MIL with dementia- visiting

[housesforhomes]

My MIL has bad dementia. She's been in a home for 4 years now. My BIL (retired) has power of attorney and is in charge of managing all her care. He lives 10 minutes away- this is why she was moved to this facility as he was the only one not working who could take on the responsibility. We are all very grateful to him.

DH is a doctor. The last few years have been very difficult as you can imagine in terms of him being able to visit, what with shielding her, covid, and him working 60+ hours a week. We also live a 2.5 hour drive away (MIL used to live in the same town but was moved to be close to BIL)

Anyway things are a bit easier now and DH has been trying to go down to visit regularly every month once or twice.

The home have apparently called BIL and said the visits are upsetting her as she doesn't recognise him. Apparently she's very agitated when he leaves, although DH has said she's fine when he's there. Honestly he's not sure she recognises him most of the time but they manage a bit of conversation and he feeds her lunch etc. There are occasional moments of clarity which are wonderful. He thought the visits were going as well as they could.

BIL is now suggesting DH and all other visitors (us, our teen children, her sister) stop visiting altogether to avoid upsetting her. He's obviously the most involved in her care and is being very nice about it- he's not grumpy or a martyr or anything, just says it seems ridiculous that DH uses 6-7 hours of precious free time twice a month for someone who doesn't recognise him and is in fact distressed after he leaves.
She doesn't really know who BIL is either but he's a very regular visitor so she's happy around him.

DH is really really upset. He's blaming himself for not visiting more although there is no way he could have managed it. He's sad he missed the window when his mum was a bit more lucid (although frankly after covid isolation finished her decline was tremendous) He loves his mum and really wants to keep seeing her - but is he doing it for her it for him?

Are we being unreasonable to keep on visiting?

Oh gosh, that’s heartbreaking. Has your DH visited with BIL to reduce the stress to MIL? Perhaps that’s worth a try with strategies for coping with her anxiety? Typically people with dementia can respond in one way one day and another the next so there may be some scope.

Thinking off the cuff perhaps your DH could leave a little earlier than BIL so she’s feeling secure when he leaves too? Or leaves her at a point when something else is about to happen such as a meal or entertainment.

Definitely discuss with the staff too as they may have more ideas. Just stopping seems very brutal for him.

I hope you find some answers.

Speak directly to the care home.
If her agitation after a visitor leaves is making caring for her very difficult then I would, for her sake, comply with the care home's wishes.

My dad has mixed dementia and is always happy to see everyone even though he doesn't really know who we are. (That might change.)
My mum on the other hand was always very distressed by visits both during and after.

I wish you well OP - it is an appalling condition and so hard for families.
Your DH has to stop beating himself up.
I would get him to discuss things directly with the care home.

Your describe how your MIL illness has progressed and sadly it will, of course, continue to progress. That progression will mean that visits will not stay the same ie. your MIL's reaction to visits and following visits will change as her illness progresses so I don't think it needs to be a case of stopping visiting for good.

Personally I would encourage your husband to keep visiting now and then (as much for his own piece of mind) but not putting himself under too much pressure to do so often with his work and the distance etc.

He could also try different approaches to his visits e.g. Hi, it's Sam - I've just come to play you this music (play CD - maybe a little sing) or "I've come to bring you this cake" or whatever she likes/is suitable. Try not to focus too much on who he actually is/asking her anything or trying to encourage remembering anything which as she struggles to remember will cause her anxiety/distress. I think it would be hard for your husband to stop going unless he really feels his visits are causing unreasonable distress.

What does he do when he is leaving at the end of a visit?

FIL found good-byes very difficult and the care home advised us never to say good-bye but just say we were going to get a cup of tea or to the loo, get up and go with no fuss at all.

This made a massive difference to FIL (who likely didn't know who we were) and his level of distress.

Just to add I would also discreetly chat to the care home staff - make sure you get someone that knows her - perhaps you know the staff that were there when you visited and can ask for someone by name. Then just ask how MIL is after you visit etc (not mentioning what BIL has said). I would want to do this just to check there is no ulterior motive for BIL keeping you all away. If the staff say she was fine (they could be mistaken) but you would then be on your guard and act with suspicion what might be going on.

Thanks both. Calling the care home seems obvious although DH doesn't want BIL to think we're going round him or not believing him- honestly he's a nice man, who has shouldered all this uncomplainingly and is actually quite concerned about DH being exhausted. He's clear that he's a 10 min walk away and retired, so dropping by with his extremely well behaved dog after their walk most days isn't too much of a hardship. He and DH aren't close as BIL worked abroad for many hears and is a lot older but they do love and care for each other. After meeting up over Easter and hearing some things BIL pointed out that DH probably isn't seeing enough of our kids (both children have recently made first XI in school teams and he's not managed to attend one match) . I secretly worry this is BIL trying to shield DH.

This isn't a worry. BIL is loaded and MIL has very few assets left so FH and BIL are actually topping up the care home fees themselves- BIL paying quite a bit more.

This is good advice.

Also the poster upthread who suggested visiting with BIL. We've been thinking it was best to give BIL a break but perhaps this is a solution.

That's reassuring that you don't think financial abuse is a factor and you do believe BIL has everyone's best interests at heart.