the administrative load of elderly /dementia parents

[Aramox]

I'm finding the load of managing care for my parent absolutely overwhelming. She lives 'independently' with dementia and so every single thing has to be organised by me. GP, district nurse, social worker, carers, cleaner , hair, feet, nails - it's becoming unsustainable. Has anyone got experience of coping better? I feel like it needs a concierge or a PA! Would a live-in carer manage all this stuff - she could afford that for a while? I'm also looking at a move to assisted housing but I don't know if they'd give that kind of support? Or would a care home really be the only option to escape all the million different bits of care involved ?

I can totally relate to this. My mum has now been in a care home for 6 months. My dad still lives in the family home. Before she went in there were constant doctor, audiologist, hospital visits, falls, entertaining visitors who came to see them. Then there was / is their house. The electricity inexplicably cutting out, bits of cladding falling off, a toilet constantly flushing, and once to cap it all a rat (live) in the bedroom just before her sisters were coming over to look after her when we took dad to my brother’s wedding. I was making phone calls at work at lunchtime. In the home they now take care of everything. I still have my dad and that’s hard enough but he is not as medically needy as my mother. Luckily for me I work part time now and I use 1 morning to do admin tasks. I would say if you can afford it outsource some things. Carers will shop or take mum to appointments. If you work full time and have a family it’s really hard. You have all my sympathies.

This might be the time to accept that a higher level of care is required.

In our experience of live in carers, they would take DM to appointments but we were still required to make appointments and keep track of what appointments needed to be made. I did online food orders and handled the finances.

It was only when a nursing home was required (because 24hr care was required) that we ( DSis who did most of the daily admin while I did finances ) really noticed how much there had been to do.

We were lucky in that the most local nursing home had space and were really lovely. They covered pretty much everything with visiting GPs, chiropodists, hairdressers, district nurse. They also had really good contacts with everyone involved so knew what to expect, could whistle up help in emergencies etc.

It's a tough decision, a good home really makes such a difference.

A good home. Wish I’d done it earlier. You always think you’re doing the right thing by keeping someone in their own home for as long as possible but for my mum with dementia the structure and care of a home was exactly what she needed, even if it took a year to properly settle.

That’s very revealing. Thank you! Even with Covid? The decision is so hard now. And she has only just been deemed not to have capacity to make safe decisions.

I was happier doing the admin because it gave me the oversight, but I'd definitely outsource accompanying to routine appointments. Again, it's easier to know what's going on if you accompany to hospital appointments - that's the downside of handing over responsibility to a care home.

Carers should be a matter of setting up the system then letting it run. I take it you've got a key safe so you're not having to go over there to let people in?

My mum went into a care home right at the beginning of this pandemic and she had to isolate for 2 weeks, which I think is standard and it’s really hard now because we have only been able to see her outside a sliding door and we have no idea really what the home is like. However she seems settled and happier than she was at home. We really couldn’t have carried on much longer. I found it hard at first not to be in control but it is now such a relief to relinquish the responsibility. I just have dad now which is hard enough.

My mother's health deteriorated badly early this year and my sister and I went to look at care homes. Sis is a nurse and so had some knowledge of residential care. We found a lovely place and wished we had done it a year earlier as she would have loved it. Sadly she died before we could move her.
Even in a home you would have a lot of admin but just not the day to day worries.

Gap in the market here. Don't know how they'd put in appropriate safeguards though. It's harder with covid when you can't pop round as easily. I'm glad I don't live miles away.
Do private care agencies cover this stuff if you could afford it?

Oh I hear you! I spent the best part of today with DM running errands, doing shopping, making various appointments for hair dos, flu jabs and chasing up mEDSwith the pharmacist, numerous little jobs needed doing in the house and just when I escaped, she rang me to tell me the TV wouldn’t come on (this is a regular occurrence caused by her pressing the wrong buttons!).

She has carers four times a day but none of these issues are really part of their jobs but I guess a live in carer would probably take over a lot of this so I would say that’s probably the way forward if she can afford it. We did look into it and it was more affordable than I imagined, cheaper than a lot of the care homes we looked at.

A care home will do all the admin for you. Assisted living won’t. They provide services for which you pay extra, such as a carer to do laundry, housework, assist the resident in things like getting dressed etc. But not the paperwork side. Yes, you might be able to get a live in carer who would do that, but I’ve not heard of someone doing so unless it’s an emergency - eg cancelling an appointment due to illness. No reason why you couldn’t make it part of the job description though and advertise as a pa/companion/carer position.
It takes a real degree of organisation and a certain ruthlessness to do the admin - I’ve just finished 25 years of doing it and being carer to relatives.

Hats off to you @Bargebill19. You get sucked into it- and with everything online it really accumulates. Yes we have a keysafe but mum has no short term memory so all appointments etc need arranging and accompanying, and deliveries tend to get lost. @Fyzz sorry about your mum. Searching for homes seems so overwhelming!

It is overwhelming and draining. But my advice would be to go and find out about one a week (I think they are still taking visits with precautions). Because a moment will come when you have to and rather than having to make a rushed decision you will know what the options are.

Have you got POA?

Does your mum have a cleaner / home help?
My mum found a lovely lady who was happy to run errands as well as clean. To be honest her cleaning left much to be desired but she was kind to mum and very obliging so that more than compensated. As mum's health deteriorated she did extra hours.

Searching for homes.
We made a shortlist.
First by looking for places near enough for her friends to visit.
Then by recommendation. Sadly I am of an age where it feels like all my friends are struggling with the same issues with elderly parents. We were lucky that my sister is a nurse and she rang a district nurse friend who gave her a few places to avoid as well as some she rated highly.
Dont be influenced by swish buildings or websites for that matter.
Ask about staff turnover. That will be an eye opener.
Try a short stay for respite.

Ask about staff turnover. That will be an eye opener. Important for two reasons. 1) high turnover = unhappy staff = poor working conditions =stressed staff with maybe no time or patience to deal well with residents 2) your mum will develop good relations with some staff and poor relations with others. The relief when a staff member she doesn't like leaves isn't compensation for the upset when a favourite member of staff leaves.

@MereDintofPandiculation Ha yes I didn't elaborate but just to give two examples
Home one. Small and in a not very nice area of town. Staff lovely, the one who showed us round said her own mother had lived (and died) there. The manager said they hadn't had anyone leave in two years and some had been there much longer.
Home two. Large purpose built place. When we looked round at 11.amsome residents were sitting in the dining room. It wouldn't have occurred to me but my sister reckoned they had been waiting since breakfast for someone to take them back to their rooms. When we asked about staff turnover the manager was a bit taken aback, clearly an unusual question. No-one has left this month, she said.

As well as turnover, ask about staff-to-resident ratios. We disregarded a couple of homes because of the limited number of staff they had on night shifts.

As well as turnover, ask about staff-to-resident ratios. We disregarded a couple of homes because of the limited number of staff they had on night shifts. What sort of numbers should you be looking for?

Assisted living probably will not take her depending on the stage she is at. Early stage they can cope, but as it deteriorates it needs to be a nursing care home.
I work in dementia services, not on care. The assisted living I currently am based at have several residents who really should not be there any longer as they need extra care.
Having seen some residents move in during the pandemic I feel really sorry for them. They are stuck in unfamiliar surroundings, with new faces and do not get to see family, possibly for months.
What angers me is that some families seem to wash their hands of them as soon as they come through our doors....someone else's problem now, let them deal with them. It is quite shocking.

To be honest staff may not be happy in their workplace, but you will find a lot stay on for personal reasons...Close to home, easy commute, been there a long time, grass is not always greener etc.
They may provide activities, but an important question to ask is how many hours does this person work, lots only work part time so activities are in reality limited.

@MereDintofPandiculation

As well as turnover, ask about staff-to-resident ratios. We disregarded a couple of homes because of the limited number of staff they had on night shifts. What sort of numbers should you be looking for?

I'm not sure offhand, I'll check with my aunt (ex matron) she was the one who brought it up. Our issue was that my dad had advanced dementia and was aggressive. We knew that it would take at least three people to deal with him if he was having an episode. If they had limited staff on nights then how could they safely handle my dad if another resident needed help at the same time. All the flash facilities at the most expensive homes would have been wasted on him anyway, he had no idea where he was.

Mine is still v self aware and would rage at the care home idea. Doesn’t have decision making capacity but a strong sense of her old independence. Yet she can’t do a thing herself- lost the will. We’re burnt out organising carers to manage her. Maybe that’s why some relatives step back at the point of admission.
Staff turnover is a great question, thanks! And yes assisted extra care may be too little. Now I think about it she’s done almost nothing off her own bat since lockdown :(.

This is such a familiar dilemma

The other issue with a move to assisted living is that it will very likely only be temporary, so that a further move will most likely be required at some point.

We were encouraged to suggest to my mother that she try the home for a week or so for a rest. Once she was there for a few days it was clear to us that they were good

(No restrictions on hours when we can visit is another thing to look for in a home )

We dreaded her asking when she was going home again and in fact she only asked once or twice.

Come to think of it, my farther decided of his own accord to try respite care for a fortnight.

Here is a thought If your parent doesn't really have decision making capability and doesn't really do anything for themselves, how would they know the difference between an assisted living facility and a dementia nursing home ?

Tell 'em it's assisted and let them try it.

After a week or two my mother was telling us she was on a cruise. How she accounted for our visits I still have no idea.

And god knows how you find care homes in Covid. I dread getting her through another winter.