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.

Do you, your sister or Dad have LPA for your Mum? Has she had a capacity assessment? If not I would be talking to adult social services in your area and be getting this arranged.

Ditto A care needs assessment for Mum - though from what you have said about savings your parent would be self - funding care.

Your Dad also has the right to have a care needs assessment, as do you and your sister if you do a lot of care for Mum.

If your Mum does lack capacity after being assessed then you or your Dad can only make financial and welfare decisions for your Mum if you have Deputyship for finances and health and welfare from The Court of Protection. It is a ball ache, but definitely worth pursuing, so you can make decisions for your Mum regarding her care and finances. Without either LPA or Deputyship in place social workers can and will make decisions regarding your Mum's future care.

It sounds like both of your parent's would benefit from living in a care home.

Would your Dad be open to having a months trial with a care company or a live in carer? The carers you have are taking the absolute piss you and your family could receive much better care for the same or a little more money.

Your Dad a Carers Assessment. The Care Needs Assessment is for your Mum's.

I honestly believe that is what will happen.

I hear so many stories of people really coming alive once they go into the right care facility. I know many have an awful reputation but I think it's unfair that people say all care homes are bad as you've just proven, some are a life line to people.

I would love to find mum the right care home where she could be cared for an occupied daily. Our carers are with mum for less than 3 hours a day, the rest of the time, when my sister and I aren't there, she is basically isolated and on her own which sadness me so much.

They've had both from ss but due to their savings and current carers in they said all was ok and signed mum off from their services.

I feel the same, it's a constant depression and bloody awful to watch. I fear dementia, absolutely terrified that it will not only affect me but my kids too. I have already made plans to make sure they don't feel the need to care for me. Dementia is insidious, goes on for an eternity and has a terrible ripple effect across the family.

Can I ask where in the country are you? That sounds a bargain.

I worked for a home care company for 2 years and honestly it was the most soul destroying job I've ever done. Not because of the clients, but the other "carers" if they deserve that title. The good ones are like hens teeth. The majority are in/out as quickly as possible and doing the bare minimum. When my Dad was receiving palliative care at home, we had a care company coming in for 4 visits a day and they were little more than useless. His drug chart never got signed, so we never knew if he'd had his oramorph and he was barely washed even though that was the whole purpose of the visits. I cancelled them as it was just stressing Dad out and me.

Your Mum needs to be in a nursing home. It takes the control away from your Dad, removes the stress out of the house for him, and the staff will get to know your Mum.

As soon as mum was diagnosed with Alzheimer's we went to the solicitors and arranged fully LPA,. Myself, my sister and my dad have this.

Social services have done full assessments on us all and are happy mum's care needs are met via her current care situation. The rest is up to us as our parents have savings and so can fund their own care. They said we can come back to them when the savings fall to £23,250 or something similar. My parents have a lot more than that so it's highly unlikely.

Dad doesn't need care. He is 85 but is in full health physically and cognitively, he's just a very difficult and obtuse man, always has been. He would not be up for any live in carer, he gets very very angry if we ever bring the subject up. He seems to love the carers we have especially when they told him the other week that they see him as a friend (what kind of friend charges you £26 per hour!). It's my sister and I who are unhappy with the care Vs cost.

You need to find a way to force a decision. Hopefully someone will come along with advice on how you can push for a residential care placement if it's clear that she cannot receive the level of care, support and enrichment she needs while remaining at home.

I appreciate your dad may want to preserve their savings, but this is exactly what having a home and savings is for at this stage of life. They are there to provide security and ensure the best possible care when it is needed most.

Mum absolutely does need to go into a care facility now, she is being well looked after because we (sister and I) make sure she is. Don't get me wrong, the carers are lovely, I really like them and they are so kind to mum but they are always in such a rush, come in, get the job done and leave. I want more than that for my mum, yes her physical needs are being taken care of but it goes wider than that and when my sister or I are not there she is sitting in that chair for a long time each day and that is breaking our hearts but our dad is such hard work and makes a difficult situation much much harder than it needs be, he believes she is best at home even if that means sitting in the lounge 12 hours a day.

He is the main cause of our stress half the time.

I really wish there was a way to push this. I feel the only way we'd get mum into care is if something happened to him, I often say to him what would happen say, if you fell and broke your hip or had a stroke etc.

We absolutely went into this as blind as bats

You are doing your best. I might get shot down in flames but I think a Care Company where there is accountability if much better. Twice I have had independent carers who turned out to manipulative and lazy .

I think this is one area where there may be a gap in the law.

Don't be too hard on yourselves. Navigating the care system is an absolute minefield, and it can often be hugely inefficient.

Have you spoken to Age UK or one of the other charities? They often have advisers or volunteers who can provide excellent guidance and may be better at helping you navigate the system.

Parents will often dismiss advice from their adult children, even when they're right. Sometimes hearing the same advice from an someone like Age UK might make a difference.

I would definitely swop the carers if you can.

Yes this, urgently if it’s not already done. All joint current or accessible joint savings accounts to be split into separate individual accounts. The only income going into your mother’s account should be pensions etc in her name. Investments belong to whomever’s name they are under. Property, if owned jointly can be switched to be owned in common.

As soon as paying for care comes into the picture, you have to look carefully at individual assets and income - not joint.

The issue here is you've no one properly managing the situation. You've private carers (are they working for a regulated service?) not working towards any care plan by the sounds of it. There's no accountability on them.

If you properly split your parents assets and income, what would your mums financial situation be ?

Once there is a clear line between ‘his’ money and ‘her’ money, it will be easier for you and your sister to decide how your mums money is spent for her benefit. It won’t be your dad paying for anything any more.

We did this early on with PIL and it made life far easier.

Why are they going in pairs? With my dad we coped with one at a time (4 times a day, and one visit was mostly for company/walks) and he had mobility issues so required special bed, hoist and wheelchair.

could you consider reorganising the shifts using just one carer at a time and adding an extra visit for company and some stimulation? Exercise, walk…

Does your mum have capacity, if she has and she wants to move into a carehome then he can't stop that happening. If she doesn't have capacity have you used the lpa, is it severally or do the 3 of you need to agree, having lpa is to make decisions in her best interests, not his. How are her finances being dealt with, who is paying for the carers.

Why is she on her own 2hen your dad lives there, hy doesn't he look,after her .

He shouldn't worry about that, because your mum's money and his money should be kept separate for care cost purposes

Any joint accounts can be split 50:50 . Anything in your mum's name is hers, anything in your dad's name is his.

If your mum's money gets near the threshold then get a financial assessment from social services.

Yes he does but he goes in the garden a lot during the nicer days then pops in and checks on her. I go round Tuesdays, Thursdays and Saturdays and my sister goes a couple of afternoons per week but obviously we can't be there all the time.

I worry that she spends a lot of time on her own with the TV on. I know dad can't be with her every waking minute but it seems so sad to see her sat there when I pop round, I look in the window and 9 times out of 10 she's there on her own snoozing or looking into space. She does go to a day centre once a week but I feel she needs more stimulation.

Mum has no capacity and she can barely say two words since the fall last summer, she is mainly non verbal. We all hold joint LPA.

I suppose it started last summer after mum came home from the hospital, she was bedbound at the time and needed two carers to hoist her and get her to the bathroom but over the months she recovered physically and became more mobile.

I suppose it's our fault because we should have had a meeting and assessment with the carers to re-evaluate everything but this was all so new to us and not having any experience with care we have no clue or compassions. Also one of the main carers who does the most shifts can't drive so she has to come with another and they then work together.

My parents joint savings were split when mum was first diagnosed and we did everything through their solicitors and dad's FA.