Does Anybody Have a Map?

In 2019, I slid into a Broadway touring performance of Dear Evan Hanson just as the initial song was beginning. As the number started, Does Anybody Have a Map, tears welled up and spilled over. The message felt 100% true to me. Briefly, the song is a duet by 2 mothers in very different parenting situations. They’re doing their best, but every step feels like a misstep. On that day, I was coming from an intense conversation (read argument) with one of my adult kids. We both felt the familiar pattern that was wallpapering our relationship at that time.

I’ve felt that feeling over and over. A decision has to be made about something important (e.g. approach to parenting; switching churches; going back to school; starting therapy; take a trip during COVID), but I’m not really sure what’s the best/right/correct thing to do. And often there’s NOT a single RIGHT path to find.

“Does anybody have a map? Does anybody happen to know how the hell to do this? I don't know if you can tell but this is me just pretending to know. So where's the map? I need a clue. ‘Cause the scary truth is I’m flying blind and I’m making this up as I go.” (song writers: Benj Pasek & Justin Paul).

For the past 12 years, I’ve been the primary, care-er for my mother. I say care-er, meaning others are doing the direct physical care, but I’m the primary local advocate, manager, decision-maker regarding her housing, medical care, and financial details.

My mother and I have NOT had an idyllic parent/child relationship. I was a quiet kid at school and a sassy kid at home. I pushed buttons, pushed back, and used my words like swords to poke all the raw places. At the same time, my mother was coming to terms with her own mental illness and complexities in her marriage. I spent a lot of years distancing myself from my family of origin in order to find and ground myself. My mother…she was following the map of her own journey.

In my early 40s, when the intersection of my mom’s mental and physical health needs pointed toward it, I backed reluctantly into the care-er role. I wasn’t resentful about this, just ambivalent. It was a decision of logic and duty. I had a stable life and good health, no small children, wasn’t supporting others with disabilities, and lived near a great health system. As I read those words, they sound flat, emotionless. That’s the tone I felt at that time.

The past years have been a time of reigniting the coals of a cooled relationship. Today, my mother and I have a deeper mutual respect, affection, and understanding of each other than perhaps at any time in our lives. I’m truly grateful to have had her living close by these past 12 years.

Several months ago, a nurse in my mom’s assisted living facility pointed me to changes in my mother’s cognitive levels and asked me to consider whether it was time to make a move. Mom was often forgetting what day of the week it was (I had attributed this to that COVID-every-day-feels-the-same experience), forgetting the time to participate in favorite activities (Saturday night BINGO) and regularly mixing up the sequence of how to inject her insulin, something she does multiple times a day. Reflecting honestly, I had noticed mixing up of details around medical appointments or transportation, {especially if there were multiple moving parts) and she was repeating herself more often. Unconsciously, I had changed the level of support I provided her. For example, I always did a 10-min reminder call to make sure mom remembered our plans. And yet…our conversations seemed mostly the same as always, and she could still play her favorite dice game (albeit with some support for scoring).

How does one decide when it’s time to move a person? Does anybody have a map? We could wait for a clear block in the road (e.g. falling and breaking a hip; forgetting how to return to her apartment), but that crisis approach has never been our M.O. A tipping point for me was when my mom forgot we were coming to pick her up for Christmas Eve dinner.

I did the responsible things. I talked honestly with my mother about the nurse’s observations, her own awareness of increasing memory challenges, and what I had been noticing. We outlined, with input from my sisters, reasonable criteria for the timing of a move. Putting logic front and center, I stressed the importance of deciding when there was not a crisis. We discussed places she might want to visit. In the end, we scheduled a visit to the cottage setting in her current facility together. Then we just paused to think about timing. My sisters were fully on board with any timing I deemed appropriate. The weight of when was pretty much my call.

Omicron COVID was running wild, so that was a reason to wait. Mom was falling more often, so that was a reason to proceed. Two of my siblings couldn’t help for several months because of their own health things. One was available to assist right away. The soundtrack of Does Anybody Have a Map, kept running through my head. Was I rationalizing the need for a move prematurely or was this forward-thinking before a crisis?

We moved mom a couple of weeks ago to the cottage setting. I’m 85% certain this was a good move to make at this time. Questions still linger. I second guess myself. But I will talk with confidence about our rationale. I don’t know if you can tell, but this is me just pretending to know. Where the map? ...I’m making this up as I go.

- Jt