I’m at home sick. I felt yuckky yesterday but chalked it up to being so exhausted from these horrible days. Getting up at 4 to take my husband to the airport was hard and I went back to bed afterwards, to try and bank some sleep for the long night ahead.
When I woke up, I ached and I still felt tired and disappointed in myself for my exhaustion but I went to the hospital anyway.
He was very restless and constantly trying to get up. I feel so bad when I have to hold him down, as did the nurses around me., while we waited for meds to kick in.
He is not going to get out of bed again. He’s too strong, too heavy, too much in danger of falling. Even with three of us, we can’t lift or carry him. My back hurts constantly from having done so for these last few months. But he doesn’t understand why he can’t get up and he constantly tries to. He kept saying ‘horrible’, ‘atrocious’ and ‘had enough’, as he thrashed beneath our hands and we pumped syringes full of gaga juice into him and waited for them to work.
At one stage I reassured the nurses that he wouldn’t hurt any of us and he immediately chimed in, ‘yes, I will!’. No, my darling brother. You’ve never deliberately hurt somebody in your life and even now, your every resisting movement are slow and gentle enough to be countered. Hurting people isn’t in your nature.
Eventually he fell into a deep sleep around ten and I drifted and dozed around the hours, waking from nightmarish monster dreams to check him, until I was relieved by somebody else. I went straight home and feel too unwell to do anything like call people or go out so I am sweltering/shivering in bed, watching my temp register from 39.2 degrees to 37.6 and feeling utterly crappy.
I am not calling my mother/husband/kids/SIL etc. They’ve all got too much to deal with already and presumably somebody will notice my absence after a while and hopefully I’ll be better by then.
There have been a few discussions lately about my brother and this final stage of illness. Somebody family is at the hospital with him always and we provide pretty much all the care, aided by nursing staff as required. We have a carer bed there and also a night time carer to help out: it is very hard to keep awake all night after these months of exhaustion and strain. Also, we need three people to lift and turn him because he is so big and heavy.
He doesn’t much respond any more but we can stroke him and talk to him and sometimes it feels a very peaceful place to be in.
Something my SIL said to the palliative care nurse co-coordinator yesterday really rankled. We were talking about the horrible loss of identity that comes with brain tumours and how he had changed almost immediately after the first surgery, due to brain trauma. In essence, the person he was ceased to exist. She said that she was thankful that all the family drew together and told him how much he mattered before the surgery and the change.
I think she forgot that I didn’t because I didn’t know. I was away and my mother chose to not tell me. She also didn’t tell my husband but he found out accidentally, via a FB chat with my SIL’s sister’s husband (if you can follow that relationship link!). He then checked in with my mother and she basically bullied him into keeping quiet, against his better instincts.
Of course, I then found out by accident as well but it was too late to talk to him in person. I will always regret that. I’ve told him and told him how much he means to me and how I value our relationship since then but I don’t know he much he comprehends. I need to get over this and stop feeling resentful towards my mother but it is hard.
Night duty again tonight so now bed to try and get some sleep before then.
Is it really only Tuesday?
I feel utterly exhausted.
I am not finding much joy when it comes to renting guinea pigs.
Said popular saying is usually utilized when someone wants to indicate general compassion for the world/ huge empathy display and measurement of personal growth; or all three, no matter how subconscious the feelings are. It is genuinely felt and genuinely accepted by others as a valid life commentary.
The saying: “I wouldn’t wish this on my worst enemy”.
I am in the throes of dealing with something so awful right now; I am aware that lots of people make it through this without being so pathetic.
TIL that I even stuff up grieving. Because I can think of plenty of people I wouldn’t lose a moment’s sleep about if they were going through this. My worst enemy? Not actively campaigning for it but would be quietly enjoying it happening.