I tried to always understand that everyone handles things differently, and that Chris kids had only gone through losing their mother cancer 8 years earlier. They were 11, 13 and 18 then, so pretty tough on them.
With Chris they were often very strange - in the early days they would make fun of his speech problems, they would laugh at many of his deteriorations. He would laugh along with them, but I would be horrified inside wondering how anyone could do that to anyone, let alone their father.
They mostly only ever spoke to me of how awful it was because ... [fill in here all the coming life milestones dad would not be there for - for THEM]. Now I understand that, sh it he wasn't even here for our 3rd wedding anniversary! But I would think, yes that is valid, but shouldn't you concentrate on what he is going through, grieve that other stuff after he is gone, he NEEDS you now!
I only really got the 2 of them that live fairly close here by requesting they come towards the end, chasing them up - what are you doing this weekend? In the early days they all stayed away like he had the plague. I was very concerned that they would have deep regrets once he was gone if they did this. I'm very glad now that I ended up making them have some involvement.
I remember when I broke my toe earlier this year and his daughter came over 'to help'. She arrived, said hi, laid herself on his hospital bed and went to sleep. I thought, hang on, shouldn't I be the one resting with my feet elevated? oh well ...
The one that lives only 1.5 hours away would organise to come, and then FOUR times she didn't at the last minute. THREE of those times I had cancelled home services because she was coming 'to help'. One of those times she never even bothered to let me know she wasn't coming. She would brag to me, right to the end that she was the only one dad would trust to do anything for her ...
Like others report, if they did come it was just another person for me to wait on - would you like a cup of tea, have you had lunch?
Frequently his kids said to me - I'm SO GLAD dad has you to look after him ... yeah and I bet they were!
My kids gave more practical help along the journey, and none of them live close to us! They didn't come often, but when they did it was a whirlwind of them doing stuff outside, fixing little things in the house and just sitting and talking to Chris for hours on end.
I also remember early after diagnosis Chris saying to health professionals with me sitting beside side him, many times - I'm doing OK, the only thing that really upsets me and worries me is how this is all going to be for my children. I would feel like some statue just sitting there thinking, don't worry how it will be for me I'll be fine eh ...