I care for my father who has secondary progressive MS, my sister and I divide his care between us, she does the mornings/day time and I do the evenings and provide support over night too. It’s worked well for about five years now since his health declined, but I recently found out I’m pregnant and obviously having a baby to worry about means it’s going to be super difficult to provide my dad the support he needs during the night.
Needless to say, we’ve approached the council about putting in care for him, we’ve gone through the standard rigmarole (had to do the various assessments and what not for my partner’s mother last year…total nightmare!) and the social workers are taking their sweet time about confirming/refusing anything, they have however started to quibble about night time care. They do provide it, as I know three people with MS who get “night-sits” but of course, it’s a fight to get them and maintain them.
They want me to provide an outline of what I have to during any given night, I haven’t had a problem doing that but looking at it down on paper it doesn’t seem like much. And knowing how much information we had to provide and how much of an uphill battle it was to get care for my partner’s mother, I feel like it’s not enough. I’m sure I’m missing a number of issues that have occurred during his really bad nights (which he hasn’t had in a while now, thankfully!) and little things that have just become a way of life now.
I really want to provide a clear picture and make sure the council know just how bad things can be some nights because I worry they won’t provide the correct level of care for him, if m they agree to any at all. From past experience (under another council) I know they will argued the toss on every task that was mentioned for day time support, so I’m feeling like this is going to be a massive.
I’m just wondering if anyone either with MS or caring for someone with MS can give me an idea of their experiences with night time needs?
I feel like I’m missing so much but it’s been a while since my father’s had a really bad night, but I feel like the council need to know every potential issue that could arise to ensure he’s actually going to get the level of support he needs/that I’ve provided for years.
Any help, advice or input would be hugely appreciated. Thanks.