A difficult week

FormerMember over 5 years ago

1 reply
37 subscribers
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Hi im finding this week particularly difficult. I am the carer to my partner who has glioblastoma and a mother also and working from home at present although this is only during covid 19. My partner has finished radiotherapy 3 weeks ago and since Tuesday has been having multiple focul seizures, having difficulty walking and in pain. Spoken to hospital team and solution is always increase seizure meds and now on 3 different pain meds plus increase of steriods. Had mri today and had 3 seizures during mri but no one seems that concerned. I'm finding it really difficult to manage as I can see a big change in my partners understanding and communication is very difficult. I'm finding it very hard at the moment as quite isolated with covid 19 and being a carer. I find my children a god send though sitting down and doing school work with them is a saving grace at the moment they are truly wonderful but I'm just feeling a little lost.

Sarah2nd over 5 years ago

Wheatgilp19781983

Im not surprised you’re feeling lost, you’re overloaded. But I know you know that already, & right now it’s literally about getting through each day. Wish I could give you a big hug.
I’ve been in your shoes, watching things get worse with my husband’s seizures, trying to protect the kids from seeing too much (impossible) whilst he became more dependent on me. The unpredictably of the seizures , the varying severity of them & the deteriorating confusion is hard to take. I know I just ‘parked’ my feelings to get through it, knowing I’d have to deal with it later.
I hope you’ve been able to get hold of school if your kids aren’t normally homeschooled & have filled then in on what’s happening- it will help your children immensely if teachers know what’s been going on. If nothing else, it will take some pressure off you to try & keep up with what’s being set. Same with work- it can be a mixed blessing I know, sometimes it’s helpful to have the distraction & just be able to think about something else for a while.You should feel proud of yourself for doing your best in a really difficult situation, my heart truly goes out to you.
Hope today is a little easier, I’m sending you strength & courage, you are doing an amazing job for all your family. if you can, even if it’s for 10 minutes, try & take some time for yourself today, especially if you have sunshine. It’s not wrong to want a break

Big hugs to you

Sarah xx

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A difficult week