I’m asking this as I want to try to ease burden on my husband. I’ve been ill for several years now and it doesn’t look like I’m going to get better.
I don’t need help with toileting, sometimes need help with showering and can no longer manage this daily. I have cognitive decline, but was pretty bright, so hoping that makes some difference in how long the decline takes (no idea if does). I have severe fatigue, am mainly housebound, sometimes bedbound. I can make basic food such as a sandwich or a steak (getting things out of lower cupboards can take a long time as I get severely nauseous- there is a limit to what can be left out on side for me or what can be left in the cupboard at height I can reach without a stepstool). We have three primary aged children. I can use a phone screen in drubs and drabs, but really struggle with laptop now. I can manage a walk on some days. I can go around a shop maybe once a month. I can occasionally manage to take the children to a park. I can have a good idea if I’m going to have some “more ill” days e.g. if I go to a hospital appointment I now know I’m likely to be bedbound the following day or day after. I can sometimes do a school run. I can unload the top shelf of the dishwasher but might not manage to put everything away. I can manage stairs once, sometimes twice most days. I am very prone to catching illnesses now, so that sometimes knocks me out for weeks.
If this sounds similar to you, what would help you most? Husband is doing 90% of childcare, all the admin, I try to do most of hospital admin but this is really time consuming and there are times I cannot manage appointments alone. He is doing nearly all the housework. I can sometimes do things like sort socks into pairs or put a few bits away. We are both drowning. He’s amazing but what sort of things would help most? I know a cleaner would, but we need a tidier too.
I’m going to try to reduce health appointments too, unless they are essential or likely to help (I have tried and over time suspect I will get better at assessing this) so that they provide more benefit than setback.
It is hard to write this. I don’t want this to be our situation, but it is. I worry my illness is going to take years off his life too. I want to help our family. I will come back to this post when I can.