I want to post in support of StuntNun. I've been somewhere close to where she is now, and perhaps I can offer some insights.
I thought long and hard about whether to post at all, because the very last thing I want to do is to make posters like Waiting feel bad. Let me be clear - it is absolutely the right thing to do what you need to do to get through. But I want to explain how it feels from the other side. I also think that there are enough differences between my situation and, say, Waiting's or StuntNun's that we can appreciate the parallels without triggering anyone.
My mum has Multiple Sclerosis. She was diagnosed 24 years ago, so I have known that she suffers from a chronic, degenerative, life limiting condition for my whole adulthood.
Since her diagnosis, she has not told me one single thing about her condition. Not one - not prognosis, not treatment options, nothing. She says she doesn't want to worry me, or talk about it at all in fact. I think there are probably other reasons too - denial, pride - but as she doesn't talk about it, I don't know.
I respect her decision. I never push her for information; I respect her privacy. As her condition has worsens, I become aware of changes when she can no longer hide them - moving into a wheelchair, for example, or getting a stair lift installed. I don't mention the changes when they come.
But because she chooses not to talk, I can't give her support. I can't get support for me because I don't have anything specific to be supported.
I noticed that she'd lost weight when we last Skyped. I've known for a while that her throat muscles aren't working well. Swallowing is hard. Has she lost weight because she's dieting? Or is it something else? Now I remember that last time I visited she requested soup for lunch. Is there anything I interpret about that? Is she getting towards the stage where tube feeding is going to be needed? And, if she is, what does she need?
Or I get a voicemail on my phone from my step dad. Mum's in hospital, please call him. I've been thinking for a while that her voice sounds breathy on the phone; is the MS affecting her breathing now? Is she on a ventilator? No, this time it's "just" that she's given herself 2nd degree burns doing the ironing. It turns out that she has no sensation of heat or cold left and so ironing is now dangerous for her. I'm relieved, but I'm also feeling guilty because she was ironing the silk pyjamas I gave her at the time; I wouldn't have chosen a gift that required ironing if I'd known I was putting her at risk.
Can you see how, by being in the dark, I spend so much of my time worrying about her? Perhaps unnecessarily. Hopefully unnecessarily. The point is I don't know.
Saying that my feels are those of disappointment is completely missing the point. I mourn for what might have been and I yearn to help her. I doesn't come close to explaining the awful, churning feeling everytime I see her number come up on my phone in case this time it will be The Call. Or the constant, nagging feeling that I'm failing her, that there's so much more I could do to help if I only knew what to do. I wish I could put aside the permanent anxiety I feel that someone I love beyond measure might be suffering and won't permit me to help.
And it's not because I'm making it about me. If I were doing that then I'd do sponsored events in aid of MS Society and tap all my friends and colleagues for a quid. I'd tell them, with shining eyes, how awful it is for my DSs to grow up with Granny in a wheelchair. (It's not, BTW. They love her just as she is. She's just Granny. Her legs don't work, and her hands sometimes look like claws and she dribbles. But she also takes them for rides around the garden in her wheelchair, and lets them poke each other in the bottom with her sticks, and organises competitions for who can pick up the most Lego pieces with her Special Grabber, and cuts them out shiny Chinese dragons with her Special Scissors. I'm very comforted that she had enough time post diagnoses to meet and know her grandsons.)
So I'm not saying that StuntNun should push her DB and SIL. I'm not saying that they're wrong or should change one single thing that they're doing. But please do bear in mind that if StuntNun feels like I do then she's suffering too.
Silence, ignorance can cut like a knife.