Has anyone got experience of this? I have been through this with another family member and now my mother.
It is extremely difficult to get her to accept even a minimal amount of care at home. Really hit and miss as to whether she will let carer do anything day to day. I live a long way away and can only visit fortnightly. She will let me do everything.
Now with continence issues among other things I am seriously considering residential care near me. The thing is I anticipate that she won’t let care staff in a home help her either (as was the case with another family member with dementia) so I will probably still end up going in to change and wash her - and probably to make sure she eats as well.
It’s not practical for us to have her at home. She couldn’t move to independent living near us as I think it’s only the familiarity of her home and routines that keeps her going where she is. She is not social and will resist going into a care home.
Anyone got a parent in residential care that they still have to do the care work for? Thanks for your comments!
My mum was physically disabled, refused carers, only wanted me.
Then I had major surgery when she was also ill. Faced with the very real prospect of residential care or carers, of course she chose carers!
Thanks, both! I have been able to work on some strategies with our home carer with some success - but still not enough now that Mum’s needs are increasing.
Bowlingbun - that sounds like a very demanding situation you went through. I think I need to work on Mum understanding the reality of her choices now.
Melly 1 - thank you! Do you know what strategies worked for your auntie?
If anyone can point me towards threads on the “wiley” tactics (Lol) others have used to encourage a parent to accept carers’ help, that would be fab!
On the verge of a breakdown, I had counselling.
The counsellor helped me set my priorities, and told me I had a RIGHT to do things for myself. I had never ever put myself first.
Mum had a never ending list of jobs, the faster I did them the faster they came, even when I was disabled mum “saved” jobs for me because I did them better than her carers, when I really needed a carer myself!
The counsellor told me to deal with jobs one at a time. To do them when I felt like it, and never to take on a second before the first was finished, completely. To say, “You asked me to do this, and I want to get it finished before I start something else”. This really worked. I did things at my pace, never ever rushed.
Frustrated at my lack of speed, mum would then decide that she could get someone else in to do things instead. Result!
Wow, that’s great that you were able to find this way through, bowlingbun. Such good practical advice from your counsellor. Thank you so much for sharing it. x
It really worked,
I wish I’d just had this advice in 1976, when we came back from a long working holiday in Australia.
We had a wonderful time, wanted to settle down and start a family, having earned enough on our travels to buy our second cottage mortgage free, even if it didn’t have a flush toilet. (It has 3 now!)
It was mid way between our parents, roughly 4 miles in each direction. As they became older, the jobs came faster and faster. None understood the concept of self employment, they knew we were at home, and therefore regarded us as “on call”. But we had deadlines to meet, sometimes I would be printing my magazine, at home, at 1am! These generated income for our specialist business.
One week we were going to a show on the Friday morning, for the weekend.
Tuesday that week, father in law had a colonoscopy to confirm bowel cancer. He announced at the last minute that he had to have “someone” with him overnight - so he had to come here to sleep. Goodness knows how many times he went to the bathroom, always putting the main light on, never the noiseless shaver light. Thursday the same week, mum went for a carpal tunnel op. Told me she was staying in overnight, it was “all arranged”. I had to take her in. No mention of the distance to the ward concerned. On arrival, mum demanded I push her in a hospital wheelchair. The last thing I should have done, having just had a gynae repair op. Only chair available had a semi flat tyre. Mum had stubbornly refused to have her own chair. On the way home, I decided to check arrangements for the discharge, as mum used a Zimmer frame, but couldn’t do this with one arm in a sling. The ward sister told me it was DAY surgery, mum would be discharged in a couple of hours and I HAD TO LOOK AFTER HER. Impossible as we were going away, and the show was work related, so couldn’t cancel. In hte end I rang the CEO and complained that no one had realised that mum would need carers with an arm in a sling. They kept her in overnight and carers arranged. In between all this I was packing a caravan, and then had to drive our Range Rover and caravan 60 miles and be happy and smiling for the customers, then drive home, utterly exhausted on the Sunday evening.
Not long before he died suddenly of a massive heart attack at the age of 58, not long after his father died at 87, my husband said to me sadly “You know our problem? We moved back too close to our parents”.
I’ve been widowed for 15 years, and often wonder if we’d lived further away he would still be alive, to celebrate our Golden Wedding on Jan 1st next year?
I learnt from this forum that you don’t have to be the carer, although you may choose to manage the care. I have been trying this for a while, I see my mum once a week, speak to her every morning. She has been told that she needs to consider some home help (she would be self funding) but she doesn’t want anyone else in the house. I refuse to do it (work full time, and I am not close to mum), so she stays in her house all alone from one week to the next until I pop in on a Friday for an hour or so.
Thank you both for replies. It is hard, isn’t it, Devon Maid but as you say, good to feel not alone!
Thanks bowling bun for sharing your story. You have come through such a lot. I’m sorry for your loss and hope you found comfort in some happier memories on your recent anniversary.
I have had some success recently with just accepting that I will have to talk Mum through changing her knickers as best I can on the phone, with her carer doing her best to put on a wash two days a week and get in some personal care when she can. (Her carer is amazing and is a saint but it’s just too much of a struggle for both of them with the knickers thing.)
It’s not ideal, doesn’t always work, and I’m not sure how sustainable it is, but for now I am trying to accept that I’m doing my best and that’s the most I can do.
Hopefully once she gets used to changing her knickers with the care workers you may be able to phase out your telephone support. It might help too if you always use the same words and phrases each time so they can adopt the exact same words, phrases and routines.
It’s frightening to read some of these posts.
What to do when someone won’t admit or is totally unaware of their needs and has no concept of risk and what’s “acceptable” or the social norm regarding cleanliness etc?
I’m thinking it’s women more than men
My mother doesn’t like me or carers doing anything. She even tries to stop them doing things for Dad, but she’s happy for us to do all the medical /social care coordination and have POA for the financial affairs and look after the house maintenance. When either of them are unwell ,or anything in the house goes wrong she’s straight on the phone, in fact it’s the only time she phones us now. I guess that’s because she has no idea about the financial side or house maintenance as Dad always looked after all of that.
I got my head chewed off the other day because I was filling a glass of water (when we were fitting new half height carer shower doors) and , while the glass was filling, I fished a used tea bag out of the sink and put it in the bin "I was just going to do that" (followed by a nasty little laugh)
I’m with Bowlingburn. How awful to hear a story like that. I have a slowly degenerating neurological autoimmune condition slightly similar to MS and also an increased risk of developing a type of blood cancer.
The only thing hopeful of is that my son doesn’t have a child and expect us to provide childcare.
After 27 years as a a nurse and now this , I’m done with looking after people.