Has anyone else struggled to access drop-in care for people with PD because of the time-specific need of the medication?
We’ve tinkered as much as we can (and with help from the PD nurse) with all of his meds and we can’t get the slots down to less than 5 per day. Social care will only offer 4 visits (we’re self funding anyway) so we have to pay for an hour at lunchtime when he only needs 30 minutes, just to cover 2 slots of meds. However, they can’t find an agency to do this even for just the weekends, which is when we need it most (we’ll be doing the week days). I thought if I went through the social care system, they would be able to find something that I couldn’t.
Every solution we try for him to do his own meds (as he did previously) doesn’t work. He’s totally blind (recent, sudden & total) and when added to the tremor & peripheral neuropathy, even if he could find the meds we’d put out in a pot that he can just knock back, he may never know if he’s taken all of them or dropped any! The PD nurse said we could use patches eventually but that’s very much a last resort and only used for people who can’t even swallow water. We’ll be paying something like £25 for someone to drop in, hand him the pills, and be on their way again, when it’s not the meal time / personal care slot. But if any of the slots don’t happen at the right time, he’ll be more liable to falls and we’ll end up having to pay someone to be there all day instead.
Hi,
I know there are delayed action capsules of Madopar, I take one at night to keep me ‘topped’ up for the morning. Maybe a route to consider? Assuming that sort of delayed action is available with the medication in question, or it’s even a suitable course of action during the daytime.
I used to help a family out who’s elderly mum needed help with taking medication. I would go in just to hand the medication over for her to take. I would make her a cuppa and have a chat. I was actually the cleaner for the mum and then was asked if I wanted to take on the role with popping in to hand over the medication just to make sure mum was taking it.
I mention this has wondering if you have anyone who would be willing to take on the role. Obviously it would need to be someone you can rely on and trust. I know I wasn’t medically trained but I was sensible enough.
Thank you both. We’re at an absolute loss to be honest.
He currently has co-carelodopa and they won’t contemplate changing this at all at the moment.
I think if it was once a day, or perhaps not the weekend, we might be able to ask someone but getting a regular reliable drop in for any of the slots seems impossible. I have a cousin who lives near my dad (I’m 40 mins away) but even if he did one slot without food prep / personal care, it would be mid afternoon and I don’t think I could ask someone to do that every weekend. I went through the SW because I thought that there would be a back up - I live in fear of getting a call to say “sorry, so and so is off sick and can’t do it today”. He’ll also have to have a District nurse visit twice daily at the weekends because of his insulin but they are sporadic with their timings so I can’t even ask them to do it. One of his other meds is also a controlled drug which further complicates the issue! He’s always liked to challenge…
Just wondering if you’ve had an OT assessment, this could prove very useful. Have you thought about contacting RNIB I know they have a variety of things/gadgets that could help, they might even have local volunteers who would visit. Age Concern is another good charity who use volunteers. Also can you talk to your father’s GP about his mental state and ask for a cognitive assessment. In other words try to gain as much information as you can before making any radical decisions. Given your fathers age and medical history,things can change very quickly. In the meantime you could discuss with your father how he feels about going into a care home. It may be something for him to think about while you could do your own investigations about what is available locally. Be warned though places in good care homes are a bit like hen’s teeth and we are the midst of a crisis in social care.
This sort of situation can seem overwhelming, especially given the state of social care at the moment. If you can, focus only on the next thing you have to do to gain the necessary information, the rest as yet is an unknown.
I hope some of these suggestions will have helped, it is always good to have a plan of some sort.
Thank you for your thoughts. We’re in regular contact with the Sensory Loss team and they’ve been great. They’re coming out again tomorrow with their OT but they’ve already dismissed all of the potential gadgets - some work by sound but he can’t hear well enough, his neuropathy means he can’t tell if he’s got the pills in his hand or how many etc. While he was in hospital we did a big clean & sort and I found SO MANY drugs strewn about! And that was before he was blind!
In the past few years we’ve had various discussions about help, care, moving somewhere more suitable etc but he is extremely stubborn and wouldn’t even entertain a discussion. He came VERY close to losing his leg with his diabetes & he promised to change but as soon as he was home he went back to his old ways. Now he has realised it’s too late for many of those options and he can’t move so he could be looking at a care home next. Now it depends what mood he is in as to whether he wants to stay at home, care home, move house or shoot himself. We’ve had the EMI out and they’ve prescribed Sertraline and I’m fighting to get his hearing aids sorted out so I can prove that he has cognitive issues, not just hearing issues. It’s mild right now but enough to alert me that things are on the decline. When things are really bad & I’m stressed about the lack of help, the reluctance of the SW to get things moving etc, I think a care home would be the best place but I have serious control issues and he’s far too stubborn and independent yet. There’s certainly no perfect answers!
Hello Henrys- cat
Thank you for your reply. I understand how frustrated you must feel about the lack of support. We started off by having drop in visits but they were so expensive and didn’t really solve the issues i was dealing with, it was only when we reapplied for chc funding that we got the 24/7 care we needed. The struggle to get this level of care was horrendous. Basically you have to prove the care is complex and unpredicatable. Many health care professionals are not fully conversant with the intricacies of this level of support but you could contact Beacon, a charity dedicated to helping you through this website or alternatively ring the helpline. Your father is especially vulnerable and social services need reminding they have a duty of care towards your father.
Your father must be really frightened and is desperately trying to hold on to some sort of control over his life. He must feel as if everything is slipping away from him. It may totally illogical for him to try to hang on to his current lifestyle but it is all he has.
When you are in such a blind alley and you feel there is nothing more you can do all you can do is wait. Eventually one way or another the situation will resolve and you will know you did all you could in very difficult circumstances.
Here’s hoping the sertraline kicks in soon and he becomes more amenable. xxxxx
Thanks!