Ways to be in touch in later stages

Katyusha

Hi all, new to these forums and am my mother's primary (long-distance) caregiver since she moved into a very good MC facility in 2023. My mother is in a good way, quite positive and at peace thankfully, if alot of tiredness and some moments of frustration.

As I am based in Europe and she's in the Washington, DC area, I call her once a day to chat and/or the facility set up a FaceTime call with me for about 20 min max.

My mother has always seemed to like these calls. In the calls, we talk about how she is - how she feels, cold/hot/ok/hungry, how's the weather - sunny/cloudy/hot/cold, what she's wearing - pants/sweater/shirt and what color. This worked well and we more recently used ever more cues ("shirt or sweater"?) but I now notice she's barely able to speak anymore except "ok", "uh huh", "thanks" and "bye". I understand that this is part of AD and so I also expect it will get to be even less soon. Also she sometimes just puts the phone down and walks away. In the FaceTime calls, since 2023, we had a nice vibe going and have been looking at old pics I send over and identifying people in them - but now she is getting almost everything wrong and is starting to be a bit frustrated, where these calls used to be a joy for her.

So we need to change our approach. Does anyone have any advice on how to continue to stimulate her memory and wellbeing?

I am thinking about 1) simply looking at photos and explaining who is in them and what is going on and seeing if she has anything to say (the MC staff think this is something that could work).

And also 2) playing music for her - but I have no idea how to do this technically, because I am on a phone and cannot play music (YouTube, Spotify) on the same phone I am calling or FaceTiming on. If I ask the MC staff to play music for her during our facetime, I cannot actually hear what my mother hears and sing along with her and/or enjoy it with her. Any technical advice on how to play music for a relative long-distance?

Also I wondered about things like those Alzheimers Radios - it doesn't seem very practical for her as she's often in a group. Does anyone else have experience sharing music with a relative from a distance?

But I am urgently also seeking any other ideas on things to do to engage her long distance, ideas very welcome. Also ways to communicate/send messages/love when she has even less capacity to respond, understand language later on, very welcome too as I see this coming down the road also.

I see her every 6 months but want to do all I can to try to continue to contribute to her well being. Thanks to all!

Niecey2loved1

It sounds like she is declining and probably not much you can do for her, except be there for her when you can.

(HUGS)

ARIL

How much love is in your posting! I honor that, and I see how much effort you are putting in to maintain connection and to support your mom!

My dad is not so far along in the disease progression, and I recently moved him to a facility near me, so my issues are different but related: How can I help his friends and other family—now hundreds of miles from us—continue to feel connection? The phone is still more or less OK for us, but that will not be the case for too much longer, I know.

Back to your situation. Just a few thoughts—not “advice,” just thinking along with you:

The calls may need to get briefer. She may not be able to sustain concentration on a small object like a phone for very long at all. You may need to learn how to feel satisfied with a five-minute conversation, or even two or three minutes. We both know that being with her in person is the better way to connect, through touch especially, but that’s simply not possible right now. It’s OK to do what you can!

You could certainly try talking through photos. Even when I’m with my father physically, we often look at pictures. I have started describing who I see, or really asking questions that tell him the stories: “Isn’t that a picture of you when you were in high school? Didn’t you buy that bike with money you made from mowing grass? Your mom was so proud of you.” He agrees and might say a sentence or two…or maybe we just conjure up the comfort of these old times together.

As long as she recognizes your voice and that sound brings her comfort, you could just chat to her and not expect much dialogue. You could talk about what the weather in Washington is and what the weather is where you are, or what you did in the day, or some family member that you’ve talked to, or whatever. She might just enjoy listening to the sound of your voice. You can tell her that you love her. You can talk about people in your shared past.

Sorry, I don’t know how to play music remotely while FaceTiming. Another alternative is for you to provide the MC staff with a list of songs you know she likes and let them try to integrate this into her day, whether or not you are able to participate also. That would feel less satisfying for you, but it might allow her to have some good times that you would have caused to happen. That could provide some satisfaction for you, even though it would be less than before.

I guess I see two parts here: How do you provide connection and comfort to her, and how can you feel some sense of connection? I think as the disease progresses, you’ll have to think about love shared synchronously, through calls, but also love shared asynchronously: through things you can tell other people to do with her or to talk with her about, or through cards, letters, and gifts that you could send that other people could show her and tell her that they came from you.

Thank you for posting. I am cheered to learn you are confident in the MC and that your mom is positive and peaceful.

Victoriaredux

In a way a phone visit becomes like running into a nice neighbor on a bus ride — the convo is light , friendly - nothing will be taught , learned or probably remembered. Few questions because they may not know and it maybe stressful for them to try.

I try short simple stories, from the news - luckily one of my PWD still has a sense of humor so I shoot for a laugh. They don't always know who I am ,and their brain is about 40 years back but the laugh , that connection means we had a spark. I'll take an endorphin anyway I can .

This long disease hurts like heck, but then I think of all the times I hear people say— if only I could hear my loved ones voice just one more time or say something— well I can - sad as it is .

amsni89

My stepmom is recently reacting similarly during virtual calls we've had almost daily. She'll walk away rather than staying engaged. It has been my method for giving my dad (her caregiver) moments of respite and I'm afraid it is no longer effective.

Playing music is a brilliant idea. I haven't done this through FaceTime, but it looks like it's possible through music apps that use SharePlay (like Spotify and Apple Music).

https://www.youtube.com/watch?v=i8DksRIQws4&t=13

Would be interested to know if you find any other tricks for keeping your mom engaged virtually. And thanks for sharing your story.

JulietteBee

Hi guys! My mom & I are not in that situation, as she lives 1 miles away.

Have you thought about Zoom? You can both meet together, virtually, and you can share music with her.

Katyusha

Wow! Thanks so much to all for the thoughtful ideas and comments…

@JulietteBee I alternate Zoom calls when MC staff is available to set them up and voice calls when it's not possible, so once a day just before lunch… just that with my mother's language and ability to recognize people diminishing, it's harder to have these conversations and/or to make sure they are positive experiences for her.

In the interim, the staff member at the MC and I have adapted our Zoom calls and the way we look at pics. Never did this before but now we start by chatting a bit about what's going on (weather, meals, recent holidays) - then we say oh would you like to look at photos, we have some here.

And when looking at the photo instead of saying who's that, the MC staff member says, hmmm, does anyone look familiar here? A nod yes. Great, who could that be? Your mother or your aunt? Is that Mary or Virginia? It works a bit better and seems to have more consent from my mother and a bit less stress when she gets things "wrong" and can't identify people or can't think of the name. Also, weirdly, we (MC staff and I) feel like my mother actually "gets the hang of it" in the course of 20 minutes looking at pics so suddenly starts to recognize people after seeing them several times again.

@ARIL thanks so much for your beautiful kind words - really much appreciated, and I think: yes, shorter calls regularly is just fine - love the idea of the chat on a bus ride @Victoriaredux. And thanks @ARIL for seeing that: yes we are all doing what we can, and that's what counts. And it's so reassuring that I can 99.9% trust that the MC is doing everything incredibly well and that my mother is overall upbeat if sometimes tired and frustrated at times.

And I definitely see the point about sending love that is synchronous and asynchronous, that makes a load of sense, and now I am happy I send postcards when I travel - I might do it more actually! - and I know MC staff reads them to her. I tried with giving the MC staff tailored music she likes but it's hard for them to play it for her specifically, for all the good reasons - she's actually with the group in the common room all day, doing activities (including listening to music), or at meals - so she's stimulated by 10001 other things.

Last but hardly least about taking pleasure in just the fact of the call/sound of the person's voice - I noticed the last few voice calls I did, MC staff says "your daughter is on the phone" and I hear my mother give a little delighted "Ohhhh!" which is worth the entire call.

And wow don't know SharePlay @amsni89 - thanks so much, will have a look!

Thanks and sending you all much solidarity and wonder at everything you all do and much gratitude for your kind words and for taking time to share your wisdom. More power to you all.