How do you respond to family inquiries?

I gave family members a copy of the book “The 36 Hour Day” which explains the disease and caregiving challenges. I was honest when they asked. I kept a list of my DH behaviors and would give them the 3 newest ones. I would also tell them how we were coping, keeping conversations brief but honest. If they care and are calling I would give them answers.

I could not handle the energy of a group text situation like Goodlife, because my DWs family is just too big — immediate family alone is 25 people. So, I do emails updates for them every couple of months. It is helpful for all of us.

There are many things to consider. Do you find it helpful to talk about what is happening or is it hard for you? Sometimes people ask how things are going but don’t really want to hear it. I think anne51’s suggestion to tell them in vague terms that things are getting more challenging is a good start. If they want more details maybe they will ask. If they quickly change the subject then you will know they don’t really want to hear the truth and can be less honest next time. As a mom I would want to know what is happening with my adult child and I do kind of feel like they have a right to know.

Very few people ask and when they do most are just doing the socially normal how are you, they are not really wanting any detail. I don't hear much from anyone except one of our sons that I talk to regularly. When some one does ask it is hard for me to answer because on the rare occasion that someone does visit she is able to showtime to some extent. That makes me think that they believe I am over stating things, plus each day is different sometimes it seems like she is getting worse quickly then she does better for a while, so now I usually just say she is doing as good as can be expected for someone with worsening Alzheimers that has had 2 strokes. No one has never asked for more detail, if I thought they truly want to know I would go into more detail. I think most people ask to be polite or think that is what they should do. If I had people that truly wanted to know I would send out a group text. I did that a few times after her stroke because it was easier and less time consuming then letting people know individually.

Just curious as I have to share about transition from palliative to hospice . . . what did you set as "ground rules" . . I am going to have some boundaries with some . . .don't want to state them before needed but have in the past had to limit my contact . . . trying to be a bit proactive/prepared. . . don't want any immediate "panic" and will need to limit my communication with all going on

I started a daily journal on my DW and her progression. Each month I copy and send select family and friends my journal notes. They all appreciate knowing where both of us on our journey. Plus it’s always good to go back and review my journal entries and see how much she has progressed day after day I don’t always realize how she has progressed.

I totally agree with you. When I started sending my journal notes, the list of people I sent this to was a lot bigger than it is now. I only send my notes to family and friends that ask how we are doing. It’s quite a bit smaller now.

The resentment, I found, took to much of my already depleted emotional resources and by 'letting it go', has helped me carry on. Also, it is very sad that, I believe, they will look back and wish they had made a different choice, or not. All of us here know, first hand, how crazy life can be.