week 19
day 1 today we walked arnd,brushed teeth,played cards,listened to music,read daily book,and looked at newspaper.
day 2 today we walked arnd,brushed teeth,puzzles,read daily book,and played memory game.
day 3 today we walked,listened to music,puzzles,went outside for a walk and rocked in rocking chair,lotioned and massaged hands and feet,matched up outfits,and read daily book.
day 4 today we listened to music,cleaned nails,puzzles ,walked arnd,repainted nails,read daily book,and brushed teeth.

week 20
day 1 today we walked arnd, puzzles,brushed teeth,read daily book,went to theraphy and peddled bike,listened to music,and trimmed and cleaned fingernails.
day 2 today we played cards,read daily book,brushed teeth,listened to music,walked arnd,went outside and sat in sun and took walk outside.
day 3 today we went to theraphy and hit balloon around,walked around, redid nails orange,brushed teeth,read daily book,and did puzzles.
day 4 today we walked arnd,puzzles,brushed teeth,read daily book,folded clothes,played tic tac toe,and went outside and rocked in rocking chair

I’m four inches taller than my mom, and our legs are the same length. I know because we measured when I was in college. My mom, brother and I lined up side to side, and it was quickly determined that my brother was all torso. So we had a runoff for longest legs. Using the big wooden yardstick that hung on the kitchen wall, we called it a tie between mom and me.

I learned to walk fast by spending years trying keep up with her. She walked purposefully through a grocery store, through a mall, across a parking lot, to the neighbor’s house. She’d take big, bounding strides and if you weren’t paying attention, you’d be a jog’s pace behind her in a few seconds.

When we moved her to the nursing home she’d spend most of her waking moments walking up and down the halls, getting into trouble as she’d go, being her normal, nosy self. But now she’s starting to have trouble with balance and coordination.

I’ve been so worried that as she started to lose stability in these late stages that she’d fall and break her leg, or worse. I asked about training her to use a walker so we could prevent it, but the physical therapy unit evaluated her and determined she’s too far along to learn to use it.

Here’s the ironic thing, as she’s lost stability walking, she’s simultaneously lost that initiative to get up and go independently. She still walks whenever you take her by the hand and lead her, though she has to stop along the way to sit and regroup. But when you put her in a chair, or put her to bed, she stays there till you come and get her. It’s a bit of divine intervention really.

Here’s some video from last week’s walk to see our favorite trees in bloom…

And the good-byes to the pink trees…

We are a very expressive family. We don’t just tell stories, we animate them. My brother’s stories are probably the best because he has a great ear for accents and so they always find a way into his stories.

My mom was always easy to read. You’d see how she was feeling or what she was thinking written across her face. It’s been one of the things I’ve missed of late. She mostly wears a serious look these days, sometimes a frustrated look. It’s hard to tell what’s going on inside.

That’s what made the discovery of the sneeze face so incredible. Joey and I were visiting when my mom’s allergies kicked in and she had an epic string of sneezes. And in each one was this crazy, contorted expression that was so funny and so wonderful because it was so different from what we have gotten used to. We couldn’t help but double over laughing. Joey managed to get the tail end of it on video…

I haven’t written for the last two months because I needed some space.

We have moved into the last phases of this illness, by all the neurologist’s accounts. Mom is losing speech. She is shaky with her balance. She needs help to walk. She needs help to eat.

There is an inevitability that wasn’t here before, or wasn’t here with as much realness. It’s an inevitability of loss that has been magnified because I can see the loss of what is most basic…eating, walking, talking. I’ve needed a little time to personally grapple with it.

What’s here now is chaos and calm. That’s the best way to describe it. There is not what I consider a large middle ground. There is either struggle and difficulty or peace and ease. They are opposites and yet they coexist. And it’s ok. I don’t think it’s realistic to expect only calm. Not with how difficult this disease is to understand and live with. And so what is realistic, and quite frankly probably a blessing, is that the chaos is measured and it is tempered with large reserves of calm.

For example…the chaos of trying to put on sunglassess…the calm afterwards of sitting and rocking on a porch…

This is mom’s new relaxing in bed pose. It cracks me up.

Recent update of activities for those of you who wonder what mom is up to:

week 7 jan 27 1030a-130p: today we did her hair,walked around a bit,listened to music,brushed our teeth,and went to activities for a bit.

day 2 jan 31 from 3p to 6p: today w walked around,redid our nails white with pink tips,listened to music and sang,looked at pictures of places in wv,puzzles,and brushed her teeth.

week 8 feb 5 from 1030a-130p: today we went to an activity in dining room and colored a picture there,walked around,went to act room and listened to jukebox,looked at bonton paper she liked this red coat in there,brushed teeth,and she laid down little after 1 for a nap.

day 2 feb 6 from 3p to 6p: today we walked,listened to jukebox,soaked our nails and lotioned them, redid fingernails dark pink and filed,soaked feet and lotioned them,and brushed her teeth

My mom is losing her speech. It’s noticeable. Actually it’s been noticeable, but now we talk about it. Driving home from our visit on Sunday, Joey and I talked about it. That’s how things happen with us, and I suspect we aren’t that different from you. We notice something. Then we notice it as a pattern. Then we worry about it, and what it means. Then we eventually talk about it.

Something “is” for a long time, but it’s not until we talk about it, out loud to each other, and agree on it, that it “really is.”

And I get why that’s true. Sometimes, as irrational as it is, you want to just live in the space between noticing it silently and noticing it out loud, because once you notice it out loud, you can’t “un-notice it.” And once you notice it out loud, and you confirm that it’s something bad, it means you are once step closer to whatever the next thing is.

For right now it’s losing speech. Not talking…talking in a really loud monotone…slurring sounds instead of making words.

And to sit with that is really awful.

Yet there is something wonderful happening as well. Mom is writing. There is a notebook where the momsitter helps her write notes to me and to Joey. They are short sentences, maybe 2 or 3 per note, but much more than we’d get in conversations with her now.

Adapt. Adapt. Adapt. Decades from now if you ask me what will still have stayed with me about this journey, what my mom taught me about living, it’s about how amazingly adaptable we are. Each loss means a some new way of adapting to it. Some new way she inspires me.