How do you respond to family inquiries?

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.

Very few of our family have ever shown any interest of knowing how my wife is doing, so I send a text to a small group only when there is a major event, that way none of them can complain that they didn't know. At first it bothered me that her siblings showed no interest in her condition but as her condition has got worse and she don't ever think about or remember them I don't care anymore and if one called now I would probably be suspicious as to why they are calling now. When anyone asks how she is doing I say that is hard to answer but that she is doing as good as can be expected. If someone ask me how I am doing it is usually just a general greeting so I say I am doing fine because physically I am fine but I can't explain the mental and emotional part of how are you doing with a short answer.

I keep family posted with random texts. I keep thing short, but I do give them the idea that things are not that great. Then they can follow up with a phone call if they want to hear more.

My general reply to "How are you doing?" has become, "physically I'm fine, but emotionally I'm a disaster area". I've found that answer does leave open the possibility of a truly meaningful and helpful conversation with the person who asks, as well as an opportunity for the person to change topic quickly. I figure I can tell who really cares and hopefully I can have a real discussion. Helpful to me, and helpful to the person who asked.

Wow. What a wonderful thread. Lots of different perspectives and experiences. I have yet to have anyone, and I mean kids, siblings, in laws actually ask: what is this like, what are you experiencing, what is your typical day. They hardly ask how I’m doing. But they’re surprised as hell whenever they see DW after a long absence. I did what a lot of people do by sending the 36 hour day to family members and begging them to read which they didn’t. I even ask them to get on the this website but they don’t. I kept people appraised in the beginning then stopped. Like someone said when someone visits and DW was able to act lucid people just think you’re overstating. But when it comes down to it it all goes back to Bill’s the Calvary isn’t coming. When someone asks me how I’m doing I just say we take it one day at a time. They usually don’t care beyond that.