I've attempted to explain the difficult nature of the caregiving lifestyle to a handful of individuals on the outside. Last night I firmly told one of my son's Scout leaders that expecting me to attend the Blue and Gold Banquet next Tuesday during "me" time was simply out of the question, and that I would remain strictly defensive of the time slot regardless of pressure to support my son by being present for the award of his most recent merit badges. This leader left assuring me that he understood, but his alarm was unmistakeable. I had told him that while I viewed LDS Church activities for family as providing excellent opportunity for wholesome outlet, these activities tend to crowd into our family's life and complicate the delicate balance we are struggling to establish in the face of severe situational re-landscaping. For every call given by LDS Church leaders to simplify family life, there are enough religious programs, award systems, and enrichment activities to choke the possibility of simply breathing.
This is what I'm talking about.
This is what I'm talking about.
My hardest days are the ones where I wake full of energy, ideas, and a headful of plans. By 3 p.m. the energy is depleted, the ideas a dull mud pie in the back of my mind, the plans surrendered in exchange for twenty minute catnaps before the second shift of my sixteen hour days.
Monday morning I woke an hour and a half before my husband, got my son ready and off to school, took out the garbage, started a load of laundry, set out Mr. PNU's clothes for the day, set out mine, and dressed for the gym. Annie, our personal care assistant, comes Monday, Wednesday, and Friday to help with Mr. PNU's shower, dressing, hygiene, and breakfast. This gives me an hour and a half of free time three days a week to exercise, shower, and prepare for the day. The other four days of the week I take responsibility for my husband's basic needs, or ADL—activities of daily living. Our Annie-days also feature noon physical therapy. I must pack or plan for our lunches, and at 11 a.m., once I've showered and dressed, I load Mr. PNU into the car and drive the thirty-five miles to Sandy for his tri-weekly appointments. The commute takes 45 minutes. We arrive with 15 minutes for car-to-wheelchair transfer and bathroom needs. Today I stopped to get a cup of decaf for myself and a post-cholecystectomy donut for my husband; his first since the surgery. Our therapy sessions generally last an hour and a half, and by conclusion Mr. PNU is spent. There are four wheelchair/car transfers in the coming and going to Neuroworx. Some days I stay with him the duration of his session. Others, I rest in the family waiting area. Mondays, on the way home, we stop in at the medical clinic for our weekly INR to test blood clotting time. On Fridays we go straight to the Pie Tin to participate in a weekly behavioral science think-tank with Dr. Matthew Draper. By 4 p.m. we're home, I'm starting evening meal prep, and Mr. PNU is reading. Our children come and go. There is homework, church activities, social engagements, parenting, and general household minutia to attend.
We eat. I tidy up, throw another load of laundry into washer and, or dryer, take care of my husband's toileting needs, and occasionally crack open a book, or find a film on Netflix. Usually, by 8:30 p.m. Mr. PNU is winding down. He reads for hours in his chair, and for another hour or so once I help him into bed. I give him his handful of evening meds, and he reads Lord of the Rings aloud to B— for half an hour. By then both son and husband are ready to sleep. At nine we listen to B—'s prayers. I tuck my son into his bed, prep Mr. PNU's CPAP, and kiss them both goodnight. For an hour, sometimes two, I lay in bed and wait for the day's bustle and exhaustion to seep out of my bones, and for sleep to slip in to take its place. The alarm is always set, and as long as my husband sleeps soundly I do too. But Mr. PNU rarely sleeps through the night without knocking the CPAP mask loose, needing the urinal, waking to an aching back or a spasm in his affected leg and arm. I am almost always awake at 4 a.m. for one reason or another.
Tuesdays and Thursdays I rise at 7 a.m., get B— up for early morning choir, and move laundry along. I do my best to prep for the day, breakfast, setting out Mr. PNU's clothes and mine, before I wake him at 9 a.m. I feed him breakfast and give him his handful of morning meds. We shower together, a process that takes on average an hour and a half to get into the bathroom, undressed and in the shower, his neck shaved and beard trimmed, both of us cleaned and shampooed, dried and dressed, combed, deodorized and teeth brushed. By 11 a.m. we are in the car on our way to the Pie Tin, where this past week we lectured together for an hour and fifteen minutes on virtue ethics to his class of twenty-five university students. When Mr. PNU's colleague is not overseas working on peace-keeping efforts, they share lectures. The husband/wife teaching dynamic is a different flavor than philosopher/philosopher teaching. I think eventually he and I can fine tune the former to the point that I will be able to effectively provide the support necessary for my husband to continue carrying a course or two of his own per a semester as long as I mind organization of syllabus and take charge of the grading. At 1 p.m. we have lunch at the cafe counter in the Pie Tin library and then swing up to the philosophy department to socialize with whomever might be available in office until 3 p.m. On Thursdays we drive back into Provo for an hour of talk therapy before heading home. Car-wheelchair. Wheelchair-car. Each transfer means lifting the sixty pound chair in and out of the back of our Kia. Each transfer is a juggle of bags, equipment, human limb, a here-we-go-round-the-vehicle game. Dance-like. Choreographed. Muscle, joint. Balance and heft. Our act certainly must look easy by now, well rehearsed. We get curious looks from passersby where at first we got offers of help. I got the routine under my belt by politely turning them down.
What I haven't detailed are the doctor's appointments, which invariably crop up to fill any downtime that seems to exist on the calendar at the beginning of each week. Surgeons, neurologists, GPs, endocrinologists, urologists, hematologists, lab work, etc. There are phone calls to providers for appointments, and to billing representatives to managed account balances. There is discussion of course materials and how I can better help my husband in the classroom. There is housework, car upkeep, bills to pay. My Christmas tree and decorations are still on display, gathering dust, displaying the dust they gather. I think about packing it all back into boxes and into our shed, but by the time I have time my energy is spent. At 6 p.m. on Tuesdays, Abby comes to sit with Mr. PNU while I go out until 8. On Thursdays, Muchan comes from 7-9 p.m. On Saturdays, Muchan comes for a five hour respite period from 11 a.m.-4 p.m. I try to squeeze all the reading, writing, shopping, children, socializing, and rejuvenation I can from these nine hours. On Saturday evenings my husband and I go out on the town, visit the Temple, or simply prepare for the Sabbath by laying in bed side-by side, exhausted, thankful that God has given us another day, and that there will be more days to work through beyond the coming day of worship,. And once our Sunday meetings have concluded, sacramental covenants renewed, and spirit rekindled, I am altogether grateful that salvation is not dependent on avid, eager participation in Boy Scouts of America, and that by the grace of God I am somehow making it, week by week.