Where to go from here?

[poll1]

Mum, who has combined Alzheimers/vascular dementia and other health problems has been in a care home for nearly two years now, a decision we took because my dad, who'll be 94 this month, was finding that the caring was taking a toll on his own health.

Physically, Mum's rather better now than she was two years ago. However, she hates, hates, hates the home and visits invariably follow a relentless, miserable loop of aggressive and unhappy questioning. 'Why am I here? Why are you keeping me here? When am I going home?' It's absolutely not possible to distract her.

It's the Law of Unintended Consequences, I guess. Mum's physical health has improved and actually Dad's has, too, but he visits about four times a week and now finds the visits very stressful. After two years we have to acknowledge that she simply isn't going to settle. I think it's time to consider another way, but I have no idea where to start. I feel a bit defeated, in truth.

 

[RedLou]

Can you be sure she'd be happier in some other place? My father is miserable in the long-stay hospital ward where he is now, and where they've done a sterling job stabilising his physical ailments. He doesn't want to move to the care home which is next on the list. He begs to go home with carers. However, that was the system in place when he almost starved himself to death/fell over constantly, and had to be admitted to hospital. (He is not in the same country as me.)
One feels cruel by not giving in. But I also remember that when he WAS at home with carers, he was miserable also, often ringing me to tell me so. When he asks me to go home, he means he wants to go back into the past, when he was well.
I've said this before on here. You come to accept you can't make your relative happy. You can, however, ensure they are safe and as well as they can be. That's all. It's a difficult thing to live with, because we all try to make our loved-ones happy.
If you can afford enough carers, who will ensure your dad's health and happiness is not impacted, and your mum would accept them, I suppose that might be one solution. But also, it might not. You might find that you got her home and she still was unhappy. Why wouldn't she be? This illness steals happiness.

 

[Witzend]

I do so sympathise, since my mother was much the same for what seemed ages, too. As soon as I arrived she would start with, 'Get me out of here! I hate this place! It want to go home!' etc. She could not be distracted, either, and visits were so stressful sometimes I just couldn't face it and chickened out. But then she had often been anxious and/or frightened at home, often of things she could not even name. She could not begin to accept or understand that there was anything wrong with her, although TBH we had left it too long before finding a CH - she was no longer safe to be left at all.

I know it won't work for everybody, but what I eventually did was think up some inventive 'love lies' aka blatant fibs to pacify her. Since she had always been an inveterate 'mover' I told her I was looking for a nice little flat for her, just down the road from me, and as soon as I found a really nice one, we'd go and have a look together. Because her short term memory was non existent she never remembered that I'd the same before.

Obviously this wouldn't do in your circs, but could you think of something else? Some people use 'stalling tactics', e.g. there are plumbers/decorators etc. making the place uninhabitable for the moment, but as soon as they've finished... But of course this will only work if someone's short term memory is already very bad. Or some people 'blame the doctor', 'just until you're better/stronger/while they sort your meds out...' but again this depends on the state of short term memory.

How is she when you're not there? Sometimes people are reasonably OK until family turn up, when they get it with both barrels, so to speak.

With my mother, it stopped quite suddenly, after a long time, when virtually overnight she no longer recognised me as her daughter. I turned instead into a 'nice lady' who brought her chocolate and made her cups of tea. Of course it was terribly sad that she no longer realised who I was, but I can't deny that it was a relief when the endless 'Get me out of here!' finally ceased.

It is so very difficult and upsetting - I do so feel for you.

 

[Owly]

Visit less. It may sound cruel but it might be the only way to lead her to more contentment. She is being reminded 4 times a week that there is a life going on without her, in the outside world that she no longer belongs to.

If you visit less, she may forget who you are. She will have made the care home residents and staff her new "family". That could bring a kind of contentment.

I know it's counterintuitive to do this but practically, it makes sense.

 

[poll1]

Thank you, everyone, for taking time to respond.

I've always felt - and have kept explaining to Dad - that Mum isn't unhappy because she's in a care home, she's unhappy because she has dementia. She was already unhappy much of the time at home; it was the change in her personality that caused him the worst of the strain. So changing the arrangement wouldn't guarantee that anyone would be any happier. But it won't leave me alone, the continual nagging conviction that there has to be a way to arrange this so that everyone isn't miserable all the time.

Having said that, the staff assure us that 95% of the time she's perfectly ok. Dad has a 'they would say that, wouldn't they' attitude to their assurances, though. I know visits (especially his) are a trigger for the loop-tape of misery. He's so devoted to her and feels guilty if he doesn't visit. He has at least cut them down - there was a time when he was going every day.

I'd probably feel better if I had at least some idea of what alternatives might be. Obviously, 4 rushed care visits a day isn't an option. Social worker makes kind noises, but doesn't seem to have any ideas. Their house would be problematic - cluttered, no downstairs loo...

Need to stop my own loop of incessant rumination. Thanks again for your kind responses. Appreciated.

 

[Owly]

I see from your past posts that you asked about this 2 years ago, when Mum went into the home .....

"Mum has now been in her care home for just over a month and Dad and I have a dilemma.

We hear from the staff and from her many other visitors that she's usually in good form, integrating with other residents and relatively well-settled. 'Nine tenths of the time, she's great,' is what the staff say, and I believe them.

However. When Dad (92, bad heart) and I visit she becomes aggressive and highly distressed - tearful, upset, threatening divorce, suicide - you name it, we've heard it. We keep the visits short and I seem to have the ability to let the abuse roll off me, but its clearly an awful experience, both for Mum and Dad, and leaves the care staff with the job of coping with her afterwards.

My question is this. Has anyone taken the decision not to visit their relative because of the distress it causes? We know she's generally ok when we're not there - would it be kinder to let it go at that?"
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It seems that Mum is OK in her home, even 2 years ago. At the top of this page, you said she hates it, and she is never going to settle. That appears to be the case only when you and Dad visit, doesn't it? The rest of the time, and with other visitors, she's OK.

Mum is holding a grudge/resentment that you put her in there. So she gets angry when you turn up. Some part of her wants to make you and Dad hurt. There is a concept called the Pain Body that a guy called Eckhart Tolle talked about and you can read about it online or on youtube.

The issue is really not about moving Mum to another place where the scenario will repeat again. Or for her to live with Dad again, so that she can upset him with her misery.

The issue might really be: how to make Dad happy about not visiting Mum. Can you get the staff to take some photos or a little film of Mum enjoying herself with the other residents? Or sneak in and secretly watch her being quite happy, and then sneak out again, not actually visit her.

 

[pippop1]

Or find Dad something to distract him so that he can't feel guilty about visiting a bit less.

Perhaps he could go to some kind of club once a week and/or pursue a hobby he enjoys or even start a new one (learning to use a computer so he could take in pictures to show her or shop for her online?). Or could you take him out for lunch once a week, something like that?

 

[poll1]

thanks all - sorry for delay in response.

The 'love lie' is that she is in the home while the doctors are trying to find out what is wrong with her heart - which in fact isn't completely a lie; we are indeed trying to establish why she keeps passing out; it was one of the reasons it was no longer safe for Dad to look after her at home.

Needless to say, she's not having any of it. Because in her mind there's nothing wrong with her.

Dad's quite astonishingly engaged & busy in his church & community (he's a retired clergyman but remains active & helps out with services when he can) but I think - and he is coming round to it - that visiting less is something he's going to have to give himself permission to do. Mum's sense of time has vanished; she doesn't remember when he was last there whether it was the previous day or longer ago than that. He had an appalling visit on Friday which distressed him terribly (Mum was accusing him of keeping her in the home because he's got another woman!) but he can see that his visits don't help either of them.

I've realised that what's troubling me most isn't that she's struggling to cope with the situation, it's that he is. And other than buzzing up & down a couple of times a week (they're a couple of hours away) & giving him as much support on the phone as I can, I feel pretty helpless.

Thanks for the opportunity to vent.

 

[Linbrusco]

Poll1 I am not at the same stage yet that my Mum is in a care home, but I do feel you have done all you can do as far as your Mum.
I may have missed it in your posts, but do you visit with your Dad or separately.
Is your Mum the same regardless of who visits?

Photos or video of your Mum at the care home in her better moments may convince your Dad that the care home staff aren't just saying she's OK but she is, and it may take a health professional to convince your Dad to cut back on his visits.
Given his own health and wellbeing, this will need to be the focus.

It can't be easy for you least of all travelling back and forth. Best wishes x