Sorry, this may be a long ramble and I apologise in advance but looking for advice or others lived experiences with this kind of thing.
My mum is 83 and has advancing Alzheimer’s. She lives at home with our 85 year old dad who does his very best but at the same time he is very stubborn and difficult to deal with (I have written about him in the past).
All was going ok (ish) until this time last year when mum fell in the garden, splitting her forehead open, dislocating her knee, breaking her hand and worse still, fracturing her neck. The doctors at hospital gave a depressing prognosis and we were expecting her to die within hours but she didn’t (poor mum has a strong will to carry on). She ended up in a hospital ward which was so detrimental for her dementia. She went into hospital fully continent but obviously there is no one to one care and because the smash to her head caused concussion she couldn’t tell them she needed to go so would let her soil the bed and then just clean her up. This was fine for them as they have staff on hand but it has been an absolute nightmare for us because she has been double incontinent ever since.
She was discharged a month later with an at home discharge care package for a month. This lasted two weeks and we had to let them go, they would turn up at all times of the day, sometimes not coming until 11am for the first visit then 11pm for the last, or coming early and putting mum to bed at 5pm and there were a few occasions when they didn’t turn up at all. We had to get mum’s previous carer in (she used to come every morning and help mum shower), she was happy to come back onboard but only wanted to do the morning visit Mon-Fri and wasn’t confident doing it on her own so we agreed she could come with a carer friend (I know this lady). So we then had to scrap around finding someone for an afternoon visit, evening and weekend care. Tbh, it needed to be done quickly and in hindsight we went about it all the wrong way, we should have gone with a care company but my friend knew a friend etc and so on top of the two morning carers we have ended up we a group of 4 other people who are all self employed but come together to work on occasions. They are all lovely people and whilst mum was bedbound and we genuinely thought she didn’t have long left it worked well but over the months mum started to pull out from this concussion type situation where her dementia seemed to have greatly exacerbated, she was able to walk (aided) with a frame to and from the bedroom, bathroom and lounge and was able to sit in her recliner chair in the lounge every day and that has now become her daily routine. The first two carers come every morning, toilet her, shower and dress her and take her to sit in her recliner. The next visit is around 2pm when two of the other carers come and take mum to the toilet and change her pull up (she has often soiled herself or needs the loo), then the same two come around 7.30pm, toilet mum and put her to bed.
My sister and I come round all the time and help with everything apart from the personal care.
Before this disaster mum was going to a day centre twice a week where she flourished. Dad is very tight with money (always has been) and hated spending money for this but after much perseverance we managed to get him to agree mum could go back once a week, my sister and I were very concerned how boring it must be for her sitting in her chair day in and day out. So she went back once a week from last October, the lovely ladies there come and collect her and bring her back. This gives mum a different change of scenery and dad some hours to himself. Sadly, in January of this year mum ended up in hospital again due to an infection, which they never did get to the bottom of so I fought to get her out asap to avoid a repeat of last year’s disaster. Dad made a big song and dance that she shouldn’t go back to the day centre as it was costing him so much (£100 per day) and as her dementia is advanced now she probably doesn’t take anything in (this couldn’t be further from the truth) and he’s already spending a fortune on care. Admittedly it does cost a lot - two carers three times a day is costing just around £1000 per week.
However, we have managed to persuade him to agree for mum to go back and over the last few weeks she has been going every Friday.
The problem is that we don’t think it’s enough to occupy mum. Apart from this once a week ‘treat’ she is still just sitting in her recliner all day, every day and imo, looking throughly bored, she sleeps a lot which dad says is because she’s unwell but when I spend time with her I put music on YouTube and she sings and moves her feet around, dad just sticks day time crap on tv (often the bloody news) then potters about the garden and house and pops his head in now and then and inevitably she’s asleep, I mean who wouldn’t in that situation?. When I’m there I do also try to get her in her wheelchair and in the garden (although that has been tricky with these heatwaves). The other day I got her onto her frame and walked her up and down the hallway and she seemed so lifted and was quite animated. Poor mum cannot communicate since last years fall and only says a few words so I worry constantly that she is frustrated yet can’t say.
The carers are all wonderful but being self employed they need as much work as possible and they seem to come in, get the job done and leave asap to go do their next job. They never ask my dad if there is anything else he wants help with or offer to make a drink or some lunch etc. My concern also is they often charge for an hours work when in all honesty they’ve only done, say 40 mins. Also the two how come in the mornings work the exact same hours yet one puts in the exact time she’s worked but the other rounds everything off to the nearest hour so we end up paying her more per month than the other yet they work exactly the same time. I know we need to say something but it’s awkward as they are friends of my best friend.
Is this all normal for care? It’s something way out of our life experiences and we are not sure if we should be asking for more? My sister and I want try a care agency because having so many fingers in the pie as such is quite exhausting. I have some carers requesting payment monthly yet others want it weekly, I did say the other week I wanted to pay everyone monthly but some made a fuss and said they only want to be paid weekly. Also one of the morning carers goes on holiday a lot so we are always having to ask the others to cover her. I don’t know what to do tbh, dad is elderly and gets confused with it all, my sister works full time and I have my own health issues I’m trying to deal with. It’s all so very stressful.
In an ideal world we would find mum a lovely local care home but dad will have non of that, he won’t even agree to respite care so I’m thinking do we stay as we are and limp long but then poor mum is just stuck in the lounge most days or do we get a care company in?
It’s all so so draining, mum was diagnosed 8 very long years ago. I truly hate dementia and the ripple effect it has on everyone.