Balancing independence and safety for elderly parents as they become frailer

[Wofflewaffle]

So I’m staying with my 80 yr old parents, and they are currently up in arms because one of my mums best friends has been ‘carted off’ to a nursing home, and no one was told where or when.

They live in a very rural, close-knit community. The elderly person in question was my mums colleague for decades and a real community stalwart. She had dementia and was very frail but coping at home with private carers round the clock. She had lots of friends who visited and gave her lifts and kept an eye out for her, got the hairdresser and chiropodist in for her. None of her children live locally.

She finally agreed to go into a home when her eldest daughter (allegedly) said ‘how can DH and I ever go on holiday / enjoy our retirement when we’re worrying about what might happen to you at home?’. Then it was all arranged, none of her friends were given the chance to say goodbye or told which nursing home she was going to. None of her children (who all know my mum and her other friends pretty well) has been in touch since she left. My mum only found out where she was via the local grapevine.

Anyway, it raised some interesting questions for us, as my parents are just starting to get a bit less mobile / frailer - namely the trade-off between independence and safety.

I personally would have gone on holiday quite happily if my parents were in the situation their friend was in - living in her own home, not distressed, frail but supported both formally and informally. No, it wasn’t risk-free but life isn’t a risk free endeavour. I would not want my anxieties to overule my parents being able to make this choice. But I’m a pretty relaxed person overall. My sister OTOH is a real worrier (diagnosed GAD) and has very controlling tendencies of left unchecked.

How have you navigated this trade-off?

I’d take this with a very large pinch of salt! Was it direct from the elderly person that there had been no crisis or fall? And she has dementia? So possibly has no memory of any of these?

It’s far more likely there’s been an increasing series of crises which have made life very very difficult for her children (being a carer at a distance is a nightmare and there is a lot of organisation required to have someone at home with carers). No one gets “carted off” to a home, the home wouldn’t take them, for a start.

Why didn’t the elderly person let her friends know where she was going? There is so much admin involved in dealing with an elderly person with dementia lurching from crisis to crisis which the children will be bearing the brunt of - and this won’t be very visible to outsiders. It’s not surprising that contacting friends/neighbours isn’t something the children can take on as well.

Also, I’ve seen an elderly person complain they haven’t seen anyone for days, they’re lonely, nobody rings etc etc. When people are visiting and calling regularly. Could this have happened?

I take your point, I honestly do.

In this case she’s had two private carers who were with her morning until evening each day. My mum, her friend and one of the carers shared a profession (teaching) so mum and the carer actually became quite good friends so she did know a lot about her ongoing situation. The older person in question was a stalwart of the local community and had loads (maybe too many) of visitors. My mum used to organise the mobile hairdresser for her, and drive her to medical appointments, along with a team of other younger-old-people.

The one thing she didn’t have is an overnight carer and in terms of worry that’s probably what tipped the balance for her family.

She knew it was happening, but didn’t know the name / contact details / exact date of departure to pass on.

I didn’t say she was ‘carted off’ btw, that was another poster. I did say my parents feel she was guilt-tripped into agreeing to go into a home, which probably is the case but maybe that’s what it takes…. My mum and I are going to go and visit her next week (she’s my old primary teacher) and I suspect I will end up on the side of the children if she’s as frail as I imagine she is. And if that is the case then I will tell my parents that, especially my dad who I suspect is gearing up to tell my sister and I that he will never agree to going into residential care 🙄 but I might be wrong.

@P00hsticks ha! I have had every one of those calls too. Even the incontinence pad down the loo.

My mother lives on her own and has no carers at the moment but she cannot be left with no one calling for a day let alone a week. I cannot go off and have a holiday knowing if she may fall or not. I feel guilty if I don’t call if someone else has been there. I am retired and should be swanning around the world, but I have to do it in school holidays as that is when my sister can step in. It is very difficult to balance independence with safety. My mother has vascular dementia and Alzheimer’s and is getting worse. I think that by the time Christmas comes, she will need carers.

Please be aware that after a few days/weeks of regular meals and fluids at the cafe home, she’ll probably be much better physically than she was at home. DPs had carers allegedly cooking for them but demented DF wouldn’t let them throw any of the rotting food out and insisted on making meals himself for both of them. Physically they both perked up a lot in the care home.

Its good to have the conversations with your DPs now. Rather than focusing on their independence, I would focus on yours. I would state what you are prepared to do and the frequency of visits ( remember to factor in holidays) and what you will not. Nobody should be forced into a home, but equally no working adult should be pushed beyond their limits of endurance unable to keep their job ( and their own means to fund their retirement) due to elderly DPs. Unfortunately once dementia is in the mix they don’t realise the burden they are putting on you, and even without dementia many very elderly people become incredibly selfish.

I don’t think anyone puts their elderly parents in a care home against their will unless it’s necessary, have you seen how much they cost!