Oh I did such a big sigh reading that statement Steph!
It resonated so deeply with me!
You hit the nail on the head. You know, we live with them, our lives are totally reordered around the changes of the disease and living with it. Our PALS is our world and so the world of ALS becomes ours and we live it, breath it, grieve it every single day. We learn to accept it, and if we get help with counselling etc we are still shattered but we have some tools to cope with that shattering.
Then family. They have this set of luxuries they take advantage of.
1. Oh it upsets me so much to see xxx like this... so they stay away, and somehow think they have given a totally valid reason and will be seen as somehow more loving because they can't face it.
2. Oh how awful it will be when xxx is gone - I won't have a <insert relationship here> to do this with, or be there for special events (wedding, graduation whatever). Oh, did I miss it when they said how concerned they were for what xxx is actually going through, surely they don't purely see this disease as them being robbed of something, instead of what horror xxx is facing?????
3. Oh he's probably not too bad, he sure looked good when I saw him x months ago, and maybe he will get better or there will be a cure... By not coming near, they can pretend that this 'illness' (of which they have no effing clue about) will go on for years and years until a cure and then all will be good again. They don't want to face the terminal nature of this, so they stay away in order to keep pretending they are oh so concerned, but that phone will never ring to say he is gone.
I can almost understand these weird, disconnected with the soul, strategies. What I cannot understand is the swooping down after the death and making expectations known.
I had a few totally horrific things with one of Chris's kids in particular. I hope Steve's family are just a bit painful and don't go to any stupid extremes.
You have handled this whole situation for yourself, Julien and Steve with amazing amounts of grace and love. Do what you believe is right, and the timing is what it is, and they are going to have to work it out. They had all the chances in the world to work through this while Steve was here and they chose not to.
OK, off my high horse, damn I was up high too! I hope that wasn't too much, and I realise I still feel a lot of things surrounding all this behaviour and attitude of those who left Chris, 'so glad he had me to look after him', and surfaced again once he was gone.
many hugs friend