How to support MIL living on her own if she turns out to have dementia

[BishyBarnyBee]

MIL has always been a massively strong and independent character. I am very fond of her, and we have spent a lot of time together over the years. We live 3 hours away but get down there regularly.

FIL died in December after 18 months of dementia. It was horrendous watching an 84 year old woman try to care for him, even with money for carers and a lot of family visits. It now seems likely that she also has dementia.

I'm just wondering how this usually pans out. If you have loved ones with dementia living independently in a different city, what does care look like? It is so different to him having her for support, even though that was very challenging at times. Any thoughts or advice?

Thank you.

I’m so sorry you’ve got this worry.
We’ve been through it all twice, first FiL and then my mother. We took FiL to live with us once we realised what was happening, but were frankly clueless about the realities of dementia (‘Just getting a bit more forgetful - how hard can that be?) - but soon had to learn the hard way and after about a year I was on my knees with stress and exhaustion (dh was away for work a lot of the time) and we found him a lovely care home - no easy task when he was still very physically fit and like a caged wild animal if not allowed out.

With DM a few years after FiL died (she lived 60 miles away)I don’t mind admitting that there was no way I was doing that again. I did love my mother but she was never the easiest person at the best of times. Thank goodness she already had a wonderful cleaning lady who came 2-3 times a week, and I went down for weekly ‘sleepovers’ with the odd extra visit thrown in, and Dbro, who lived a bit closer, would call in regularly. We were ‘lucky’ in that she had become somewhat agoraphobic, so at least wandering out of doors and getting lost, was never an issue.

Eventually, though, it became clear that she simply wasn’t safe to be left alone at all any more, so the long search for a suitable care home began. Like FiL was self funded, so we counted ourselves lucky to be able to choose the time and place. DM was always unable to accept that there was anything wrong with her though - even when she could no longer even make herself a cup of tea - so getting her to the CH (which was brilliant, purpose built for dementia) and the first few months were far from easy, but by then there was simply no alternative.
It was a measure of the excellent care she received that she lasted very nearly 8 years, until she finally died at 97.
It truly is a thoroughly horrible bugger of a disease.
I wish you all the very best.

@BishyBarnyBee I think you just have to take it one step at a time or you will be overwhelmed. Dementia is more than just forgetfulness and the best thing I have had is brain education! The condition can affect all sorts so worth having a full awareness. The diagnosis would be your first step, then application for attendance allowance and consider how she will be cared for an where she will live. I have had much advice against moving her in with me and my family but you might want to consider sheltered accommodation if she can't live alone without support. I use the attendance allowance to have a personal assistant for her. It is working out amazingly well so far. She also has a cleaner and gardener. I live 3 hours away and to be honest, the distance can be an advantage. She is getting a lot more support from others because I am not there. It's all very sad but it's a fact of life and it has to be managed in the best way we can. Best of luck!

Unfortunately, there will come a point when staying at home just isn’t tenable. Carers usually only come in for four brief visits a day - breakfast, lunch, dinner and bedtime. They can make sure medication is taken and meals are set out but beyond that, that’s a lot of time alone in the house.

My mum went through this, trying to care for my Nan after my Grandad died, and it nearly killed her. She’d spend all day in their house, go home and then face a barrage of phone calls that Nan couldn’t switch the TV on, accusing her (and other family members) of stealing items that she’d simply mislaid, you name it. As the dementia progressed, they had to find a care home for her own safety. Even then, she lived for another five years.

It’s such a cruel disease - I’m really sorry you’re going through it.

There’s a lot of technology available, eg cameras, sensors to see whether she’s got up today, speakers to remind her to lock her front door.

It’s going to be difficult, it would be much easier if there were someone nearby who could pop in.

Most important is don’t feel guilty. There will be times when you feel “if only I’d been with her, we could have avoided this”. But you’re not near her, you can’t uproot your life for her, and you’re doing what you can. You need to preserve your sanity too.

Practical point - if you haven’t already, fit a key safe.

If you haven’t already, apply for LPOAs both health and financial. The problems that can come about when someone eventually loses capacity can be immense.
I’d also arrange a ‘cleaner’ for her once a week. Someone who can pop in to just check up on her.

So sorry that you're about to go through this for a second time. I'd second getting the LPA's in place for both financial and health before she gets a formal diagnosis. Things will be much more difficult and more expensive if they aren't in place and she's awarded a Guardianship.

Thanks everyone. She has done all the paperwork as she ahs been very aware of this since FIL started showing signs. She was always very down to earth about it - just put me in a home, I'll go to switzerland...but of course now it's happening she desperately wants it not to be, and is in denial or even trying to hide it - different family members have different bits of the picture and she has not told us about some quite tricky situations she has described to her friend. It's very sad to see such a capable and confident woman reduced to a shadow of herself. But you all know that, you've been there. Thanks again.

I would look at assistive tech in the first instance - ring doorbells/sensors, signs up around the house for her. Dementia clock can be set up with reminders for medication, to have a drink, a snack etc. Make sure neighbours have spare key.

Ask for referral to older persons MH team, and ask for a MH OT dementia assessment to look at executive functioning - safety around using kitchen equipment and so on. Ask for social care assessment of need for the LA and be present for that.

This will help inform level of care needed atm. Some people choose to opt straight for care home to reduce further change, but many people can stay at home with support for much longer. Paid carers, day centres etc. Look at local charities - Age UK and others - sometimes they run a carers or befriending scheme. We arranged a lodger for my relative who paid reduced rent to keep an eye on her in the v early stages of her dementia. He was lovely, and he stayed for 10 years in the end, firstly not paying any rent and then us paying him. She eventually went into a care home, but 5 years later than she would have needed to had he not been there. For the last few years, she also had carers for personal care etc, but he sorted meals/ medication/ safety etc.

It is worth looking at care homes now, maybe consider respite. Some people go into respite and stay. I would look at ‘dual registered’ homes so that she would not have to move if her needs increased from residential care to nursing care.

Best wishes to you all.