When you were born you cried, and the world rejoiced.
Live your life so that when you die, the world cries,
and you rejoice.
~ Indian proverb
Among the slew of family visitors we have recently enjoyed (oh, happy exhaustion!) was Audie Rae, our first granddaughter. She was born on June 25, 20 days after the official ALS diagnosis. We were in Denver to behold her entrance into the world, cuddle her sweet newborn body and witness her first few weeks of life. What a delectable distraction her birth provided.
The timing of Audie’s birth created a metaphor that is so obvious it borders on trite. The arcs of two lives intersecting — one ascending as the other descends.
As Audie learns to manipulate her tiny, long fingers, she grabs greedily at anything within reach. Jamie’s weak, curling fingers crawl up the wheelchair armrest, and it’s increasingly difficult to manipulate the controller. Audie snatches the spoon from my fingers so she can feed herself. Jamie must be fed. She babbles and coos, trying to emulate what she hears. Jamie is losing his ability to speak. We feel the mystery and excitement of Audie’s beginning. Jamie’s passage, equally mysterious, approaches its inevitable conclusion.
The baby and the paralyzed man, utterly dependent on others.
We have been all about dependence lately. All illusions of control have been abandoned, especially as our carefully constructed cadre of night caregivers has imploded.
It is not easy to find caregivers strong enough to transfer Jamie from wheelchair to bed to wheelchair to toilet to shower chair and back again. We’ve needed men. Male caregivers, or CNAs as they’re called, are uncommon enough, but male caregivers willing to work nights? Almost as rare as an ALS timeline like Stephen Hawking’s.
Thanks to our friends at Palliative Services, we have scored big. The first person sent out was Richard, who started doing early morning shifts in February, back when I could still handle getting Jamie into bed by myself. Compassionate and committed, reliable and good-natured, Richard has been our rock. When he could see we needed additional help, he began working night shifts, putting Jamie to bed, tending to his nightly needs, and doing his morning routine. When we needed to add shifts, he did double duty to train the new guys. When Jamie has an issue, he is determined to solve it. “It’s not a hospice thing,” he tells us, “it’s a Richard thing.” It is impossible to adequately express how above and beyond he has gone for us.
It wasn’t long before he felt like family. I could go to bed at night and sleep peacefully, knowing Richard had it covered. And then he was in a car accident. (He’s OK, we’re happy and relieved to say, but out of commission for awhile.)
We had called him during a mini-crisis — Jamie needed to use the bathroom, and he can’t do that without a transfer. In a panic about how to get him on the toilet, I called the palliative services hotline. They got a message to Richard, and a few minutes later he called us — from the emergency room. Because he is Richard, he apologized profusely. Because he’d been in an accident. And was injured. (Seriously, Richard, take care of yourself now!)
Luckily, Audie’s daddy was here to help with Jamie. We got him where he needed to go just in time, but getting back to the wheelchair required the help of Phoenix’s finest. We called the non-emergency 911, again, for a lift assist. That was traumatic enough, but as we recovered, the real panic set in. With Richard out of commission, we had four night shifts to cover.
Thanks to our amazing community, we managed to get through the weekend with help from a fantastic agency, which was recommended by a friend. It found us a male caregiver to work nights on the weekend. A miracle. Then on Monday, we discovered another of our stalwart caregivers also had injured himself over the weekend. Our carefully constructed weekly care plan now had six gaping holes.
Since then, we’ve been scrambling day to day, with lots of help from lots of people. So far, Jamie hasn’t had to spend the night in a wheelchair, an option that was being seriously considered for awhile. Tania, our palliative services nurse, blew up her afternoon yesterday working to get us assistance, along with several other good folk at Hospice of the Valley. Thanks to the ALS Association’s Arizona Chapter, we now have a Hoyer lift, which will allow me to do Jamie's transfers if needed and will broaden the pool of potential caregivers.
We are being taken care of, and we are grateful for all the people who are scrambling to do it. Although we feel as exposed as newborns (maybe more so, assuming infants aren’t conscious of how precarious their existence is), we also feel the wonder of being held by so many people (even though we’re not nearly as adorable as Audie Rae).
Love,
Maren & Jamie