe see if you and your DH could help one weekend/every 2 months, just to keep an eye on them/things. But balance this with making sure your help doesn't enable them all to keep caring past their capacity to do so.

The hoarding too - obviously depending on how serious it is. If you get the PIL to be all downstairs, perhaps you could move some of the stuff downstairs offsite to a storage shed (so they feel ok, and don’t feel it’s being thrown out). But during the load up of the truck to the shed, only put junk, so you know that it can be very quickly decluttered/thrown out when the time comes.

If they won’t notice, perhaps straight to the tip? Or otherwise, paying a storage fee just for the PIL peace of mind for awhile won’t hurt.

Thank-you for your wise words, FollowYourOwnNorthStar. Clusterf**k is the right term.

I’m pleased to say I have instigated carer breaks already. After seeing how my MIL was at Christmas( she has the dementia) and the endless mental and physical work this caused the SIL who was visiting too, I told DH he needs to fly down every 6 weeks or so to help out. He has somewhat escaped caring duties due to distance and his Penis of Protection. He has stepped up though. I’m watching both of my vibrant and social SIL’s lives contract from afar as their holidays, evenings and weekends go to caring duties and it’s heartbreaking. DH has done one trip already, I was down with my kids over Easter and DH is due to go next month too.

Thanks for the hoarding tips. It can’t be done when FIL is at home as he won’t allow it and checks the bins. So it would have to be when he was away and I don’t think he would notice anything gone, just wouldn’t let it happen if he was there. This is bottles and jars and a lifetime of Knick knacks and towels. So many bloody towels!

DH and his sisters are planning to hold a summit at the next visit in May. DH said they will sit their mum down and work things out. I’m listening to DH thinking that his Mum won’t even remember the conversation after an hour. I told him I don’t believe she would be able to make toast and a cup of tea anymore and he was so shocked. It’s FIL who needs to be at the summit. He scaffolds MIL and does everything but has cancer and a dicky heart and TIAs all the time and I expect he will die very suddenly, very soon.

As an ex district nurse this is very common. This sounds awful but your SIL are choosing to have that much input. It's difficult to stand back of course, but their lives will pan out as a result of that choice. All the while they are propping up the situation nothing will change. It could go on years.
DH can make his own choice. PIL have made theirs, and only when a crisis results as a consequence will things actually move forward.
Remind social services it is they that have the duty of care to two vulnerable adults at risk. They will otherwise quite happily leave you to it.
Sadly you cannot reason with dementia. Today is the best your MIL will ever be.

I have to agree with @cptartapp. My PIL didn’t have the hoarding, and the siblings (DH and his sister) were on good terms, but everything else - MIL with steadily worsening dementia, denial / ignorance from FIL, resistance to care, DH and I living abroad, SIL taking on all the caring duties - is similar. And a DIL (you and I) who’s standing back thinking “what planet are these people on?? Can’t they see how fragile / demented / in need of professional care MIL is? and how totally incapable FIL is of providing it??” ;-) Because of Covid we have not been able to visit at all, so all negotiations were at a distance.

For ages we thought FIL was the one we had to tackle to get things put in place and made safer and more sustainable for MIL at home. Turns out it was actually SIL. She was the one choosing to sacrifice her time / life / energy to prop up their unsustainable situation. We tried many things to get her to hand some of the work over - finding a cleaner, getting equipment installed to help MIL move around safely, ready meals, contacting social / day care groups etc. None of it happened - the minute FIL resisted (don’t want strangers in the house, MIL wouldn’t enjoy the day care etc) she just caved and went back to slaving away. I don’t know how it would have panned out because MIL became ill, was hospitalised then went straight to a nursing home - which was a big relief all round.

So it followed exactly the path outlined above: family lurch along trying to plug the gaps for so long, everyone gets knackered and wrung out, crisis happens - and it all changes. As long as your SIL is stepping in to prop them up, nothing will change. Why would it? FIL was perfectly happy to have SIL at his beck and call - and she kept responding. And we couldn’t ban her - it was her choice.

The other thing to add - and your family dynamics may be different - but DH had to tread carefully to stay on good terms with both FIL and SIL. They were the ones dealing with MIL day in, day out, and DH breezing in from overseas, telling them what they were doing wrong and what they should do, would have gone down very badly. SIL - for whatever reason - believed she was doing the right thing by slaving away for them and not forcing her father to take responsibility and face up to reality. Certainly FIL totally expected her to “help out”, and DH pointing out that he was taking advantage went down very badly. DH is very diplomatic, but he had to accept that he couldn’t prevent his sister doing this, and he couldn’t stop his dad from accepting her help. All we could do was offer as many outs as possible, and make her aware that we, at least, did not expect her to do this and that we would support her if she said FIL needed to get cleaner, get carers in etc .

It's hard, isn't it, OP?
We have the same thing going on here.
FIL, DH and BIL were blind/in denial about MIL'S dementia (she has never been able to acknowledge that she's ill) for a long time, even though I kept pointing out blatant changes which were cause for concern over a number of years.
I had to push hard for them to take notice, to have the talk, to put things in place. It wasn't pleasant. They have stepped up now (MIL is in early-late stage, if that makes sense) but are still dragging their feet on getting her in a home. I understand that it's something she always said she'd hate, DH is worried that she'll just let herself die, that it's a huge step emotionally for them all ( and BIL is thinking of "his" inheritance ), but I'm concerned that even with carers coming in twice a day she needs round the clock care. I'm afraid she'll choke on her food or have a bad fall and PIL won't be able to cope. It's a horrible, horrible situation. I've voiced my concerns as calmy as I can. DH told me, more or less, to butt out an let them deal with it.
I think it must be hard to have the objectivity of a concerned outsider (yes, she's my MIL but we were never that close) when it's your own mum.
(On a lighter note, I laughed at the expression Penis of Protection! )

@frumpyswayingqueen

With us, it was fear of a fall - FIL seemed incapable of seeing that side tables, rugs, magazine racks were all dangerous obstacles to someone moving around with a frame. Also, he got a walk-in shower installed to replace the bath - but chose a lever tap that MIL couldn’t operate safely (couldn’t tell which direction was hot or cold). Despite her having Parkinson’s and dementia, he expected her to remember to take her medication - turned out she was hiding most of it all over the house and he wasn’t checking she’d taken it 🙄. We all knew this was happening - but SIL kept stepping in to try and fix it (by being there twice a day, despite working and having her own family) rather than going against FIL and asking for help / carers. And we just got nowhere. It was so frustrating. In the end she got severely dehydrated (again FIL expected her to sort herself out if she was thirsty), collapsed and was in hospital for nearly two months.

Socially distanced hugs/caring hand lightly on your shoulder (as you prefer )

One thing my sister told me to just accept and make my peace with early on was that changes will only really come after some disaster. You do as much as you can in anticipation but basically the big changes will only really come after some emergency, an a fall, an ambulance / hospital visit.

If feels horrible to accept that these things will happen but in the longer term it's better just to accept that this is the way it is.

By all means do the research and know what you will do, but don't try and force it on the elderly. It's not great but there it is.

Thank-you for all the advice and kind words. Workwoes123, your comment that it might be SIL who is the one that needs tackling is startling to me but rings very true. SIL #1 has lived next door to PILs for 20 years. SIL #2 lives two streets away. Both hare single women without children and both have an intensely close relationship with their parents. SIL # Iiving next door has been mutually beneficial for ages, but now it just adds to the burden because she is “right there”. She is also quite controlling about information and management of the situation. There is absolutely no funny business going on and she is straight as a dye- it has always been her nature but it means she is carrying more of the burden than she should be.

Families eh!

There's no right answer but I was in this position except we were a generation down. The children weren't stepping up so my exh and myself along with his siblings did the research, sorted the poa, got funding (low income) arranged carers etc. I handled all the money, paye for the carers etc. Until they died I was still doing this despite having long split from h!

I have this issue although siblings get on and we all live locally. DH and SIL have joint POA, FIL is a widower and is 93 with increasing cognitive impairment. We’ve sort of split responsibilities between us, DH does his finances as he’s an accountant, SIL does his shopping and batch cooks for him as she knows what he will eat and I take charge of anything medical with my DD’s help(paramedic and nurse by trade), so far it’s worked out with the help of a family WhatsApp group so we all know what’s going on.
It’s been a fine balancing act particularly with my involvement as I’m not a direct relative and DH was a little in denial about his Dad’s mind failing but we’ve played to our strengths.
The neighbours and his cleaner have our numbers and keep in touch with any issues that they notice.
The one thing I would emphasis is getting POA for both health and finance done ASAP before there’s a diagnosis of dementia, it’s been a godsend to us.