Cumpleaños

Tomorrow is Mom's birthday. She'll be 82. If you'd asked me last August when I was writing Time I wouldn't have thought we'd see this day. Her struggles with renal disease, congestive heart failure, diabetes - all these factors laid the odds against her survival. And yet she has.

I won't pretend it's been easy. There has been surgery for a peritoneal catheter, endless training on manual dialysis exchanges, and then overnight cycler training. Helping her overcome her fear of the unknown, her fear of the machine, being intimidated by all the information coming at her. My brother and I took turns going to both sorts of training with her, together we helped create first an environment for manual exchanges and then one for the overnight cycler. We went with her to doctor's appointments where we took notes, asked questions, became her advocates. We educated ourselves on her disease, the treatments, the diet, the risks...

In the meantime, our lives have gone on. For my brother and I it was work, family, house projects, responsibilities. For my parents, the deliberate routine of their days: appointments, visits, shopping and the denouement of the week - seeing the kids and grandkids. In spite of their frailty and disabilities, they continued to manage to live - independently dependent. My brother described it as a 3-legged stool...one leg breaks, the stool is no good.

Dad's relative freedom of movement offsets Mom's limited mobility; Mom's awareness and sharpness compensate for Dad's cognitive limitations. Together, they are whole. Take one out of the equation, and it all falls apart.

A leg came off the stool last month.

Mom suffered a recurrence of the issue that had her in the ER last August. She was admitted to the hospital for a weekend, then released. Once released, she developed a wet cough that rapidly degenerated into a full blown respiratory infection. She was hospitalized again, this time for two weeks...and we nearly lost her. It was recommended that she spend a few weeks in a rehabilitative setting before coming home, 2 weeks off her feet took its toll on her already limited mobility.

She's been in rehab for five weeks, and she still can't stand. "We aren't seeing any functional progress", they tell us. "Without functional progress, we will need to discharge her." We continue to advocate. "What's the next step in her pain management protocol?" we ask. They ask us what we'd like them to do. We are gobsmacked at how passive the process is. Nothing is done without us pushing them, without aggressive advocacy and relentless phone calling. The waves of her care and her needs and her demands wash over us, but she is like a cork atop the foam, riding where it takes her. We encourage her to be her own advocate, too. Tell them to do your dialysis earlier. Tell them you want analgesics before therapy, not after. Try harder. Push yourself more. 

But tomorrow, there will be none of that. We will go see her with cake and cards and flowers, and we will celebrate that she made this milestone. I will be tasked with finding her Efferdent and filling her water cups and taking her dirty pajamas home to launder them.

And I will be glad to do it.