Tag: caregiving

Being Thankful for the Gifts of Caregiving

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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.

Solace

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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

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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.

Questions and Mood Swings

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Photo by Evan Dennis on Unsplash

What follows is taken from my memoir, Watching for Dragonflies: A Caregiver’s Transformative Journey. I was learning how to be a caregiver for my husband, Michael, who experienced inexplicable mood swings as he wrestled with multiple sclerosis.  Perhaps other caregivers face similar situations and questions as they struggle to learn their new roles.

I’m surprised that Michael is often irritated and angry, most often with me. He is sometimes so angry that I’m afraid he will turn against me. I struggle to distinguish between what is acceptable and what is abusive. Because Michael has MS, am I supposed to take his verbal attacks in stride? People are always telling me to take care of myself or else I won’t be able to take care of Michael. Does “taking care of myself” mean drawing clearer boundaries and letting him know what actions I will not accept? What does “will not accept” mean? Would I ever leave him? How do I draw boundaries, and how do I enforce them? 

Sometimes I feel exploited and unappreciated. I wonder just what he expects me to do and what I should expect from him in return. Other times, I reproach myself for not loving unconditionally. I feel I need to be there for him no matter what, and that I’m supposed to do this selflessly. I often feel I’m at war with myself.

Being Michael’s caregiver is new for me, and being someone who needs care is new for Michael. I guess it’s going to take some time for us both to adjust to these new roles. Michael will need to give up some control—of his situation and of me—in order to let me do things for him that he can no longer do. I know this will be hard for him, but we will need to learn to work together if we are to meet the challenges of this disease. I hope we can.

And, eventually, we did.