Care at home, not sure if it’s the right care, so drained by it all.

[CateyeKate]

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.

What happens when dad falls ill, and why is he so tight with money

Ask social services for a care assessment and a care directory. There are thousands of companies you can explore. Also try AGE UK for support and advice, they have a befriending service where someone will come round for a cuppa with your mum. Communication is so much more than just verbal.

Also if your mum has mobility, it doesn't sound like she needs two carers at a time? But I suspect they're not going to shout about this because theyre getting paid well (especially the one who is rounding up and not giving the full time she is charging for, cheeky)

Good luck.

Oh, also make sure you look into attendance allowance and carers allowance as you may be able to get support there.

For the amount you are paying why not put her in a home?.

I think you have done amazingly but consistency from a company might make things easier. I’m shocked the day centre charges! Sadly getting people mobile in these circumstances is really difficult with carers and is likely to fall to you. A social services assessment might help determine what she needs. And might add weight to what you say to your dad. That said, familiar carers are worth a lot probably to her as well as you.

That care costs £1000 per week? My father is in a nice Care Home (with nursing and is a dementia specialist with a palliative care hospice type wing so you never need to move) and his fees are £1200 per week. For that he gets all his meals, laundry, cleaning, help with personal care when required (he's able to manage most of the time but other residents need full time assistance), a lovely en suite room, access to activities, garden and company. He has vascular dementia and other serious comorbidities which require monitoring by the nursing staff. He is doing really well. At home he just sat in his chair and slept, now he does chair yoga, plays bingo, goes to movie night, feeds the birds and goes on day trips. It's worth every penny. A good care home would probably improve things for both of your parents.

As a carer (literally on my way to start my lunch round now) I wouldn’t recommend a care home, but she needs FAR better carers than a what she’s got now. Am I understanding correctly that she has 3 calls a day? And they’re an hour each? To compare I have a lady today that has a 1 hour call in the morning, then 45 min calls for lunch and dinner, then a 30 min call for bed. She has Huntington’s so is not the best with mobility, has little to no speech and is very stubborn. But this morning for her hour call I coaxed her into the shower (that’s the hardest part), she had a full wash, hair washed, teeth brushed, clean clothes and pad. Hair fully blow dried afterwards. I got her settled into her chair in front of tv for now. I made her 2 breakfasts after she rejected the first one and a few drinks. Housework wise I made the bed, opened blinds, did dishes, put a wash on. When I do the lunch call now I will change her pad, put sun cream on her, bring her out into the shaded area of the garden, make her lunch which she’ll have outside on the tray, hang the washing out, steam clean the chair she sits on which gets very messy. I’ll sit and spend whatever time is left with her and then bring her back inside (another big battle as she loves it outside). Dinner call is similar, I’ll make a proper (rarely micro) meal that she’ll likely have outside, pad change, dishes and bits of cleaning that need doing, probably floors today. Bed call is a snack, medication, clean pad and into pyjamas and she loves an early night so she’ll want to go straight to bed with a glass of milk. Twice a week we’ll combine two of the calls and she’ll get taken for a meal to the community centre (tbf it’s only £5 per meal and pot of tea), and the other day it will be a picnic in the park or a cafe if the weathers bad. It’s minimum wage no matter what I do, so I could do that 4 times a day, 7 days a week and take home around £250. For what you are paying for self employed carers, they are unbelievably taking the piss.

Do your research to find the pleasant local care home and let her go in for a respite stay and then all will likely become clear for your DF. You are currently overpaying for rather short perfunctory visits. With hand picked private carers you should be including activities and companionship in the list of duties within the allocated time. Good luck. The time comes when you can't do it all and stay sane.

Agency or council home carers will not do other tasks unless it is on their task list, which is ticked & left for the next carer to read.

You could pay for a live in carer, if there is a spare room. But you would still need cover for holidays.

I know somewone who pays £31 per hour to a private care agency in the midlands. So if they provide good care I dont think your overpaying.

You need to consider what happens if your dad gets ill and goes into hospital?

Tbh, I think that's half his worry. He's concerned if he spends too much on mum and then he needs care there isn't going to be enough for him.

Thank you. Mum does get the full AA. We have also had SS come to assess several times but they really aren't interested because my parents have quite substantial savings.

I have contacted a few care companies and although they haven't come round to assess they have all said mum would probably be ok with one carer at a time if we used them. I think some of the issue is connected with our afternoon carers, one of the main ones doesn't drive so they always have to have someone with them which makes things more tricky.

I will contact our local age concern and see if they offer a sit in service.

My sister and I would like this, we feel the time has come and mum would be better cared for and would have far more company and entertainment but dad won't have any of it, he flies off the handle if we so mention it, he is a very difficult man to deal with.

Sadly all the day centres in our area charge. It's £100 per day, £15 for the travel and even £1.50 for tea/coffee!

SS have been a few times, they arranged for hand rails, items in the bathroom etc but not a lot more. Once the determined my parents have savings they were not able to help.

Id be asking ss for a moving and handelling assessment to establish how many carers she needs and what equiptment the carers need.

My sister and I would absolutely love to find somewhere like that for mum, I have enquired at several and looked at a few, some were dreadful unfortunately. I will keep looking for one at that price bracket as it's probably we could pay, after a year of care at home mum's savings are dwindling.

I think my dad is cutting his nose off to spite his face, I totally understand that he would be hesitant and scared of the changes that would come from seeing his wife of 55 years residing somewhere else but he has become so blinkered that just can not see it may do them both good. He is isolated too but by visiting mum all the time he's more than likely to meet new people and other spouses, people going through the same thing as he is but he won't even agree to respite. He shuts us down and gets so angry.

Oh my goodness, I feel like such a fool. You are doing so so much more than our carers. They charge £26 per hour and that's times two as they come in pairs. In the morning they shower and dress her, take her to the living room and then leave, dad says it's often around 35-40 mines one carers charges that the other rounds it off to the hour. Her hair gets washed every few days but no one blow dries her hair. I do that. At 1.30 they come and take mum to the loo, change her pad and toilet her, take her back to the lounge and leave (I'm often there at that time and it takes them around 20-25 mins. At 7.30 they change mum again, put her nightie on and put her to bed. No one ever offers to do a meal or even make a sandwich, no housework at all, my sister does my parents cleaning as she has her own cleaning business.

We absolutely went into this as blind as bats.

What they should do now is to divide their savings between each of them, use mums share to pay for a care home, once that runs out (or at least below £23.4K). she will be funded by the LA. Their home cannot be included in a financial assessment if your dad is living there.
I would get Adult social care involved asap to look at possibilities and discuss finances with your dad.

Yeah I've been slowly losing my marbles these last few years, I just don't want the responsibility anymore, I want to hand it over if I'm brutally honest.

A live in carer was our preferred choice, at the moment mum doesn't need overnight care as she sleeps through and bothy sister and I live around the corner.

Dad hit the roof when we mentioned it, said no one will be living in his house with them!

We would definitely have no choice but to place mum in a care home sadly. We could take it in turns to live there for a while but we both want a life!

I didn't know such a thing existed, thank you.

Look at local care facilities maybe dad can move in too
In a care home they hopefully change when needed or at least check every hour or two not awaiting next visit
Plus social activities on site
Dad may not agree now but at some point the next fall or hosp admission...you need identified care home. So go identify one already

It’s possible that things may get so bad that the decision is taking out of your Dads hands. But that is a long and painful path. It’s just happens to my aunt. Her DH is devastated. But it is for the best.

My nana came along so much in her care home. They did daily activities, the staff or other residents chatted to her. After a few months they let her lay the tables for breakfast and dinner. They had singers come in and sing songs from the war, took them outside when it was nice. If she had hospital or drs appointments they took her to them. She used to think she worked there. The only thing they didn't so was her washing which mu aunty did for her. She had her own room which faced a huge field and she's love watching children play on it or people walking their dog. Per week it was only £200 more than than what you pay now.
My poor aunt couldn't do it all on her own & felt guilty for a while but when she saw how much better she was in there that soon went away. My nana died in her sleep when she was 89. She had 6 wonderful years in there.
You do hear some horror stories abiut some care homes but this one was absolutely incredible. A few of the staff even attened her funeral and we spoke how indebted we was to them for making her life so much happier.

Oh dear, I find this thread rather depressing. 🙁

I can't help but wonder whether either mum or dad is actually getting any enjoyment at all out life in their current situation. I honestly think I would rather die than have to live like that. One of my greatest fears is of having a long, drawn out end phase of life, with physical and mental capacity failing, nothing to do, nowhere to go and nothing to look forward to. 😕