a story about being with the people you love, whatever the state of their brains

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January 25, 2019: I struggle between my twin needs for solitude and connection. Today, I missed a loving touch, and felt a little lonely. So I did something I haven’t done in a long time: I opened the file of archived audio recordings I have from when Mom was in #DementiaJail, and randomly picked 2016, the year she died. Today’s date was near the top of the list.

My visitation “privileges” had been confined to between 1 and 3 p.m. for almost a year at that point, and most days Mom was “asleep” (i.e. sedated) during the time I was allowed to see her. I would sit by her side, and hold her hand, helpless and furious about the situation in which we were so cruelly confined.

I clicked on the January 25th file, and listened. What I heard filled me with sadness, joy, grief and hope. I was extremely touched by the first few minutes of our conversation, which to me clearly demonstrate that people living with Alzheimer disease want and need to remain closely connected in relationship with those around them, particularly those they love.

Here’s a clip (which to me says it all), from the start of my ninety-minute visit with Mom that day three years ago (transcript below if you want to read while you listen)

Transcript

Susan: Patty? Patty? Hello!

Mom: Hello.

Susan: How are you?

Mom: How are you?

S: I’m very well. How are you?

M: Fine.

S: Good.

Yeah.

S: I’m happy to see you.

Yeah.

S: Hi.

Hi. (A long pause) I…I…I like seeing you.

S: I like seeing you too Mom, very much.

Yeah.

S: I like seeing you very much Mom. We still have fun together.

You have eh?

S: Yeah, we do.

Well that’s kinda nice eh?

S: It is kinda nice, Mom.

Yep.

S: it’s very nice.

Yep.

S: We’re lucky that way.

Yeah.

S: Not everyone is as lucky as us.

Nope.

(in an incredible moment of synchronicity I go to turn down the volume on the TV, and a voice on the talkshow that’s on says something like:

 “…and it was a real gift to be able to say how much he brought to her life, and how much she loved him and what an honour it was to care for him when he got sick, and that was really beautiful to me, and I think one other is one other thing i would say is funerals are for the living so it’s so important to tell the people you love how you feel about them before they depart, don’t say it at the funeral when they can’t hear you.)

S: Mom?

Yeah.

S: Would you like to go down and have some tea with me?

Yeah, I would. I would. It would be nice.

S: Okay. Shall we do it then? Let’s do it. I’m going to lift your chair up okay? I’ll get your other chair first. (I get the wheelchair) Okay Mom. Patty?

Yeah.

S: I’m going to move this chair so you can stand up okay?

Yeah. You’ll like that eh Sue?

S: I do. I like to spend time with you.

Yeah, well…. I like to spend time with you.

S: I know you do ‘cause I’m fun (I laugh).

(Mom laughs) you…you…you…have fun.

S: …and we joke around together…

Yeah

S: …and we do some spelling…

Yeah.

S: …and you are an excellent speller…

Yeah.

S: …you can spell every word in the dictionary

Yeah, it would be fun wouldn’t it?

S: It would be fun, Mom,

Yeah.

S: …and then we do some singing…

Yeah, that would be nice.

S: How are you feeling today?

I feel good today.

S: That’s good. Were you having a little rest?

Yeah, we were having a little rest, but it was a nice rest.

S: Good. I just need you to lift your bum up a bit Mom.

It’s nice though, it’s nice.

S: Lift your bum up Mom. Again. (As I free Mom from the various “bells and whistles” that are attached to her so I can move her from the recliner to the wheelchair, they begin to sound their respective alarms. “Oh shut up!” I scold the bells and whistles in frustration)

Oh yeah, well you…

S: That thing drives me nuts Mom. It drives me crazy.

Well, it drives me crazy too.

S: It drives you crazy too?

Yeah. I don’t blame you.

S: What about it drives you crazy? That sound?

Yeah.

S: Me too. Are you ready to stand up?

Yeah I’m ready to stand up.

S: Okay good. We’re going to transfer over to this chair okay?

Yeah, well it is a chair.

S: It is a chair. I’ll put your feet a little bit over like this…okay, ready?

Yeah.

S: One, two, three, stand up, Mom. Excellent. You stood up easily Mom.

Yeah, it’s true.

S: It is true. Can you take a step?

Oh yeah, sure I could.

S: Okay good. Hey, you’re doing well. Keep coming. Okay, I’m going to turn you around over into this chair, Mom. How’s that? (She sits in the wheelchair)

Oh it’s lovely. It’s nice over there.

S: It’s gorgeous. Do you need to go to the bathroom?

No, I like to go to the bathroom though.

S: The peeps? Should we go the tea first and peeps after?

Yeah that would be nice.

S: Okay, let’s do that then. Yesterday when I came you were asleep, Mom.

Oh no. I was a asleep?

S: Yeah, you were sound asleep.

No.

S: Yeah, but you’re awake today.

Maybe I’ll be awake today and another day (Mom claps her hands)

S: Good clapping. Clapping on your…?

Gapping!

S: Yes.

What can you spell today? Can you spell clock?

C-L-O-C-K.

S: Yes!

C-L-O-C-Kay on your little pay.

S: Yeah. (I laugh)

Oh, It’s fun to go over there.

S: Yeah. And it’s fun to do spelling. We’ll do some more downstairs.

Yeah, that’s fun….

~~~~~~~~~~~~

I miss connecting with Mom in this physical plane. I’m glad I have these conversations to reflect back on. I’m grateful I said “I love you” to her just about every day for the last four years of her life. Lucky us <3

we all go through rough patches. here’s one thing that can help us get to the other side.

four years later is too late for my mom. but it’s not for others.

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JM