How do you respond to family inquiries?

Timmyd

My DW is was diagnosed with EO several years back. She is 60yo and deep into stage 5. She has a very supportive and loving family (parent and siblings) that are several states away. They are good people and I am fortunate to have such pleasant in laws. They reach out to us periodically to ask "how are things going?" In the first couple years after diagnosis we were doing ok, but these days things are often going poorly. I am not going to try and deceive them but I don't want to tell them the truth and extending the suffering / misery. Often I end up just avoiding them when they try to reach out. How do other people deal with this type of situation?

annie51

I feel like it’s best that I don’t sugar coat the situation because it’s their family member too, but I don’t go into much detail unless they ask (which they usually don’t). I usually answer something like…things are getting more challenging but we’re adapting. I have had to tell several people about his constant shadowing to help explain how difficult phone conversations are so they’re aware in case I don’t answer a call or have to respond by text.

SDianeL

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.

Goodlife2025

My DW also stage 5, has always enjoyed a life full of family and friends. It has been exhausting trying to have the same conversation with so many about how she/we are doing. I started a weekly group test with updates. I set some ground rules regarding not responding back with any negative comments or opinions about her care. It wasn't a forum for discussions, those can be had one-on-one. I also set rules that everyone can take the information and process how works best for them. There is no wrong way to grieve and each of them is losing their relationship with her as well. (And there have been all reactions from the panic, I am flying out to help you next week to the silent crickets where I am not sure they are actually getting the texts). I started with only a small circle of family and close friends but the circle has grown with requests to be included from others. As long as everyone uses the format in a way that is supportive to us they can stay on the group string. It has allowed extended family to support each other in a way I never could. It has also been a blessing allowing a freedom in our family in that it isn't a secret and my DW feels the love everyone is sending her. I probably go into more detail about her status than most people would but I am not one to sugar coat things. I also think it has helped me not to feel so isolated and able to ask for her sister or daughter to take her for a few hours when I feel myself needing a break. So far, it has been a blessing for us to share the journey. I certainly understand each family dynamic is different and you will need to decide what is the approach to family and friends that serves you and your DW the best. Unfortunately, only one of thousands of decisions you now get to make. Care.

CindyBum

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.

sandwichone123

My dh's family is vaguely supportive—that is, they don't undermine me but the most support I have ever gotten was a phone call. He was stage 5 on diagnosis, and I told them (parents and brother) the diagnosis (in part because he was designated executor for his parents). Mostly I don't provide info, but he still had a phone when he moved into memory care and they called to ask about that—meanwhile the parents had moved into assisted living so they saw it as perfectly normal. I try to call his mother once a month so she can hear his functioning firsthand, and also because she is so lonely. His kids haven't made any contact in years.

H1235

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.

Timmyd

https://alzconnected.org/discussion/comment/237472#Comment_237472

How we (or myself) are doing depends upon when you ask. I think I end up avoiding conversations during the bad periods and talking to family during the moments when I am feeling less awful about the situation. I do not want my DW's family to ever doubt my commitment to her health and safety and I am concerned that if I were to tell them what I am feeling during the low moments they might really begin to wonder about our situation.

I have thought about just writing a dispassionate summary of what her current day to day capabilities and behavior so that they are aware of where we are in the path of decline, but I have not taken that step.

I think that if they care about her, they would take the time to educate themselves about the disease and the inevitability of progression. Once you are aware of that and you are 5 states away, are you really interested in the day to day details of disease progression?

BPS

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.

Donr

I keep all of our family up to date.