Apologies for this huge post. It's mostly just a rant. Feels good to get it all noted down.
Mom is coming up to the anniversary of her G4 glioblastoma (malignant brain tumour) diagnosis and, according to her oncologist, should only have a few more months to live as the average expectancy following diagnosis is roughly 18 months or so.
She hasn't yet gone downhill. The only issue she's having right now isn't the tumour itself, but the swelling. She refuses to take steroids except for when she develops a headache, which is rare. I'm not sure why she's so afraid to try them properly.
We think the swelling was caused by her taking temozolomide, which hasn't worked at all. In fact her oncologist thinks it may have increased the growth of the tumour. Now she's taking some respite from chemotherapy, but feels as though the hospital and her oncologist have abandoned her as she'd been reporting eye problems for months which had gradually worsened but now seem to have settled. At present she can't see very well but keeps trying to convince me to let her put the car in the garage or for my Gran to take her a few miles further on their walks when neither of them are in any condition to do so. She's taken the car out and crashed it once already.
She should've been contacted by the oncologist by now for a scan, but nothing. I figured it would have been curteous for her oncologist to at least attempt to look into the cause of her eye troubles, but again, nothing. We've also had a bit of a lame time with Macmillan who have been less than useful in handling our finances when we haven't got a single clue what we're supposed to be doing. According to someone from another local charity, Mom should be receiving more money than what she currently does, and Gran should probably be receiving some sort of payment as her carer.
Mom was always massively sporty and lost a lot of weight from regular distance running. Now, she's put all of the weight back on and feels awful in herself, and since she can't really go out by alone anymore without putting herself and others in danger, she'd like to go back to the gym. I'm not even sure if she's allowed to. If I could take her more often, I would, but last time she fell from a crosstrainer; my family has said that even at present they want me to complete my final year of university, but that means spending less time caring for Mom when my Gran seems to be faltering herself. I also have depression and occasional spikes of anxiety, and on Mom's off days I tend to hide myself away under the duvet sleep to avoid everything that's going on. Meanwhile my Gran shops, cleans and clothes us and I barely lift a finger because Mom's upset upsets me and I don't know how to cope with it. And my Granddad? He watches TV all day. I suppose he's earned it, really. I have yet to.
Whilst I understand that what she's going through is frustrating as goodness only knows what, I can't wrap my head around why she can't put her pride to one side and allow herself to be looked after. It makes things all the more difficult. No matter how many times we try to explain to her that she has to consider those around her as well as herself, she ignores us. She's been very stressy towards my Gran and they've returned home with Mom in a gigantic strop whilst Gran's eyes are full of tears. If I'm not at uni, I'm most likely asleep. The only time I work effectively is when there is nobody in the house, yet I feel obliged to stay in case I'm needed.
But then, am I needed at all if I do nothing for her to begin with? Is my Mom's anger justified? Can she take it out on something else? Should I have taken longer off of uni and come back next year instead of this?
Although I'm thoroughly medicated at the moment, coping with all of this is becoming a challenge. I'm not trying to point fingers and place blame, but if possible I'd like to find a good work-life balance whereby Mom isn't persistently frustrated, Gran isn't always upset and I'm doing a decent amount of work whilst helping care for her if and when she needs me. I'm starting to lose myself again; gradually, sure, but I can feel it. I need to get my backside into gear (which is easier said than done with an MH condition), Mom needs find a little more compassion, and Gran just... needs to keep doing what she's doing. But how?
