I couldn’t get mom to look at the camera…

Then when I did she wouldn’t lean back…

So I just had to take the pose to her…

In spite of everything my iPhone can do (and how dependent I am on it for increasingly more and more things) it doesn’t always do what I want, when I want. I made this video three weeks ago when mom and I had a great outing but it wouldn’t upload. I’m finally getting around to doing it from my laptop…

Saturday was a Mom visit. The visit was a difficult one.

When I arrived she was lying in bed. I stood in the doorway making small talk (me asking Mom questions and she repeating the question a few times over) when a nurse walked by. “I just put her down for a nap. She looked so tired all morning.” With that I decided we would break from our usual milkshake run for a morning in.

I struggle with these sometimes. I fell lost for things to say or do. In the breaks between questions I stare at her. I try to think about what she may be thinking about. What is happening inside her head? What does she think about when she turns her sometimes piercing stare at me? I want to tell her that I am sorry this is happening to her. I truly am. There are so many other things I would love to talk to her about. These are mornings in. They are hard for me. So is every car ride home after.

We looked at pictures. I showed her photos of her grandchild. This is so heart wrenching for me. I almost want to keep the photos to myself. Hold them for just me, like a secret I keep from her. It is not that I don’t want to show her. This is her grandchild. She has no other. I don’t want to deprive her of that. But I almost hold them back because I want more of a response. It is one of the things I want most from her. It is the one thing she is unable to give me.

After a few pictures I read a story instead. I know she is not listening. I am like the radio channel they play over the community ads on whatever channel she has playing on her television at that moment.

While reading I start thinking of all the things I want to be different. This is a road that always rips your heart to pieces, but you can’t stop yourself from going down. It’s compulsive. It is the same game you play when you’re driving down the highway, or lying in bed at night around the holidays. I can’t stop it, so I recognize it, and I make an honest list of all the things I wish my Mom would say to me, or talk to me about.

1) I wish my Mom would ask about her grandchild, Eliza Helen.

2) I want her to know that Eliza Helen is named after her, Helen Katherine.

3) I wish my Mom would sing to my child all the songs she would sing to Matt and me when we were babies.

4) I want to listen to her calm voice as she explains to me how to sooth a crying baby, or get her to sleep through the night.

5) I wish she would tell me how beautiful her grandbaby is.

6) I want to talk with her about what a great woman my wife is, what an amazing mother she is, and will be, and how lucky I am to be married to her and that as a parent she is happy I found a great partner.

7) I wish she would help me to ask the questions I don’t know that I didn’t know, but should.

8) I wish she could talk to me in the way parents do when you become an adult, and they become your friends.

9) I wish, just one more time, she could say, and understand what she is saying, not just parrot back the words, that she is proud of me.

I think of these things while I read. She has fallen asleep. I close out the book on my iPad. My background is a picture of a smiling Eliza. I close my eyes and visualize my mother holding her grandchild. The Kathy of long ago would have been the best grandmother.

The nurse comes in. It is time for Mom to eat lunch. I take that as my cue to head back to the highway, and back to DC.

On the way home I sing all the songs she sang to me as a child. I call my wife, who answers the phone while holding the baby, and I tell her I love her. I think about the book I going to read to Eliza when I get home as she is swaddled on my lap.

I drive on, staring out the window. These are hard mornings. I am sad, but I feel proud of myself. After all the terrible things we are all in the best places we can be. I want to smile about it, but I just can’t. I want my Mom to smile again, but she can’t. I think about how there are so many smiles are lost due to dementia.

Next week we’ll do it again.

It was a doctor’s appointment day, which means an hour driving in the car each way. Lately it’s a crap shoot as to whether mom is alert and talking or half in and out of sleep when she rides in the car.

Today she was silent the whole way. Well almost. We pulled into Dairy Queen to get milkshakes and “Raindrops Keep Falling on My Head” came on the radio, and she came alive. She yelled/sang every fourth or fifth word as loud as she could, and of course all perfectly timed to when I lowered the window at the drive thru.

Sometimes all there is to do is to embrace it, laugh and go with it. Here’s a video snippet of the tail end…

Our reality is a strange space. My mom is here, but not really here. And there are times when her not being here is a hole so big you can fall into it.

The day after my niece was born, I took dinner to my brother in the hospital. We sat on a bench by the entrance and remarked at how, for July, it wasn’t too hot, it wasn’t too humid, it was the perfect summer night. While the sun set, he told me about his new daughter and his wife, the whole ordeal as he experienced it, and how everyone had arrived on the other side, exhausted but healthy.

I asked him, “What do you think it would have been like if mom could be here?” It was a question that weighed 200 pounds and I lifted it from somewhere inside my chest and put it in his lap. He paused for a minute and in his characteristically even tone said, “You know, I think about that all the time.”

The truth was we both did. Especially with the baby. My mom took that role so seriously and derived so much meaning from it, that even in her absence, she had so much presence.

For the next half hour we imagined my sister-in-law’s pregnancy and the delivery if my mom had been there. My brother catalogued all the questions he’d wished he could have called to ask her. We laughed at how there would have been no respect for any boundaries or visitation schedules. She would have been at the hospital and that would have been it.

He told me about the memories that came back to him as he was refinishing the old rocking chair that my mom and dad had rocked us in as babies. We created an entire alternate reality of ‘what ifs’ till there was a whole version of a life where mom wasn’t lost.

And after a long pause my brother said, “We have to figure out how to be mom now that she’s gone.” His 200 lbs contribution to the conversation. We talked about what that meant. What was good about her that we had to commit to not losing? What would it mean for two brothers to be maternal, to be mom for each other, and for her grandkids?

And what was there on the bench in front of the hospital is what I think my mom most wanted for the two of us, unquestionable love and connection.

Week 33
day 1 July 28,2013 from 230-530 p. Today we took walk outside, rocked in rocking chair, brush teeth, read daily book readying to her little bit, cleaned fingernails, soaked and cleaned toenails.

Day 2 July 29 from 1030-130 p. Today we took walk, rocked in rocking chair, brush teeth, read daily book, repainted nails blue, played a fishing game, and matched up outfits.

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Day 3 August 1 from 1030-130 p
Today we listened to music, cleaned nails, brush teeth, took walk outside, rocked in rocking chair, and puzzles.

Day 4 August 2 from 3-6 pm. Today we took walk outside, rocked in rocking chair, brush teeth, puzzles, cards, cleaned and clipped fingernails, read daily book, and listened to music.

Week 34-
day 1 August 5 from 1030-230 p. Today we took walk outside, sat on porch little bit, brush teeth, played fishing game, read daily book, curled hair, cleaned nails, and listened to music in activity room

Day 2 August 8 from 11-3 p. Today we took walk outside, sat on porch and rocked on rocking chair, played fishing game, brush teeth, read daily book, went out and looked at flowers, cleaned nails, listened to music, repainted nails pink, and matched up outfits.

Day 3 August 9 from 1030-230 pm. Today we took walk outside, rocked In rocking chair, day on back porch and watched the rain, brush teeth, played cards, played fishing game, read daily book, and wrote some.

It was Christmastime when we found out mom was going to be a grandma. And at the same time I was banned from posting about it on social media. So I sat on this video clip for months. But now that the baby’s arrival is imminent, I am taking the liberty to post this video clip of mom finding out she is going to be a grandma! The “are you excited” face is at the top of my favorite moments we’ve captured on film.