For a long time I've thought that one thing that would really help me get through this experience would be some understanding by loved ones that this is a terrible, terrible journey. Every member of both of our families acts like it's nothing. Some days I want to scream at them, or drive to their house and punch them in the nose. (At one in-person support group this experience was so universal that we talked about drawing names of other people's family members and writing them a letter telling them off. Never happened, but it made us all feel better to imagine it.)

I'm tired of trying to convince myself that they don't mean to be mean, or that they just don't understand, or that surely if they would have thought over some of their remarks they wouldn't have made them. But I'm tired of making excuses and trying to understand. I wonder where the understanding is that should be coming in our direction. We are the ones who are watching the death of our spouses in slow motion, and we're the ones who are always supposed to be understanding? Who made that rule?

When DH's family distanced themselves after his diagnosis, I started to think that I didn't even want to tell them when he was gone. I felt guilty about that. After years and years of silence, though, I no longer feel guilty. If they get angry and say that as family they were entitled to know, I would ask them exactly when they acted like family. DH has said several times that evidently to them he's already dead. We no longer even get Christmas cards from them.

My sister told me about sitting down with an acquaintance and crying with her over something that had happened in the acquaintance's life. I'm still waiting for my sister to sit down and cry with me. But at least this sister is still talking to me. My other sister has let it be known that she doesn't want to hear anything about what is happening to us. And after some of the comments she has made, I'm just as happy not to hear from her. But it's hard when you've stood by them through all of their life's issues, and when you're dealing with something like this and your heart is breaking, all you see of them is their back turned toward you.

Throughout the long years of caregiving, I've probably written thousands of pages trying to get some of my words and emotions out so my head wouldn't explode. In all those words, I think the truest thing I ever came up with was this: If you don't talk to people about what is really happening, they think nothing is wrong. And if you do try to talk to them about it, they run away as fast as they can. What I'd like to ask all of these people is WHY? Why is it that other people touch their hearts, and we don't? Why do they think we don't need support or an attentive ear sometimes?

You wrote: "If you don't talk to people about what is really happening, they think nothing is wrong. And if you do try to talk to them about it, they run away as fast as they can. What I'd like to ask all of these people is WHY? Why is it that other people touch their hearts, and we don't? Why do they think we don't need support or an attentive ear sometimes?"

I think it is because they don't want to disrupt their lives to help you.They do see the enormous task you face, and they don't want the burden. To sit down with an acquaintance who is crying is a half-an-hour job that would happen only once in a while. To help you looms as possibly years, and they don't want the commitment. As Wolf would say, "the little darlings."

Wow, this could of been me a few years back. Family for the most part ran for the hills. I understand about not telling family when they passed. My two DDs who stood by us agreed with me about the visitation and viewing. There would be none. If someone had wanted to see DH they had almost four years to do it. We just had a service at our church after he was cremated. Shocked a lot of people. But the two DDs and I knew we would punch someone had we done the visitation.

I know this won't help, but it is not just us. I know a woman who had a major stroke. She is struggling to get some life back. Her mom had to move in to take care of her. She lost her job, hobbies and friends. They ran for the hills to. So sad. I have stayed with her a few times, so her mom could take a break. I understand how hard it can be.

I am different now to. I won't say I have cut people out of my life. But if you are an ass, you don't get my time and help with anything. This includes family, they no longer get a free pass for just being family.

Jan K

I once was a volunteer visitor at a nearby state prison where we tried to help rehabilitate
prisoners. I met a prisoner's mother who was in a situation far different than yours but
she told a story that was much the same as yours.

She was totally devoted to her son throughout his life and the difficult situations she
faced while caring for him made her life miserable. She could never understand why
family members seemed not to care and never offered to help. Never visiting him in
prison and didn't want to talk about him or hear about him.

After years of this painful suffering she met another prisoners mother who was on the
same lonely journey as she. They became well acquainted and would share their very
similar experiences. They then found other mothers at this same prison and formed a
little group and met at the prison or elsewhere to talk about what none of their family
members ever wanted to talk about....... What a blessing for each of them.

EDITED ... I'm adding this the next day, after giving it some powerful thought.

I'm really trying to understand why others who are not directly faced with the problems
we face as caregivers of loved ones with dementia seldom understand.
On Joan's title page are some words which caught my attention when I first came here.
"Our issues are unique" So I looked up the definition of "unique". The definition was
........Being the only one.......or, Without equal.

Now I totally agree that our issues are unique, But now I realize that they are only unique
to us. The mother who's son was in prison felt the same so she sought out others who had
the same issues as she. Exactly as we are doing here.

Now I think I've finally learned to understand understanding.