Caregiver – is that my new role? I saw the term listed in black and white on the ALS support group form someone asked me to fill out today. The kind woman explained I should put my information in the caregiver block. Really? Doesn’t that make it official somehow?
My husband of almost thirty years has been diagnosed with possible amyotrophic lateral sclerosis (commonly referred to as Lou Gering’s Disease) and we have been referred to a clinic that specializes in the treatment of neurological diseases at Duke University Medical Center. We know from our Internet research some of what to expect and none of it is pleasant. Basically all of his nerves will over-fire until they burn themselves out, causing his muscles to atrophy and die – his diaphragm being the last to give up in this slow and agonizing death. It’s not something to wish upon your enemies lightly.
His legs are the first to be affected and he walks a bit like Herman Munster right now and can’t move for any distance at all before losing his breath. I’ve already seen his fingers and jaw tremble on occasion and suspect he will need assistance very soon. Weren’t we supposed to celebrate our big anniversary in Italy this year instead of picking out hot rod wheels for a power chair?
Bathing him and turning him and feeding him will be the simple tasks ahead. I may face feeding tubes and tracheotomy lines if he lives long enough. I’m already thinking he may be luckier if he were hit by a bus. How does a girl who almost faints while caring for newly pierced ears take on this kind of nursing? And can I physically do it? He has at least 100 pounds and almost a full foot on me and used to bench press me back when I was his skinny new bride and he was a hulking athlete loosening up for a ballgame. This new role changes our dynamic. If I’m his caregiver, who will care for me?
I’ve helped my mother for several years now as she goes through her dying years with progressively worsening Parkinson’s disease. I’ve fed her and bathed her and parceled out medicines and kept her entertained. I’ve moved her from lift chair to wheelchair to commode to bed. But mostly I’ve watched her ever so slowly die. And my husband and our home has been my sanctuary, where I escaped to recuperate from the pain of slowly watching someone I love die.
Nurturing comes naturally to some women. Not so much to me. I love my family desperately but pride myself on not coddling. I was Dr. Phil before he was and briefly considered a career in psychology but thought I was too bossy. I relish telling people what to do and expect them to go do it already. Tell me your problems and I’ll fix them quicker than most men.
I raised two daughters and gave them lots of warm affection as children but I mostly taught them to care for themselves. I did the work required but I’ve never considered myself particularly warm and fuzzy and often dreamed of fleeing to a single room somewhere all alone. That tough love might have made those around me stronger people but surely hasn’t won me any popularity contests. Now at an age when I’m accepting my sharp edges, I may have to find a new caring gene.
Making a large check with my pencil over the appropriate box on the form, I feel that I am sealing my fate. My friendly smile hides the real terror I feel at what I’m signing on for here. Despite this new role, I will fight to be more than a caregiver to this man I’ve loved and enjoyed sparing with for what feels like a lifetime already.
We arrived early this morning for an 8:30 appointment at Duke, fortunately only 30 miles from our home. We checked in with the nurse and then met the doctor briefly and went through a short exam. He explained the plan for the day and promised to see us again in the afternoon.
We went to the main hospital for some additional testing first. My husband describes the nerve conduction test as being zapped in different areas of his body with a cattle prod while the technician records his movements. Is it better to feel more pain? We think so but learn later the timing of the movement is the main point. The pain is a freebie. The Electromyogram (EMG) involves the insertion of needles in various muscles to record their level of activity while at rest and during contraction. Electrical activity in a muscle at rest indicates a problem. And the needles aren’t so fun either.
After a quick lunch, we’re back at the ALS clinic and tucked into a small examination room. Each therapist will arrive to visit with us here instead of moving around for each appointment.
We see a respiratory therapist who measures the diaphragm breathing at 85%, somewhat compromised but she doesn’t appear concerned. I can only assume it should be 100% but don’t know for sure and hesitate to ask too many questions as I jot down quick notes. She suggests breathing exercises to help the diaphragm stay strong.
A speech therapist comes next, and has my husband read to check for slurring of his speech. He hates to read but complies, reciting the silly little printed script. Speech seems fine and she notes her measurement for future testing.
An occupational therapist talks to us about setting up equipment in our home to help my husband move around more easily. She also suggests using a rolling walker or a power chair. “Take up small rugs and move furniture to accommodate him and prevent falls.” Slow down here a second, I want to say. Are we really ready for all this?
A physical therapist comes after that, and gives us some stretching exercises to keep the limbs relaxed but strictly forbids any heavy exercise or work. This will only wear out the nerves more quickly. Although my weightlifter husband has already experienced this he refuses to accept it. “But exercise is good, isn’t it?”
“Yes,” she agrees, “but only to a certain point with this disease.
A representative for the medical equipment company the clinic uses comes to talk about vans and power chairs and other assistive technology. My brain takes a brief but needed break. Surely this can wait. My husband drove us here today and still seems strong and sure behind the wheel. Although it occurs to me for the first time to wonder how he is able to use the brake and gas peddles if he can’t really feel his feet.
My husband sits calmly through all the examinations, without complaint. He is a saint, whose calm composure I can only strive to achieve. Why are my thoughts jumbled with questions? Why am I the one silently screaming, “Why me?” and he isn’t. I hold my tongue. I feel instinctively the caregiver shouldn’t complain. What right do we have to voice discomfort or complaint when we’re not suffering any of the physical pain?
The examination room is bright with sunlight on this warm winter afternoon after days of cold rain. Shadows from the blinds make three identical marks across the tile floor of the room as we wait to see who will come next. I could have read my entire book today but hesitated to stick my nose in a book while my husband twiddles his thumbs. We mostly talk quietly as we wait between each new person, trying to take everything in and understand. The doctor hasn’t given the diagnosis yet but everyone else seems to know he has ALS. The day is long. Each person we see moves us closer to the final visit with Dr. Bedlock, an expert in the field of ALS, and what we hope is a definitive diagnosis.
Would we hear what we dreaded? Or get a reprieve? Perhaps some miracle would occur. Please God, I pray.
“Why did this happen?” I ask softly, not expecting an answer.
We wait patiently. We swore in the car this morning that we would kick and scream for answers before we left today. “I think they’re wearing us down so we’ll be too tired to ask questions at the end,” I mumble, my arms raised high above my head as I stretch my shoulders and yawn. An afternoon nap curled on my sofa at home would be heavenly right now.
My husband laughs and agrees. “Do you have any snacks in your bag?”
He knows I’m practiced at hospital and doctor appointments and often carry a few cookies to help me through the day. But I’ve crunched through everything available on this day. “There’s a vending machine in the lobby. I’ll get you something,” I offer.
It’s after 5:00 when the doctor arrives back in our room and the shadows on the floor are gone. The day is growing dark and our questions have cooled. We’re slumped in our hard chairs with growling stomachs. Our heads are spinning. Is it still safe to drive? Does my husband need a chair in the shower? A walker? A power chair? Hand controls for the car? Other assistive devises? We’ve been given catalogs filled with products previously unimagined.
Dr. Bedlock is an interesting looking man, perhaps in his early forties, I would guess, but looking older and wiser, allowing a touch of gray to creep into his spiked hair. He is tall and slender and something about his shape is reminiscent of Kramer on Seinfeld, which is more reassuring than you might expect. He is dressed very retro in two toned shoes, short fitted slacks with a hint of burgundy in them. A narrow tie over striped shirt with a burgundy jacket completes the look. He carries a little black doctor’s bag and ignores me for the most part. But I like him and his willingness to speak freely of his impressions while he completes his exam.
“You likely have primary lateral sclerosis (PLS), although I can’t rule out ALS yet,” he says. “I want to track your progress.”
“PLS,” we both murmur, waiting for more explanation, which isn’t forthcoming. Much like sex education classes, direct questions are answered but not with a lot of added detail. More will be explained as necessary.
We know from research that PLS is a variant of ALS or a totally separate disease with a similar path but a slower attack pattern or maybe something else entirely. The scientists don’t claim to know. It’s even rarer than ALS and will eventually offer all the same delights but should progress much slower.
“We’ll know more in 3 to 5 years,” Dr. Bedlack assures us. Only later do we realize if the patient is still alive after that time, it’s assumed he doesn’t have true amyotrophic lateral sclerosis. We almost laugh at the irony.
We are resigned but hopeful. We no longer question, perhaps unwilling to hear there are no answers. We’ll learn the details first hand as we move through this journey, and slowly is certainly better. Perhaps my tough love will serve me well in the years ahead.
At home, we retreat to neutral corners, he in the basement pool hall and I to the bedroom, where the low whisper of the TV keeps me distracted as I putter around, preparing for a new tomorrow. We stay strong for one another by accepting our losses alone. We grieve the loss of good health, the freedom of youth, and the unlimited possibilities that existed just moments ago. Our life ahead has narrowed and some dreams have crumbled to dust.
I refuse to cry. If I do I’ll have to answer the hardest question of all. Who are the tears for – him or me?