What to tell family members before visit

annie51

My DH and I are flying out to spend Christmas with my siblings. Some of the family member haven't seen him in over a year. He's still functional but can't carry on a conversation, repeatedly brings up the few topics he remembers, and sometimes his choice of words make it impossible to understand what he's saying (sometimes I can translate if I hear what he's saying). I'm just wondering if I should give them a heads up about what to expect and maybe tell them to just listen and pretend they understand what he's saying? I don't want to make them nervous about interacting with him before we even get there. I'm still not sure how to handle the social situations.

gampiano

Hi Annie 51,

Having been through this , and so much more, I think it would be a good thing to make your relatives aware. Give them a chance to be compassionate listeners. I found that some of the most patient people were the young adults. Most people want to be helpful, and we need to help them to do that. Have a lovely holiday.

In the spirit ,

Maureen

storycrafter

My personal take? I'm a believer in helping people have successful experiences. A little prep can go a long way toward this. When we had a family gathering, with a couple people who didn't really know my husband and a couple who hadn't seen dh in a while, I wrote a friendly, brief note ahead of time to everyone in an email.

I didn't want to overwhelm them with info so I picked out a couple things I thought would be most helpful for my husband. It will be unique for your situation, but for us it was pretty straight forward. I said, they might notice him withdrawing or isolating himself. If so, please don't take it personally. Just allow him to do so without pursuit and give him space. I added something about, he might sometimes make comments that could seem inappropriate; again, it's not personal, it's most helpful to let it go.

We were meeting at a beach house and I didn't know for sure what the living conditions would be ahead of time. In the note I suggested to my two sons/wives that it might be helpful to determine a couple places in the house, once we got there, that my husband could have as retreat/safe place for just him if he felt agitated and needed to get downtime to himself.

It went over well. I sensed everyone appreciated knowing something specific that could be helpful. I didn't have to say a thing when we got there. The visit went smoother than I imagined it would; people just easily slipped into doing the right thing, supportive things.

It's a lot of playing it by ear in the moment, but my thought is... equip people with what they need ahead of time so it can work out optimally. I also planned what I could do for my own self care while we were there, little stuff - a nap alone in our bedroom so I could rest and regroup, a walk for just the two of us on the beach.

Your situation may be much more restrictive and more needs required to be met. I don't know. I hope others with more experience will soon be along. You might want to mention ahead of time that some things have changed since they last saw your husband. Then give a couple brief suggestions about what would be helpful. It's great you're thinking about this ahead of time.

M1

I think it would be fine Annie to send them a group message or email very much in the spirit of this post- also gives you a private opportunity for you to tell them how much you're looking forward to it and to reassure them that it's okay for them to ask you questions if they're not sure how to respond in a certain situation. My son and his girlfriend are going with me to our MC for Christmas lunch, and I plan to give them a similar heads up tomorrow about what to expect.

Kibbee

DH’s girlfriend from high school and college has always kept in touch with him. They haven’t seen each other in many years but recently she expressed interest in seeing him, so I called her to arrange a visit. I warned her she would find him changed from the guy she used to know, and brought her up to date about his current condition. I told her he does best with one-on-one conversations, and that it would be helpful for her to bring an old high school year book or old photos to provide a focus for conversation. (DH still has good long term memory.) When she arrived I put them in the living room with some drinks and snacks, no TV, no radio, and then left them alone to talk and catch up. I knew from experience that if I had stayed it would have been too easy for her and I to start talking and he would be left out.

The visit went well and she thanked me for the heads up on what to expect, as well as the suggestions of what to bring. My take away is that preparing visitors for the reality of interacting with a PWD increases the likelihood that they and the PWD will have a positive experience.

annie51

I appreciate all of these wonderful suggestions. Turns out that the visits went very well and everyone handled it well - it was the times we were alone that caused more issues! I'm learning to navigate through when he gets upset about something, but it didn't happen when we were with the family - that was a blessing and we had a wonderful time. It's so unpredictable as to what will set him off and it becomes very stressful trying to calm him back down.

M1

Glad it went well, important for you...