Tuesday, June 2, 2015


I've had a routine with my mother for a number of years. I call her in the morning to check in. Gradually our calls have devolved into a few minutes in which I tell her which aide is coming when. Actually I call to make sure she answers. Sometimes she doesn’t. Usually that means she doesn’t hear it over the TV which is turned up because her hearing is poor. I always panic when that happens, fearing she has fallen or worse.

Part of me is always awaiting the "worse". That phone call from my sister, the nearest and hence the early responder.
"Come now. Something is wrong." 

We got that call for my father a few years ago. Jumped into our car and drove through the night. Even though I knew his kidneys were failing on my last visit, knew death was imminent, I still responded, "Oh my God, oh my God!" It's never real until it's real.

A few days ago it became real once again. My sister called and said,"I think Mom is having a stroke". She described the symptoms, but I heard nothing after "stroke". Fortunately she was with my mom and knew to respond. I spent the day making flight arrangements and feeling like I was moving through molasses. I didn't know what to do with myself, unable to calibrate my response to this potentially serious yet still unknown situation.

I thought back to my recent calls with my mom. There had been a change as of late and my sister and I had begun to talk of how we could better support her. My mom had startled me recently when she said. "I'm confused, something isn't right".

"What isn't right?" I asked.

"I was napping" she said. "I'm in my own home," she noted, like a person who has fallen and is taking inventory. No broken bones. All intact. But she adds, "It doesn't feel like I belong here."

Then I got evening call duty, filling in for my sister who calls her in the evening. Evenings with Alzheimer's are worse as the brain gets more muddled. My mother was having a hard time remembering relationships or even when she last saw my sister (the prior day). She knows she's confused which I think is the most difficult stage of this disease. She still remembers that this is not the norm. 

"Hold on to me" she said. My heart aches for her. We talked about how things have gotten harder for her. Just acknowledging that seemed to calm her. "I'll always hold on to you," I said.

I mulled over our conversation. Her home of almost sixty years had a feeling of unfamiliarity. No longer anchoring her by its pull of memories. She's come untethered. And then I thought, "What would that look like?" I pictured her floating above her armchair. The ties that anchored her tightly releasing her like a flower blooming or a hand opening up to release her. She is looking down, her mouth an o of surprise, her limbs floating out around her. Her cat looks up at her wondering what is going on.

I have a sketch program on my iPad and I do a quick sketch of this image with my finger on the screen. A few quick lines on a black background to hold that thought. It is a dark void that she is floating in. Then I set it aside, the idea captured until I can consider next steps. So much easier to consider next steps for a painting than for my mother. "Hold on to me" echoes in my mind.

Next steps are often forced by events out of our control. My sister and I have spent the last few days in a hospital room with my mom. She did in fact have several small strokes, but recovered quickly due in part to my sister's fast thinking. And I do mean FAST. My sister recalled an acronym that is used to identify a stroke. Well she kind of remembered it. She remembered F and A and then debated if the acronym was FACE or FAST. So this is my public service announcement. It is FAST which stands for Face-look for an uneven smile, Arm- check if one arm is weak. Speech-listen for slurred speech and Time-call 911 right away. My sister got as far as A and noticed my mom's arm wouldn't move and jumped directly to T and called 911. 

We've spoken with many health care professionals in the last few days. We especially appreciate those who are good communicators and find the nurses often excel at this. We also appreciate those who can use humor and warmth to engage my mother. We will have more decisions to make in the coming weeks, but are relieved that my mom now seems to be OK, but tired, hit by a truck tired. We joke that it was only a car in this case as she withstood it fairly well. We want to prevent a more serious stroke so my sister and I are working as a team in sifting through medical information. We are both information junkies so after we speak with a doctor we go to our respective computers and read up on treatments and medications, then convene a decision making session. It is good to have a team.

My mother feels more untethered than ever, confirming periodically where she is and what happened to her. Forgetting and then confirming it once again. Medical situations are challenging even when your memory is intact. Having to gain that understanding over and over is especially taxing. The coming weeks will be full of changes for her. We will be there for her with our love and our presence.

1 comment:

  1. Thank for writing this Susan. I've been struggling with some of these issues lately, even though no one I know has been diagnosed at this point with Alzheimer's.