How do you keep in touch with friends and family?

machelriller

My dad moved to memory care about a month ago. He moved states, about a 5 hour drive, to be in a facility closer to me. At first I had hoped the MC staff would be able to help my dad talk on the phone or zoom with friends/family, but I don’t really think that’s something they do. My dad doesn’t have his phone because he hasn’t known how to use it in ages, and I don’t think an Amazon echo or a laptop would work for similar reasons. (Also he unplugs everything and moves it around his room.) He is still really social so I know he would like to talk to his family and friends. Other than setting up a phone call or zoom when I’m there, are there any things I’m not thinking of? They are all planning visits but because of the distance that will be infrequent.

M1

Machell i think your plans for making phone calls when you are there are probably the most feasible. If he is an extrovert he may start socializing with fellow residents, so that he won't miss his previous contacts as much as you might think. Hope it goes well.

harshedbuzz

@machelriller

I know a number of people who "visited" their LO's in MC and other facilities via Facetime or Zoom early in the pandemic when visitation was restricted. Most of those who had dementia found the experience confusing while with family found it unrewarding as it was difficult to engage their LO.

While I expect a MCF would try to accommodate this request if you asked, I think it makes more sense for you to be the one who scaffolds your dad in this activity as you would know enough about the individuals involved to remind him who he's talking to and help the others engage appropriately. You certainly don't want the experience I had with my parents' former neighbors criticizing my decision to move them near me and my refusal to let them travel down to FL for a few weeks in the winter.

Another piece to this is that many friends and family struggle to communicate with a PWD and withdraw from the relationship as the disease progresses which means he probably wouldn't be interacting with his old friends even if he was still in his old community.

I would encourage getting him to the activities he might enjoy and help him socialize with the other residents. Staff generally are happy to facilitate friendships between residents who are social.

HB

psg712

https://alzconnected.org/discussion/comment/186884#Comment_186884

@harshedbuzz this is valuable insight. Matches what I have experienced after moving my mom from out of state. Have also encountered disbelief from family/friends who ask me how she is doing but really don't want to know the truth of her cognitive decline. They want to remember her as they knew her in the past. Understandable, but isolating for me.

leslie_ann

@machelriller

We used a video phone for my Mom while she was in MC. She was able to easily call us and the auto answer feature allowed us to call into her room. The screen is much larger than a smart phone or tablet. It is a little costly but I felt it was worth it. See the link below. I also used an app called RecallCue. Best wishes. ❤️

https://www.konnekt.com.au/?gclid=CjwKCAjw7oeqBhBwEiwALyHLM9fvLgSG_ygwcUc1eHUq4liuNC7tqx4Ce7bWk_D-rPwQmXWKq3KNDBoCiZMQAvD_BwE

machelriller

Thanks everyone, all of this feedback is helpful! I think I will be there to help him with the calls. Part of my issue is that some of our friends and family don't believe that my dad's dementia is as bad as it really is, because he is charming and funny socially still. So they think he should be able to operate a computer to Zoom with them, which he hasn't been able to do in years.

Bluecard 18

I have some related questions and concerns about phones and keeping in touch with family and friends, as recently moved LO to new state as well to be close to me. I appreciate all of the above questions and comments so much. I know many people think my loved one should have access to the phone, but he doesn't know how to use it to call out, may answer calls from spam callers, may be disturbed at night as no settings), etc., and, perhaps most of all, it is clear he doesn't always know how to answer questions or doesn't remember the answers, so he just fills in with what he thinks is conversational. And I know I will need to be there to help him with the calls, to your point, machelriller, as many don't realize his cognitive challenges are as bad as they are because he can be conversant and charming as well. And as noted above, I can help others engage appropriately.

Are there any suggestions for helping to do that (help others engage appropriately) without looking like I'm trying to control the conversation too much? I am learning that it's best to not ask PWD certain kinds of questions and may be best for others to just bring up what's going on with them to start conversations. Insights welcome.

Thanks.

Anonymousjpl123

I installed a land line for my mom because she kept losing her cell phones and couldn’t figure out how to use them.

Thankfully not a lot of cost because she still struggles with even the most basic phone, and I’m not sure calls to her friends are what they used to be.

You will probably do best facilitating the calls (“hey, guess who wants to say hi!”) or planning them. For me the land line makes that easy, but either that, zoom, or even your cell should work as long as you can get his friends on the phone.

psg712

Anonymousjpl123 is right. You are facilitating the calls, not controlling them. Since your dad's friends don't live nearby, they have no way to know his level of functioning unless you provide that information.

A few suggestions to them would be kind. You have a good idea to ask the friends to start the conversation by telling him what's going on in their lives. Encourage them to avoid "remember when we ..." or "remember Jimmy's son ..." or "remember" anything. Stay in the present.

It's hard for old friends to grasp the changes in our loved ones when they can't see them. With my mom, I also found that it became harder for her to understand who she was talking to when she couldn't see their faces. We tried FaceTime, but that freaked her out. She simply couldn't understand that the video on the screen was a friend talking to her in real time. But if your dad still enjoys talking with friends, do whatever you can to help him to connect with them.

M1

We're two years in, and phone calls just don't work very well any more. We occasionally call my partner's one surviving sister from my cell phone when I'm visiting, but really it's painful, she just doesn't communicate on the phone well any more (doesn't do that well in person, frankly). And her brother in law keeps asking her stupid questions that she can't answer ("How do you like your new facility?" )-she doesn't know why she's there, or that there was ever an old facility. At some point.--and I think we're there, now solidly in stage 6) I think you just have to let it go. The phone is now pretty much a thing of the past, along with all the people it connected her to.

Introvert myself, I remember in her heydey being stunned at how often her phone rang and what a wonderful range of people she knew and would stay in touch with. She was very charismatic. So sad, and I so wish this were over. For her, for me, for all of us.

psg712

https://alzconnected.org/discussion/comment/202995#Comment_202995

I relate to this M1. When my mom moved to MC in January, I chose not to set up a phone. She hasn't missed it at all. I do call my sister from my phone so they can talk, but it isn't much of a conversation- similar to in person. Mom's brother actually talked with her recently- first time in at least a year - and she kept handing the phone back to me because she didn't understand his questions, or (I suspect) who she was even speaking with.

I try to live in the present and not think about who she was before dementia gutted her of her intelligence, warmth and humor. (It also took her quick temper and judgmental attitude, which we don't mourn - a tiny silver lining but not worth the other losses.) I can only dimly imagine how much harder this is when it's your life partner instead of a parent. Teary hugs for you.

Bluecard 18

https://alzconnected.org/discussion/comment/202977#Comment_202977

Thank you, @psg712, and everyone else for the suggestions and support on this. I agree that many people ask about the "new place" and he does just "fill in" with misc., and he also confuses this place with the last place he was in. I think you're right about the difficulty for old friends to grasp the changes, and now that I'm seeing him so much, I am really seeing it and how much has been declining over the last year(s). I'll try to suggest that those on the calls let him know what's going on with them and not focus on "how it's going" as it's just going fine, or "missing seeing/talking to him" as that can make the conv emotional.

I also know that some would like a lot more contact than is feasible with everything else that goes on, which is hard, because I know they miss him being around/nearby. I feel badly about that, but it is stressful for me because I can't do as much of that as they want--the timing isn't always right when I'm there or he doesn't have the energy for calls, or we are in an activity, or he's tired, etc. I do want to keep him in contact with people who love him and care about him, as I know it's impt--it's just another challenge to deal with, I guess.

Maybe I just need to explain separately that I have to facilitate the calls so it can't be as regular they would like, that they may not realize the level of his dementia, short term memory, and other cognitive challenges (even while "doing great"--which he is), and that I understand they miss him and am trying.

machelriller

Hi @Bluecard 18, I was happy to see this thread pop back up. Now that I'm about six months into MC, I have to say that this dilemma had gotten so much easier for me. At first, I was so worried about other friends and family members and what they would think and if they would be disappointed to not have as much access to my dad. But I have just needed to accept that maybe some people will be disappointed, and I need to let go of that and save my energy for what is most important, which is taking care of my dad and taking care of myself.

I decided to start letting the family and friends see my dad's "real" dementia, and not try to be there to scaffold or help all the time. He has had a few visitors and I have not always been there when they visited, and I think it was a real wake-up call for some of them to realize that my dad has declined more than they thought.

I have set up a few Zooms and phone calls though. Zoom is definitely better for my dad. Phone calls are hard because he doesn't always remember who he is talking to. And Facetime is hard because it is a little more chaotic and he has a hard time figuring out how to hold the phone. My dad is a big music lover, and two of his friends set up a Zoom where they watched the music videos of Grammy-nominated songs and then discussed them. It was REALLY successful and we all had a great time. I sat in the room but mostly stayed off camera to give some "privacy."

As time has gone on the other people in my dad's life have eased up on me in terms of needing to be in contact. I think they were all grieving the transition as well. I now have to manage out-of-town guests, but I'm working on boundaries there and reminding myself that I don't need to chaperone every visit.

In the meantime, my dad has made friends at memory care and he is getting plenty of social interaction throughout the day. Between my visits 2x a week, once a month out of town visitors, his friends at MC, the staff, and a local family friend who visits occasionally, my dad is definitely getting more social interaction than he was at home.

I hope everything goes as smoothly for you, Bluecard!

Bluecard 18

https://alzconnected.org/discussion/comment/204202#Comment_204202

Thank you so much for your insights and encouragement @machelriller. I'm working on this: "At first, I was so worried about other friends and family members and what they would think and if they would be disappointed to not have as much access to my dad. But I have just needed to accept that maybe some people will be disappointed, and I need to let go of that and save my energy for what is most important, which is taking care of my dad and taking care of myself," and sharing the "real" dementia. And your other comments are so relatable as well. Thanks. . . I'll keep you posted.