Dementia dilemma

[doodlyfiddly]

It has become clear over the past year or so that MIL has some form of dementia. She has, until now, resisted any suggestion that she is confused (etc) and will not see a doctor. However, over the last couple of weeks, with FIL away in another country, she's really gone downhill. He left because he couldn't take it any more (including getting violent with him) I kind of don't blame him but am cross that he just cleared off whilst we were on holiday, leaving her on her own and us to sort things out.

There's a lot of background to this but, basically, MIL has never been the best of company. She was always suspicious, always fuss-fussing, never stops talking etc. All these traits are now much more exaggerated. She is obsessed with things like bowel movements and her DH having affairs with barmaids/neighbours (he's not). She repeats the same things over and over, is very forgetful, confused and tearful.

A few days ago, she asked my DH who his Dad is (it's FIL), how many children she has etc. Pretty fundamental things. She literally cannot remember one thing from one minute to the next, has no idea what day it is or what her plans are.

She's been on her own for about 4 weeks now and she is just not coping, as she's now realised there is something wrong and she's scared. My DH has been great with her as he accepts (where he used to be exasperated by her) that it's not her fault that she's being annoying, for want of a better word, & she can't help it. After the 'who is your Dad' episode, he asked to bring her here to stay for a couple of days. What else could we do?

However, when she was here, the main caring for her was done by me. DH was at work. We have a 6 year old DD just for info. It was me to had to listen to the repetitive running commentary, answer the same questions over and over and over again, get followed around the house and try to console her when she was upset. I feel so sorry for her and for my DH and I am very fond of her, but I do not want to become a carer for her and for her to stay here long term.

It's looking as though FIL will not be returning (& if he does, it will be for a few days here and there).

I can see what's coming. My DH is torn, although we haven't really discussed things yet, and has said a couple of times 'how can I just leave her on her own?'. We always said, until the shit hit the fan, that we could never have her live with us as she's just too difficult. She went home today, but will be coming back here on Sunday for a couple of days. But where do I draw the line? Am I mean to say I do not want to care for her here? Do we not deserve not to have our home-life so disrupted? I feel selfish, but also like it's self-preservation. After a couple of days here, I already have a good idea about what it would be like to have her here all the time and I don't want to do that. Would anyone else feel like this or am I being selfish?

We haven't yet discussed long term, but my DH has started doing some research into private care homes which my PILs are lucky enough to be able to afford, but I can't begin to imagine being in my DH's shoes and having to pack my mum off to one. But I know that her being here would cause such a strain on us a a couple and as a family that I have to stay strong and not give in because I feel guilty. At the end of the day, I don't want to do it and I think (for my own sake) I'm going to have to stick to my guns, but I know how awful that sounds. Any advice or experience gratefully received.

You're not being selfish. This is a heartbreaking situation but your mil needs specialist medical care. You are not qualified to do this, esp as she gets worse.

Think of it as finding the best possible place for her to live for the rest of her life. It is better that she moves somewhere where she will always be comfortable than that she moves in with you for a bit and then has to face all the disruption of another move

Also, if you don't have power of attorney yet then see if you can before she gets a diagnosis. Then get a diagnosis.

I'm sorry you're going through this

After a couple of days here, I already have a good idea about what it would be like to have her here all the time and I don't want to do that.

Doodly - you probably don't have a good idea. Dementia is progressive and, if you think this stage is bad, believe me, it's going to get a whole lot worse.

I firmly believe that it would put an intolerable strain on any relationship/family to have a dementia-sufferer living with them. You should start looking at care homes. It's just a question of finding the one that suits your mil best. There's no reason why she couldn't still come and stay with you as long as she is able.

Doodly - there's a dementia section in Health. Have a look at that and you will get an idea of what lies ahead.

My mum had dementia for 3 years before she died. My dsis and I found a good care home for her where the staff understood dementia and all its horrors. Neither of us could have coped looking after her at home. If your mil is mobile you would never be able to take your eyes off her when the disease progresses. It is heartbreaking but you need to take the best decision for you and your family.

I am sorry you are going through this, it's a horrible situation. We had the same with my dad, he had Alzheimer's and vascular dementia. You must absolutely not feel guilty about considering the care home option, your MIL would get the best of care there. You need to get her a diagnosis asap, it from what you've said it definitely sounds like dementia.

My dad went in a home and it was the best thing we could have done for him, there was no way my mum, or I, could have looked after him. His home was more like a hotel. Don't believe the horror stories about homes, most are fine, and the staff at my dad's were lovely. Think about what is best for the person affected, and believe me it is not to live with you. Please don't feel awful, it is for the best all round. I hope you get things sorted.

This is just the start. It broke my heart when my nana moved out of my house into a care home. I wished that I, and DH & the kids, could have looked after her longer... if she'd lasted a week or month, or even a year, more we probably would have muddled through. However she survived for another 9 years, getting steadily worse.

You have to do what is right for all of you, this could be a very long road.

OP you are not being selfish - you are thinking about what is best for your own family in the long run. Some (a few) people are cut out for this sort of stuff and will not hear of anyone else looking after their parents/in-laws - and give up their own lives to do so. I am not one of them and it sounds like nor are you and that is fine. Please don't feel guilty. Unless this is absolutely what you ALL want (I'm sure deep down your DH doesn't want it either) you are doing what is best for her too. Good luck with it all x

You're right, stonecircle, there's me just thinking about how she is now, not how she will become. Thanks to those who have replied.

Would your dh making her a Dr's appt be a good place to start?
With a medical diagnosis rather than the opinion of family, it is a better footing to start looking.
Then get in touch with the social care department where she lives.
Look into what the Alzheimers Society or Dementia Association can do to offer support and guidance.
Your dh also needs to speak to his Dad (and siblings?) to make legal and financial decisions.
You are definitely not being unreasonable in being clear she cannot live with you for any length of time. It is difficult enough now, but isn't going to improve, and will most likely progress.

You absolutely should not feel guilty and have to do what is right for yourself and immediate family. Dementia can be extremely challenging and you can better access sources of support if you do have a diagnosis confirmed. Approach GP who can refer to psychogeriatrician.

Re the PoA, I suspect she already lacks capacity to appoint attorney, but even so can still appoint deputy through court of protection which is effectively same thing.

As her illness progresses you won't be able to go to parents evenings, sports days, school plays together. Somebody would need to be with MIL all the time. All the time.
It would blight dd's life. It will exhaust you
Taking care of someone takes many forms and if MIL can have professional care with family attention frequently and happily, that would imo be best. If you can find somewhere very local for care so you or DH can pop in for 30 minutes most days for a cup of tea then that's good.

Maybe think about her having vape in her own home for a while (if she is safe) my mum has someone come three times a day. I thought a home would be better, but my brother pointed out that she would feel that she had been given a sentence, locked away with no friendly faces and hardly any of her things around, so for now the home visits are working.

care not vape

You aren't being selfish. You are protecting your family and you are protecting her. She needs specialist care and your family needs a happy, stable home.

It feels selfish to not have her partly because we're socialised to think it's the best thing to do, partly because you feel compassion for her, partly because you feel compassion for your DH, and partly because it feels like you're prioritising yourself over her. And because you don't want any of this to happen - you don't want her to be ill, for her sake alone.

But in reality, she needs specialist career care and you, your DH, your DC and she deserve an environment where she is properly supported in a safe way by a team of people, not one knackered woman who has other responsibilities.

for you all.

In the nicest way, what was your FIL thinking would happen when he left her on her own?
Was he expecting your DH and siblings to take care of her?
What does he think is best?

There's a lot of support that could be arranged in her own home. Care workers visiting. Meals delivered. Assistive technology eg door sensors that alert you if she goes out.

You definately need to speak to her GP and also social services via your local gateway to care. They can advise on care ontion including care in her own home and something called telecare which can include things like falls detectors, door detectors to alert you if she leaves the house etc. If shes prone to wondering then you can get watches with GPS sensors in them in case she gets lost/goes missing. Social worker will be able to give you lots of advice.

You are absolutely not being selfish. My nan (dads mums) had dementia and moved in with my parents some years ago. My mum took on all the care of her and it really took its toll. It's a degenerative condition. What you may think now is tolerable will not be suitable around young children. My dear nanny was always such a polite, well to do lady. But she became so aggressive and rude in her later days. And no filter whatsoever. It's so unpredictable. Be kind to yourself. This isn't the same person you knew before. It's a horrible disease.

YANBU or selfish.

We have experience of this. Your DMIL is not going to get better. The person she was is being eroded. To put it bluntly she is dying by degrees. If this were kidney failure or liver failure you would want her in the best place to care for her. As it is, she is suffering from brain failure.

Caring for someone who over time loses boundaries, sense of time, cognition, continence breaks people. SS funds are limited so if there is family who can be encouraged/emotionally blackmailed into taking in a family member then they will do that. DH and his siblings had to be quite firm when DMIL was suddenly left on her own when DFIL died.

FIL sounds awful! It must be tough but surely he should have put something in place before he toddled off. What a nasty thing to do!

It's for your DH to decide. If he can't care for her, then she needs to be in a specialist home/centre. This is not on you! Women as the family carers are long gone. Don't get trapped.