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.

It really isn’t that easy, I wish it was. I live just around the corner and withdraw all of my help would cause me a lot of guilt and my dad would hound me, he calls me daily as it is and the stress would probably make him unwell too. I couldn’t live with that guilt.

You have my sympathy, it sounds very difficult. As you wrote, I think being taken more often into the garden and being able to look out of the window would offer your mum more entertainment and even joy. Seeing and listening to birds, watching a cat walk by etc are simple pleasures. Does your dad accept this? I would be tempted to try again to persuade him to move the furniture so she can do this

I will say that I acknowledge we must absolutely change the care situation and this needs to be done quickly. My dad has agreed that we need a family meeting to discuss this asap which we will try to arrange for this week.

Because of situations such as this……..

So, I took a much needed weekend away Friday to late last night. I spoke to my sister and apparently there was an issue with the Saturday morning care. On Friday evening, one of the carers told my dad they were going to have some issues with the care the next morning as one carer was in holiday, one was unavailable Sat morning and the other was going to a wedding. The other who helps out occasionally and with emergencies etc has, apparently, had a major operation and is unavailable long term. I saw the carers Thursday afternoon and none of this was mentioned to me which I am a little annoyed about as I could have sorted something then. I’m more annoyed that they then suggested to dad that the carer who doesn’t drive would arrive on the bus and a woman, who apparently is a friend of one of them but none of us have ever met, would step in and help.

Dad says this woman arrived on Saturday morning. Apparently, she did not know the other carer at all and they had never met before. She stepped in the house, walked straight down the hallway, where my dad has a display of house plants, promptly told him his plants were dehydrated, walked into the kitchen to get water and started watering his plants, she then took a cutting for herself without asking. This was all happening whilst my dad stood open mouthed and the other poor carer (mum’s normal carer) was getting mum out of bed. Dad said to this woman ‘Erm, sorry but you aren’t here to water my plants, you are here to help care for my wife!’, not sure how the conversation went after that (will speak to dad soon) but neither my sister nor I are impressed with this at all. I have no idea who this woman is, what her caring experience is or even if she is insured or dbs checked. They have done this once before by sending in the husband of one of the carers when they were short staffed, luckily I was there and met him, he was a lovely guy and works in a local care home so it was all above board so to speak but who this lady was, I have no idea?

This isn’t right, is it? I feel as though I’m being mean because the carers are a bunch of lovely people and they always step in when we’ve had issues with the two separate morning carers (ie helping out when they go on holiday or weekends away as one is on holiday a lot).

I genuinely feel as though I’m going crazy with all of this. I just want my life back, I have enough of my own issues without stuff like this to deal with.

I know they were just trying to help and not let dad down but I’m now going to have to tell them not to pull stunts like this and to communicate with us in advanced. I absolutely hate confrontation.

My sister and I were saying we will push for this again when we have this family meeting this week.

I think you can use this situation as a catalyst to get rid of these ad hoc carers and either to bring in regular agency carers who can be directed to also provide stimulation to your DM (or take her out if that's at all feasible now) or to go for a care home option. Your DF should be sufficiently alarmed at how unprofessionally the carers are behaving to agree to something more stable. Good luck.

That’s the worry, I went to see dad today and he doesn’t seem concerned, he thinks they were in a desperate situation and it probably won’t happen again but how can we be sure, this is the second time the have roped in a stranger to care for mum, at least the last one was one of the regular carers husband but we have no idea who this last person even is. Apparently none of the carers did, she was a friend of one of the carers mum but even he didn’t know her. Ffs!

I will ring a couple of local care agencies tomorrow.

If there is one thing I know from observing other family members with sick spouses - my wider family and also DM and DF - is that they have no idea of how bass things are because they are so immersed in it. They are sort of blind to it. Like being nose blind but to a situation not a smell. And because resources are so streatched the NHS/other agencies do nothing because unless the crisis hits it’s better than the alternative. My perspective any way

SIL lived next door to MIL. She made a different choice and is reaping the benefits. It can be done. I’d rather live with guilt than resentment.

I don't want to live with either.

Understandably. Then make different choices.

It’s really easier said than done.

Cognitive decline, pain, dementia, putting on a good show. This was my parents. They could pull it right out of the bag when it suited.

I can honestly say I spent the best part of 20 precious years "worrying".
Please don't make that mistake.

Could you possibly arrange for your mother to go to a good care home of your choice for respite ? Present this as a case of your father needing a break and not as her leaving for good . We did this with an uncle and his wife was so happy when she saw him actually enjoying the social part and even his appetite improved . So much so that she started to make enquiries about a possiblity of her joining him if she needed to .
Just wondering if there is such a thing as double rooms in Care homes ? Think the thought of being separated scares a lot of older people . Plus their image of homes can be so negative, comparing to the old fashioned places like workhouses .

I think I remember some of your previous posts. I think that this was before your mum had a dementia diagnosis but she needed care for other reasons and your dad refused to use any of their savings to pay for help despite the fact that the bulk of their savings came from your mum's inheritances. He treated her money as his own.

He sounds life a very selfish and self-centred man.

You sound like such a loving and caring daughter for both your parents. What does jumpsout at me though is that the decisions that your dad is making with regards to your mum's care and wellbeing are all based on not spending their savings, the majority of which came from your mum's inheritances. Your dad constantly puts his needs before those of your mum.

He may not necessarily be a bad person but he is a very selfish one and while the carers are the cheapest option, they are not necessarily the best option for your mum. This option is also the most stressful option for you as you need to do so much hands-on care to plug any gaps in your mum's care.

Thanks everyone. I’m getting a little bit nearer to dad agreeing to something. I am due a hysterectomy soon, had my pre-op the other day. Dad knows that I will need a few weeks rest after so is ‘considering’ agreeing to some full day home care rather than the current situation. My sister works full time so will be unable to go and see them in the day whilst I recover, so he will need something, even if it’s just a few weeks respite day care.

I’m hoping this will give him a taster of the kind of care he could be getting for mum and the freedom it would allow him.

Here’s to hoping.

It may do your Dad good to see what happens when you're less involved, and don't go rushing back to enable him. Take your full 6 weeks to recover. Often it comes to reaching a crisis before change can happen.

I think this may be the point we have arrived at where we have no choice but to change things.

I absolutely need everything in place before my surgery though as I can’t have him ringing me panicking all the time as he usually does. This morning it was due to the fact the carers have run out of mum’s ibuprofen gel (they all have form for letting things run out before letting us know!) and he was stressing that I absolutely needed to go get some this afternoon, so there I am rushing about after work only to find them both fast asleep in the living room and dad getting angry with me when I woke them up upon arrival. I can’t win some days.

I know this is easy to say and very,very hard to enact but the only thing you have control over is your own response.

Right now your DPs are paying for £1000 of care per week. Granted it sounds like the care is far from perfect but in the scenario where your DF didn’t phone you then surely they would have found a solution i.e. one of them going to the chemist in their paid time and getting the ibuprofen. Obviously that’s a lot more work on their side than simply phoning you, but it does exist.

I would make your DF, your Dsis and the carers aware that for the first 2-3 weeks ( or however long is advised) after your hysterectomy you will not be answering your phone as you have to prioritise your own recovery and cannot drive or do anything anyway. I would tell them now, and repeat the message closer to the time.If your DF decides to get new carers in the intervening period, tell them too.

I would mute calls from their numbers or indeed block the numbers, except perhaps your Dsis for genuine emergencies. Your DM will get good enough care without you there, or your DF will put her in respite care. He is more likely to do the latter if he realises that you absolutely won’t- because you can’t - step in.

Managing medication supplies isn’t necessarily something that carers would typically do - so when you review things it’s worth getting quite specific about who manages stock monitoring and ordering of what. It might be a once a week type task on a care arrangement agreement.

I do appreciate that but it would be nice for them to give us a heads up when they are squeezing the last remains from a tube or scraping out the last bits from a tub of something. They do this all the time so I’ve had to tripled the supplies of everything in the house (toothpaste, deodorant, shower gel etc).

When I was a PA for disabled people I would always gently remind my clinets when they were running out of products and food etc. It’s only a small thing but really helps when people are struggling with so many other aspects of their lives.

Again this is why we (sister and I) want to go with an agency now and issues such as this will be at the top of our list of questions to ask when we have assessments with the care companies.

I’m hoping we can persuade dad to agree to full day care at home with a care agency for at least 2-3 weeks when I’m at home recovering. That’s the plan we are trying to put in place asap.

Ah see this I would see as it's on you as the family to organise repeat prescriptions. They would expect the next new tube of gel to be available.

Is your Dad able to get out to the chemist? Or if not then you need to arrange regular deliveries from the local chemist so that her medication is always available.

I have worked for a care agency and we have nightmares with some relatives not ordering medication on time despite saying they will.
It can be meds that aren't meant to be stopped abruptly and despite letting them know when things are running low, they just don't prioritise it and then there's a gap in the dosing for which we have to seek medical advice.

No, it’s not part of mums repeat prescriptions, she is on a lot of meds and I organise all of those to be delivered to the house every month and I ensure these are never low, however the GP won’t prescribe items such as ibuprofen or aqua max as they are cheap enough to buy off the shelf.

I absolutely take onboard that these items and other personal products such as toothpaste etc are down to us as the family to remember to purchase but I can’t always remember everything. I’m not there every single day and I am not using those products on mum myself (these are products the carers use) so I’m sometimes unaware when these items are getting low. It just slightly annoying that they are aware they are getting to the bottom of a jar or tube of something but they can’t just give one of us a heads up or jot it down on the communication notepad. Dad can’t get out himself unless my sister or I sit with mum, so I organise everything else or he’ll purchase items when he goes shopping every week but he’s 85 and can’t remember everything.

As I say, when I am working I am a PA for disabled people and I always made a note to let parents or carers know when the client was low on the items they use frequently, whatever that was. Our carers charge £26 per hour and imo do the bare minimum, surely a shout out when something is running out is not too much to ask?

Regardless or our current situation, when we do change over to an agency this will definitely be something that I will be asking the new carers to keep a frequent check over especially once I’ve had my op as I will be unable to visit as frequently as I do right now.

@LeaveMeBeewhat happens in that scenario if there is no family?