Rehab

When my husband, Michael, was confined to a wheelchair, for seven days he was immersed in a rigorous program of physical therapy, occupational therapy, speech therapy, and group therapy led by a licensed clinical social worker. All this happened when he qualified for treatment in our HMO’s rehabilitation facility. He had a written schedule that hung in a plastic sleeve from his wheelchair, and he was responsible for being at the right place at the right time. He had the benefit of excellent medical staff, who carefully selected and tracked his programs and therapies, and his admitting doctor oversaw his treatment and progress. Although he had a regular hospital bed in a four-man ward, he was rarely in it except to sleep at night and, sometimes, to rest for a couple of hours in the afternoon. He took his meals in a group room and participated in the activities and movies that were provided for patients during their free time. I was able to visit him whenever I wanted, but because the facility was quite a distance from home, I didn’t come every day. I was able to take some time off for myself, secure in knowing that he was well taken care of.

            Michael got more cheerful while he was there. The hospital was laid out to accommodate wheelchairs, and the wide hallways made it easy for him to wheel around to the various rooms. 

            “I thought I was getting better,” he told me when I visited one day. “But the doctor tells me my MS isn’t disappearing. It’s just easier for me here. Everything’s laid out for a wheelchair, and I have all kinds of support.”

            He did make progress, however, and as his functioning improved, he saw new possibilities opening up for him. His balance and walking got better. He became independent in upper-body dressing, only needing help with pants, socks, and shoes, and his confidence improved. Physical therapy increased his strength and range of motion, and when he came home, he had an exercise program designed to maintain his gains. 

            Two caring women in the occupational therapy department got Michael approved for a customized, electric power chair. It had mid-wheel drive, which made it highly maneuverable, and Michael loved it. When he took it out for a test drive in the parking lot and garage, he put it through its paces. The chair passed the test and, thanks in large part to Medicare (which Michael had received early due to his disability status), he was finally outfitted with what he needed.  

            While I was visiting him one day, the physical therapist asked Michael if he would like to stand up. “You bet!” he said. So, the physical therapist strapped Michael onto a standing board. This device gradually raised him from a prone position to almost 90 degrees. 

            The first thing he said when he was “standing” was “I want to hug my wife.” 

I moved close and embraced him, and he put his arms around me. It was the first time we had held each other this way in years. I was a little self-conscious being in a room full of people but feeling the full length of his body against mine was sublime. I closed my eyes, rested my head on his chest, and savored the moment. We held each other until the therapist came to crank Michael down.

            I highly recommend checking out rehab possibilities if your loved-one qualifies. For Michael, it was definitely time well spent.

Solace

photo by Simon Migaj on Unsplash

These are times when much is taken away. As caregivers we are all too familiar with loss, and now is an especially difficult time. I’d like to share an essay written by the Irish-English poet, David Whyte, that speaks to loss and to solace.  

Solace is the art of asking the beautiful question, of ourselves, of our world or of one another, often in fiercely difficult and un-beautiful moments. Solace is what we must look for when the mind cannot bear the pain, the loss or the suffering that eventually touches every life and every endeavor; when longing does not come to fruition in a form we can recognize, when people we know and love disappear, when hope must take a different form than the one we have shaped for it.

Solace is the spacious, imaginative home we make where disappointment goes to be welcomed and rehabilitated. When life does not in any way add up, we must turn to the part of us that has never wanted a life of simple calculation. 

Solace is found in allowing the body’s innate foundational wisdom to come to the fore, a part of us that already knows it is mortal and must take its leave like everything else, and leads us, when the mind cannot bear what it is seeing or hearing, to the birdsong in the tree above our heads, even as we are being told of a death, each note an essence of morning and of mourning; of the current of a life moving on, but somehow, also, and most beautifully, carrying, bearing, and even celebrating the life we have just lost. – A life we could not see or appreciate until it was taken from us –

To be consoled is to be invited onto the terrible ground of beauty upon which our inevitable disappearance stands, to a voice that does not soothe falsely, but touches the epicenter of our pain or articulates the essence of our loss, and then emancipates us into the privilege of both life and death as an equal birthright.

Solace is not an evasion, nor a cure for our suffering, nor a made up state of mind. Solace is a direct seeing and participation; a celebration of the beautiful coming and going, appearance and disappearance of which we have always been a part. Solace is not meant to be an answer, but an invitation, through the door of pain and difficulty, to the depth of suffering and simultaneous beauty in the world that the strategic mind by itself cannot grasp nor make sense of. 

To look for solace is to learn to ask fiercer and more exquisitely pointed questions, questions that reshape our identities and our bodies and our relation to others. Standing in loss but not overwhelmed by it, we become useful and generous and compassionate and even more amusing companions for others. But solace also asks us very direct and forceful questions. Firstly, how will you bear the inevitable loss that will accompany you? And how will you endure it through the years? And above all, how will you shape a life equal to and as beautiful and as astonishing as a world that can birth you, bring you into the light and then just as you were beginning to understand it, take you away?

More from David Whyte can be found at https://www.davidwhyte.com.

Our Needs as Loved-One and Caregiver

Abraham Maslow’s Hierarchy of Needs

I remember when my therapist reminded me that my husband was in survival. She was referring to the most basic of human needs as defined by Abraham Maslow in his Hierarchy of Needs

I had been complaining that my husband no longer seemed interested in the things that usually drew us together—like reading and discussing new books or exploring new concepts. Increasingly, I was feeling alone and disconnected from my husband. 

Abraham Maslow was an American psychologist who theorized that humans have five basic categories of needs: physiological, safety, love/belonging, esteem, and self-actualization. Though controversial, his elucidation of needs rings true in many ways and, as a caregiver, I found them helpful.

When my therapist spoke of my husband being in survival, she was referring to the basic physiological needs, such as breathing, food, water, sleep, sex and the maintenance of consistent levels of these essentials. Suffering from MS, my husband was not at all confident that these needs were or would be met. He could no longer work and was becoming increasingly dependent on me. Even sex was problematic.

Where once he had felt safe and secure, his second basic need—safety—was no longer assured. His body was changing, and his health was deteriorating. Working was out of the question now, and our financial resources were being stretched. He didn’t feel safe at all.

Though he felt my love and we had a strong sense of belonging together, his social connections were becoming increasingly limited as friends fell away and his mobility issues limited where he could go and what he could do. He no longer belonged to his work community and his involvement in the larger community was diminishing.

His self-esteem was on a downward trajectory. He was losing confidence in himself now that he could no longer work. This led to a lowering of self-respect, and he wondered if others respected him as much as they once had now that he was becoming “different.” 

In terms of self-actualization, it was becoming more and more difficult for him to accept the facts of his drastically changing situation. He wondered who he was now and who he would become. Fortunately, he nourished his creative side through drawing and painting in his journals and taking photographs that he enjoyed editing on his computer. Here he could be imaginative and spontaneous. This gave him relief from his worries and a growing avenue for self-actualization. Creativity was a wonderful coping strategy that helped him relieve stress and live in the moment. It was both satisfying and empowering.

Meeting these needs, as outlined by Maslow, is linked to our sense of well-being. When they are not met, our sense of well-being diminishes. Add this to the physical pain and limitations of disability, and it was no wonder that my husband and I were sometimes out of sync. 

My challenge was to continue nourishing my own self-esteem and growth in self-actualization while recognizing that often my husband would be preoccupied with much more basic needs. With this knowledge, I became more compassionate when he was anxious and moody, and I appreciated and encouraged his creative pursuits. I also found that being a caregiver helped me to meet my own higher needs as identified by Maslow. While my psysiological and safety needs were well enough met—or else I would not have been able to do all that I did for my husband—caring for him brought us closer together in love and belonging. As I grew more as a caregiver, I grew in confidence and achievement, and this increased my self-esteem. For me, caregiving became a new way of self-actualization as I became creative in my role as a caregiver, learning to solve new problems and accepting the facts as they emerged while finding ever new ways to live fully in the moment.