I've written in other posts about the lack of family involvement through all the years of dealing with this disease. Other members of our families have had health issues, and people rallied around to support them. Not so for us. We don't even get Christmas cards from most of them any more, let alone an inquiry about how things are going.
This week DH and I were watching a tv show that showed a big family sharing a meal and talking with each other. After a while, DH turned to me, and with tears in his eyes, said "We really are alone, aren't we?". Right in that moment all the excuses I've made for people not staying involved, not even inquiring about how things are going---out the window. I'm really tired of always trying to give people the benefit of the doubt about what seems like--and actually is--an uncaring attitude. As though dealing with the disease is not bad enough, the idea that the people in the world who should be showing the most support are instead the ones who bring tears to my husband's eyes and hurt to his heart--it makes me feel like a mama bear wanting to protect her cub. I will never again try to tell myself that "they mean well" or "I know they're busy" or "they just don't know what to say". If someone you love--or even just someone you know--is hurting, the goal should not be to make yourself feel comfortable, but to help the one who is hurting.
I am so sorry you husband had that moment for some clarity and the pain that came from it. (((hugs))) for both of you.
Jan - I would be tempted to write a letter to all of them with what your husband just said and how you feel too. I hear you, are with you in the feelings of being abandoned as are so many others here. Of course, how you word it would depend on if you want to 'rejoin' them after your husband dies.
I will never understand what kind of mental and emotional gymnastics people go through to justify their lack of reaching out and expressing concern and compassion and help. My heart is with you, Jan. This is from one of your "virtual family". I know this will never be the same, or even enough. Just know we care. And whatever kind of support we can give, we will give.
Jan, I'm so sorry that your husband was able to understand what is going on. That must have been heart-breaking for you. As lindylou says, we completely understand.