The last year has been rocky.
Joyful at times. Devastating at others. A non-stop learning experience.
Most of this emotional roller coaster has centered on my elderly mother’s move from East Texas to here. We started planning it over a year ago, intending to place her in an assisted living center just five minutes away. This came after over five years of attempting to persuade her to leave her home of 30 years.
See, she is severely crippled–deformed even–by Rheumatoid Arthritis. The disease is her curse; she worries (needlessly) that it is now my burden.
It is our challenge.
In a cruel twist, the RA that has ravaged her body has preserved, stimulated even, her mind. This means that she is acutely aware of and sensitive to what is happening to her once long, robust skeletal frame. This means too that she maintained a confident air that she could manage her own affairs and stay in her own home past the point comfortable for most people.
An emergency room trip on New Year’s Eve–as I was literally en route to help her move–changed all of our well-laid plans at the assisted living center. She was gravely ill, and yet I had to persuade the hospital to admit her. (Later test results would prove that I was right. She was indeed far more ill than the ER doc realized.)
Plan A was scrapped. Enter Plan B.
Today she lives in a nursing home 15 miles away.
She’s close enough now that I no longer dread a call from the Sheriff’s Office in the wee hours. That was the nightmare scenario that plagued me for years, the one where I dream that I have to beg someone far away to break down the door to get her out of her house. (These are the tortured dreams of the long-distance caregiver, the people that others assume have abandoned their elderly loved ones but who will move heaven and earth to get their parents into a safer environment.)
Her current facility is far enough away that I feel guilty on the days when I don’t visit her, even though she expresses marvel that I make the trip–with a lively and talkative small child in tow–as often as I do.
I know for a fact that if and when she needs to be rushed to the hospital–and assuming that I can find a kind neighbor willing to accept an extra kiddo for a few hours, I can be at the emergency room not long after the ambulance arrives. I can also stand by and watch a tube remove fluids and other things from her GI tract without feeling the bile in my own stomach rise up. (Once you’ve changed enough diapers, you never really go back to being grossed out by bodily functions.) And I know now that I can stand by her bedside, sobbing (who knew that one can cry horizontal tears like lasers?) once when the doctor says its Stage 4 cancer and she should plan for the end. And I can cry again (joyfully) the very next morning when the same doctor leaps out at me with the news that “It’s not cancer! I told you the tests can lie! We can fix this!”
I can weep some days from what is described as “anticipatory grief.” Yes, I feel the absence of her although she has yet to leave me. It’s a horrid feeling.
I’ve also been angry on a couple of occasions this year. I watched my mother struggling for consciousness in a hospital SICU last spring, trying to locate the call button which someone has oh-so-thoughtfully tied up behind her bed making it hard even for me, a wholly able-bodied person, to find it. I have watched her radiate relief when only minutes later I return from the hallway with her top-flight surgeon–he who shakes up the SICU staff just by walking through the doors–and he quickly, efficiently gets my mother a private room with round-the-clock individual care by sunset.
Just before Thanksgiving, I sat in that same ER near here while she expressed anger and frustration at the pain searing through her mid-section. I sat beside her and repeated calmly the mantra: “We cannot have ice chips, Mom. Or water. No, we cannot have anything by mouth.” I visited with Dr. Google on an iPad2 while we await word from a radiologist. I watched her body tremble from spasms. I saw her pupils contract as her body enter septic shock. I’ve heard the doctor say “Your mother’s condition is seriously critical.”
She’s recovering from that experience now and waiting for another major procedure, so we’ve got some difficult moments ahead of us in 2012. But it would be wrong to think of ours as an especially bleak world.
Over the last year, I’ve also seen her face light up with tales of her cousins’ visit, phone calls, the appearance of the local church ladies who have adopted her. I’ve watched her look at two of her capable, efficient nurse’s aides with the love and appreciation I–an only child–know for certain is evidence of a motherly and deep regard. I have watched my son and her as they watch Tom and Jerry, she in her wheelchair and he hanging off the back of it.
All this I know but what I can’t predict is the future… if the next day or week or month or year will be her last… if or when the call will come that I need to move quickly–or “Sorry, ma’am” it’s already too late.
But I know for certain that whatever comes, she and I are strong. A force. She’s asked me twice if we’re “okay.” She worries about what I might wish to have said–or asked–after she’s gone. I told her both times that we’re so clear and free that it’s probably illegal. No regrets. As it should be.
When I stand alone on the other side of this–as surely I will do, I hope to find comfort in the darkness just by knowing that we both gave one another our very best, even during some of the worst moments of our respective lives.
We continue to be present and open and collaborative.
And that’s why I am grateful already for this last, painful year.
I am extraordinarily grateful for every single moment.