Like Father, Like Husband

Photo by Laura Vinck on Unsplash

Growing Up

In the 1940s to mid-60s, my father grew nectarines, cherries, apricots, walnuts, corn, and tomatoes in Northern California. When I was a child, my bedroom window looked out on the nectarine trees, and I came to know and love the seasonal changes: the cyclical rhythm of dormancy, blossoming, and the bearing of fruit.              

My father was always busy at work, often sitting on his dust covered tractor with its pealing crimson paint, the four corners of a red bandana knotted to form a hat to protect his head from the sun and dust, a pack of Lucky Strikes in the left breast pocket of his sweat-stained blue work shirt. “Take me for a ride on the tractor,” I’d plead. Oh how I loved those rare times when he’d let me climb up on the toolbox to sit by his side and ride with him—just for a bit. For him that old tractor was all about work, but for me it was an alluring adventure and a brief glimpse into another world.

Sometimes on a summer afternoon, I’d climb into the passenger seat of his Ford pickup and ride with him into town. First might be a visit to the lumber yard for some wood and next a quick stop at Ranch Supply for a chat with his friend, the owner, and to pick up a bag of Purina Chow for my dog. Then across the railroad tracks to say “Hi” to my uncle and aunt who owned the local hardware store. Right next door was the ice creamery, so of course we had to stop there too. I don’t know who enjoyed those sundaes more, him or me. In the evening, after another of my mother’s delicious dinners, I would climb in the pickup again, this time with my dog, and off we’d go to check the water that irrigated the cherry orchard. I loved those warm evenings, the stillness of the land, and the soft gurgle of water as it filled the ditchers and replenished the soil.

Gifts From My Father

My father taught me many things, mostly by example. First there was love, no matter how far I stayed from who he thought I was or should be. He had been an athlete in college, so he shared his love of sports by building me a tennis backboard in one of the sheds and setting up a hoop for playing basketball. The value of companionship, too, was a lesson I learned from my father. He also taught me to value life, in all it’s many forms. For instance, he loved animals and encouraged my care of the many pets I had over the years of my childhood. His dedication to tending and nurturing the crops he raised was a testament to his love of nature and all living things, from soil to plants, animals, and people. He valued family and took my mother and me on many excursions to visit distant relatives. Above all, he cared for me with love and compassion, undeterred by the stumbles and many bad decisions I made growing up and in appreciation of my triumphs, large and small.

There came a time when my strong, hard-working father could no longer put in the long hours that running a farm demanded. The long, pre-dawn times of drenching crops with deadly spray took its toll and neurological problems sapped his strength. Most often it was parathion in the tank, a vile, insidious stuff, now no longer in use. I can still remember the acrid, choking smell of the spray material that was stored in one of our white-washed sheds. I didn’t go in there often or for long: I was cautioned to stay out. 

Perhaps it was that stuff he sprayed with, or a combination of things, that led to his slowly creeping dementia. It became pronounced after a vascular problem required the amputation of one his legs. Never able to master walking with a prothesis, he became resigned to using a wheelchair. Sometimes his behavior was erratic and angry, so unlike the loving father he always had been. I remember one time when I, now an adult, came home for a visit. After one of his angry outbursts I said, “It’s all right, Daddy, you weren’t yourself.” Looking up at me, confused, he asked, “Who was I?”

When my father became ill, the tables were turned, now it was my turn to care for him. That took many forms: from handling the bills and assorted paperwork to spending quiet time, being together and sharing memories. The hardest part was called “spending down” when I paid for home health care for him until he qualified for Medical—as Medicaid is called in California—and he entered a nursing home. This was an unhappy time for us both, but I was one of the lucky ones, for a smile of recognition never failed to appear on his face when I visited. He passed away quietly in a hospital, his work done but his love enduring.

My Husband

My husband and I were an active couple. We loved to go on backpack and hiking adventures along the Stanislaus River and when we got into mountain biking we excelled – biking the many trails in the SF Bay Area where we lived and mastering the challenging Flume Trail above Lake Tahoe. 

All too soon those adventures came to an end when Michael was diagnosed with multiple sclerosis. His decline was gradual, from dragging one leg on our frequent hikes to becoming wheelchair bound. 

My husband hadn’t always been sympathetic to my father’s condition, but as time went on, the similarities between my father’s condition and Michael’s became apparent to us. While we were visiting my parents at their house one day, my father came back from the grocery store and, embarrassed and discouraged, told us he had fallen down in the aisle. Michael had seen my father maneuver around his own house very well, and later Michael confided in me that he didn’t believe my father had fallen in the store. Now, years later and dependent on his hiking poles, Michael has fallen down many times and is afraid he might seriously hurt himself. Now he tells me that he knows there’s a big difference between getting around familiar surroundings and trying to maneuver in public places. “I wish I had gotten to know Bob better,” he says, referring to my father. “I understand what he was going through.” Situations like this have taught my husband compassion, for others and, more and more, for himself.

Also, like my father, my husband’s memory and cognitive function declined. At first it was paperwork that I took on, filling out disability forms and paying the bills, but soon I had to become his second memory, recounting his symptoms and remembering instructions when we went to our many doctor’s appointments. The hardest part for me to watch was the memory test that a doctor had to administer for Michael to qualify for disability status. At the beginning of the exam, the doctor gave Michael three items to remember. At the end of the exam, Michael could remember only two. I squirmed inside as I watched him grope for the answer and, finally, realize that he just couldn’t remember.

Over the 10 years that Michael suffered from MS, up until his untimely death, he was in and out of the hospital many times. Often experiencing hallucinations and memory loss. In one instance he asked me many questions, trying to find out what’s acceptable behavior in this strange new world he found himself in. On one occasion he asked me, “Is it all right to talk to the nurses? Is it all right to ask them to do things for me?

“Yes, of course,” I reassure him.

“Is it all right to ask one to get in bed with me?” This question was asked seriously, in the same innocent voice.

“No,” I had to inform him, and I tried not to laugh. He nodded, calmly absorbing this important information. He really didn’t know what was acceptable behavior and what wasn’t.

About this time, I discovered that he was concerned about the welfare of the people caring for him. Referring to a nurse’s aide who has just left the room, he ask me, “Is she from a country the US exploits?”

“I don’t know. Why do you ask?”

“Because if she comes from an exploited country,” he explained, “she might be angry and take it out on me.” I see his real concern and, suppressing a smile, I assure him she wouldn’t, which he seems to accept. In fact, he seems to accept all of my answers, as if I’m the most knowledgeable person in the world. He even tells me I’m very smart. He seems to be completely devoid of social memory, and, apparently, he sees me as the person who can enlighten him.

A little later, out of the blue, he asks me if mentally retarded people are taken care of; he’s concerned they might be left to fend for themselves. Another time, he asks if we’re free.

“What do you mean?”

“Can we go wherever we want? Can we do whatever we want to do?”

“Pretty much.”

“Do we have to work?”

“Yes.”

“Then we aren’t really free,” he concludes.

I have to admit that I guess we aren’t. He nods sagaciously, taking this in.

Lessons Learned

Among the many lessons I learned from my father was how to become his caregiver, and during the years my husband had MS, my caregiving tasks increased a hundred-fold. Besides becoming his back-up memory, I learned to accomplish many tasks I never thought possible, like changing a Foley catheter while maintaining a sterile environment and administering IV medications. Throughout it all, the most important lesson for me was learning compassion, for without that I would have been doing things for my father and my husband, but not truly caring for them.                                                                                                                                                

Perhaps I was destined to become caregiver; perhaps we all are as those we love need care. At any rate, I’m glad I was there for my father and my husband, and that they, too, where there for me. My hope now is that my story might bring inspiration and companionship to other caregivers as they find their way on their own caregiving journeys.

Being Thankful for the Gifts of Caregiving

Photo by Priscilla Du Preez 🇨🇦 on Unsplash

My time of caregiving for my husband throughout his years of living with MS included its share of stress and struggle, yet caregiving also brought many gifts. I discovered hidden internal resources and developed new skills that stretched my understanding of what I could do.

Through embracing the challenges of caregiving, I learned to trust myself to do what had to be done to care for my husband, Michael, despite my self-doubt and lack of experience. For example, in the latter stages of Michael’s disease, I learned to accomplish procedures that only an RN could comfortably do, such as administering IV medications and changing his Foley catheters while maintaining a sterile environment. As his condition worsened, Michael came to trust me more and more, and I was able to ensure that he received the right medical care and the right follow-up—from me.

Though I developed new confidence in myself and in my ability to meet the challenges of caregiving, I was not immune to making mistakes. Fortunately, I was able to take my mistakes in stride, though not without regret, and I was able to learn from them. Over the years, by building upon past experiences, both positive and negative, I became more knowledgeable and able to respond appropriately to new challenges as they occurred. 

My compassion for Michael increased over my time as a caregiver as did my compassion for myself. As being his caregiver became more complicated and stressful, I hired a wonderful woman who helped me take care of Michael. I was able to recognize my need for help with understanding rather than guilt, and because I wanted the best for my husband. 

More than ever in my life, I turned to my dreams and spiritual practices for insight and direction, and they served me well. I paid careful attention to the archetypal figures that appeared in my dreams. On one occasion, I dreamt of a strange goddess. I saw a young woman who had been enchanted; eyes had appeared all over her head and in her long, dark hair. She was beautiful. I sensed that this dream was showing me that my awareness was increasing and that I was becoming more conscious of my nurturing feminine energy with the intuition and collaborative power it brings. Goddess figures offered me insight into the importance of power with as opposed to power over and guided me in working collaborative with Michael, paying attention to his fears and opinions as well as his needs. 

Powerful masculine figures in my dreams helped me develop the assertiveness to effectively deal with the medical system when it wasn’t working in Michael’s best interest. On one occasion, Michael was in the hospital with a recurrence of aspiration pneumonia, and after several days he still was not responding to treatment. I ask his doctor, Dr. Palmer, to confer with the doctor who, earlier that year, had successfully cured Michael of aspiration pneumonia. It seemed to me that the treatment that worked before might do so again. Dr. Palmer refused to contact this doctor, who was located in another hospital in the same system. When he switched Michael from IV antibiotics to the oral form, I knew he was doing this too soon. I expressed my concerns, but the doctor abruptly informed me that he knew best. End of discussion. Well, I knew differently. 

I had to find the assertiveness and faith in my own judgement to fire Dr. Palmer. It wasn’t easy for me to confront the doctor, but I felt compelled to do so. Fortunately, I was able to find another hospital doctor who was willing to take Michael’s case. He readily agreed to consult with the doctor who had treated Michael previously, and one of the first things he did was to put Michael back on IV antibiotics with a new combination of drugs. At last, I felt reassured and could relax in the belief that Michael was once again in good hands. 

In addition to dreams, other spiritual pursuits helped me become a better caregiver. For example, consulting the Medicine Cards brought me Native American wisdom, and my continuing involvement in Tibetan Buddhism helped sustain and direct me. As time went on, caregiving became a vehicle for my personal and spiritual growth that points the way for me still. 

It’s amazing how necessity can teach us new behaviors and foster a new belief in ourselves. With love as our guide and caring for a loved-one as our purpose, we can discover the many gifts of caregiving. I would love to know what gifts you are thankful for. Please leave a comment.