Timings of drop in care

These are probably silly things to ask but my autism anxiety is pretty full on at the moment…

We think we have a plan for Dad’s care with my brother and I doing the week days in 2 shifts per day, then at the weekends it will be drop in care with the social worker suggesting 4 visits per day. This has to be with an agency that can cope with fairly time specific visits because of dad’s medication requirements. I’m wondering how possible that is in reality? He has 5 lots of medication over the course of the day and there’s absolutely no other way we can administer them or alter the times anymore than we already have but I’m constantly hearing about home carers being so busy that people are left waiting for hours.

The other thing that I’m pondering is that we may have to increase the drop in care to include some week days - I’m assuming if you have to take the person to an appointment at a time when they would normally have a visit, you just phone up to cancel it? Are they okay about that as Dad has quite a few appointments?

Still feel like I’m wading through treacle…

I’ll start with the appointments: as soon as you have the details, let them know. It will help them to adjust their schedule accordingly.

Timings - that’s an issue. Most care agencies struggle, and are allowed a flexible window of up to a few hours usually. EXCEPT where it’s time critical. Even then, arrivals are likely to be anytime within an hour either side. You may be able to get it tighter than that but you need to make sure that everyone knows why it’s time crtitical.

Thanks, I did think it would be hard to get the to arrive at certain times and I do think it will be an issue going forward. What happens if they can’t find someone or they keep arriving outside of the window and he gets affected by it?

That would be part of your discussion with the social worker. Have a list of questions ready!

She’s really not putting my mind at rest! She called me Thursday to remind me that the NHS funded live-in care runs out next Friday and if we want to keep the carer on then we need to pay her ourselves. I said we didn’t need to keep her on as the assistive tech is now in (bar one camera) but we were still waiting to be told how much the weekend drop in care would be. She said she couldn’t tell me until they’d found some and it was proving very difficult. She couldn’t tell me what would happen if we got to next weekend and there was no care in place. She suggested we might have to speak to the Parkinsons team about leeway with his medication but I had already spoken to them about his symptoms progressing a bit. They firmly rejected any change in his medication, advising that it could well cause hallucinations & cognitive issues. Also to stick strictly to his recommended timings because even an hour can cause his symptoms to increase, which then leaves him at increased risk of falls. I’ve since discovered that Parkinsons folks are advised to stay well clear of admission to hospital if it all possible, because medication timings can be so variable and they can end up not being to walk or talk as a result.

I HATE not knowing when things are going to change and if they’re going to expect us to pay for extended care because they can’t cover his medication needs.

Make a formal complaint to the council tomorrow, via the online form.
There should be no change in care arrangements until there has been a formal assessment, and no charges either until there has been a financial assessment, and that relates only to the financial situation of the person being cared for NOT relatives!

The needs assessment has been done and the basic financial question has been asked, which is that he’s self funding. They’ve determined that he only needs 4 slots as long as it is time specific but the problem is that they can’t provide that. I went through their brokerage scheme because I’m struggling so much for time as it is and knew I would find it hard to get an agency that was able to provide what he needed. If he was fully funded and they ended up having to use full time care, they’d face the costs, but what about for self-funders? They said they wouldn’t leave him without care but I know it’s really hard to find care full stop at the moment, let alone for weekends or where timing is so critical. He barely makes the criteria for CHC assessment but I am going to do that form this weekend just so they know I am aware of my rights if nothing else. I’ve asked on a Parkinsons forum to see if other people have come across this issue but it’s very quiet on there.