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.
Often when we think of love, we focus on our love for others. Especially, if we are a caregiver, we focus on our love for the person for whom we are caring. Yet, how much more love we have to give if we remember to love ourselves, too. I don’t mean we should have a narcissistic love where we put ourselves and our needs above all else. I do mean that we would be a better caregiver, and a better person, if we remembered to love ourselves, to show compassion for ourselves.
The ancient Greeks spoke of several types of love. One was philautia, or love of the self. According to Roman Krznaric, in his article in the December 2013 edition of Yes!magazine: “The idea was that if you like yourself and feel secure in yourself, you will have plenty of love to give others (as is reflected in the Buddhist-inspired concept of “self-compassion”). Or, as Aristotle put it, “All friendly feelings for others are an extension of a man’s feelings for himself.””
I know in caregiving for my husband, Michael, I often felt guilty if I took time to show myself some self-love. Gradually, however, I found that when I did, I had more love and energy to give to Michael. Some of what I did was just small stuff. For example, during Michael’s frequent stays in the hospital, when I could take a break from being at his bedside, I would go to the cafeteria and relax with a latté. My decaf, soy latté became my reward. I might have only ten or fifteen minutes for myself, but those few minutes were enough to recharge my batteries.
Occasionally when Michael was able to be home alone, I would spend time with a friend, going to a movie or taking a walk. Sure, Michael felt some resentment, but he came to realize that these times were important to me and beneficial to him, too. Gradually, I learned not to feel guilty for these taking-care-of-myself times. I always made sure he was covered and that he could reach me by phone at any time. That freed me to have some time for myself.
I believe love and compassion aren’t just for others, they’re for ourselves, too. We do our due diligence as a caregiver; we need to be a care-receiver, too.
I was in a MS Society support group for people with loved ones diagnosed with MS. One of the things we learned was how important it is for spouses to have a plan for their long-term care. Because our spouses may not be there for us when we’ll need care, we must look to the future and be sure we’ll have the support we may need.
My focus was so fine-tuned on my husband’s needs, I would never have thought of this on my own. But I realized I needed to be compassionate for myself as well as for my husband. Overcoming my aversion to even considering that he might die and leave me alone, I decided to heed the advice we’d been given. I was fortunate that I was able to take out long-term care insurance early on, before it became prohibitively expensive. My policy provides for in-home care as well as assisted living and nursing home coverage. Today, however, these insurance companies are having difficulty making a profit and some have left the market. Qualifying for care is a problem, also, if you have an existing medical condition. Still, it may be worth investigating this option.
But long-term care insurance is not the only way to pay for your future care. Below are some other options.
Pay with Your Own Funds. This is what most people do, at least for as long as funds last. If you can set aside a substantial amount of money for this every month, you may be able to pay as you go, at least for a while. Yet, as you may already know if you’ve researched care options for your spouse, private care can be very expensive, often more than $26/hour. Assisted living facilities can run between $2,800 to $4,500 a month or more. Skilled nursing facilities are even more expensive, averaging around $8,000 a month. If you’re paying with your own funds, you’d probably run out of money before then.
When my father was disabled, I had to spend down his money in order to give him the care he needed. That led me to enroll him in the next option as a last resort.
Medicaid or, in California, Medi-Cal. This is a joint federal and state program that helps with medical costs for people with limited income. Unlike Medicare, it pays for nursing home care and personal services. It will not pay for the costs of assisted living facilities. Limited funds are available for in-home care. It’s a complicated procedure to qualify for Medicare or Medi-Cal, but in the end, it may be your best choice. If you think you may need this, start keeping track of your care expenditures early. More information on that can be found at https://www.medicaid.govand https://www.coveredca.com/medi-cal/
Whatever you do, remember to have compassion for yourself as well as for your loved-one. Often, we’re so absorbed in being a caregiver that we forget to care for ourselves. Please don’t let that happen.
“We work on ourselves in order to help others, but also we help others in order to work on ourselves.”
I remember the moment I realized I was going to be my husband’s caregiver forever. I knew Michael had multiple sclerosis, and I knew this would be a progressive disease. Yet, knowing something and realizing something proved to be quite different.
I’ve always been drawn to the cognitive—to learning and understanding. So in the beginning I set out to gain knowledge, believing that with knowledge comes power. I read books and articles on MS, attended lectures with Michael, and more. I learned a lot. But that wasn’t enough. As the realization hit, I found myself entering an emotional darkness, as if I’d fallen into quicksand and didn’t have the energy to get out. Our dreams for the future were disappearing, and nothing we could do would bring them back. Oh my God, I thought. What’s happening to our life? What’s happening to my husband, to me?
According to Carl Jung, “There can be no transforming of darkness into light and of apathy into movement without emotion.” For me to make this change—to move from the darkness of despair into light—I had to accept and respond appropriately to my new challenge. I had to make the transformation from being Michael’s wife to being his caregiver, too.
This meant I had to bring compassion to our new situation. If I could feel and maintain compassion for Michael in his suffering, and for myself, I would be able to succeed.
The physical and logistical tasks of caregiving are vital, but to perform these well I had to have compassion. Without it, in all the day-to-day tasks I would be doing for my husband, but not caring for him.
The key to caring is compassion; yet, showing compassion for Michael was not always easy.
For example, from the beginning Michael tried to do things himself and only wanted my assistance when a task, such as sliding on his pants while sitting on the bed, proved to be impossible. So, I learned to wait for him to ask for my help. (“What if you weren’t here?” he would say.) This worked fine, until that time he was trying to transfer to our newly installed stair lift. He struggled over and over, moaning and groaning in frustration, trying so hard to make the switch. Dutifully, I stood aside, waiting to help. Until he exploded: “Don’t just stand there staring at me! Go away! Get out of my sight!”
Not only did I leave, but I broke into tears, feeling unjustly accused and unloved. That time, for a while, my hurt feelings won out over compassion.
Still, most of the time, such as when I assisted Michael in all the challenges of daily living, or accompanied him to the doctor and served as his backup memory, or as we quietly shared our thoughts and feelings, not only did my compassion serve us well, but Michael, too, began to develop compassion, for me, for others, and for himself.
So, just what is compassion? According to Merriam-Webster, Compassion is a “sympathetic consciousness of others’ distress together with a desire to alleviate it.” Well, that’s what it is, but how do we develop it? Maintain it? How do we feel it in our hearts?
In my case, I found it through Tibetan Buddhist practices. Before Michael was ill, he and I were part of a sangha, or community, where we learned and practiced meditation. One time as I was meditating on a very large tangka or pictorial representation of Padmasambhava (who brought Buddhism to Tibet from India in the 8th century), I saw a diffused white light emanating from his body into mine. At the same time, I felt a wonderful warmth in my heart as if I were receiving love directly from him. The thought, That’s compassion, immediately entered my mind. It was a very real, visceral experience.
We may not all be so lucky as I was to have such an experience. It did not mean I became a compassionate person over night and for always. What it did was give me an experience that inspired me to develop and act from compassion as well as a deep, inward sense of what compassion is.
I’m sure there are many and varied spiritual practices that teach compassion. I encourage you to seek out one that speaks to you. We are all able to feel compassion and to act from that space.
I’d like to share with you a Tibetan practice I learned for developing compassion. It’s called Tonglen. One does this alone and in silence. It has to do with intention and the breath. Rather than describe the practice, I would like to offer you a video with Pema Chödrön.
I have found her books and teaching on many topics especially helpful. (Please see the link in the Resources section.)
I would love to hear your thoughts in response to this post. I feel that by authentically sharing our experiences with others who are in situations similar to our own we are performing a compassionate act—one that can help others feel connected rather than alone, one that can open doors to growth and liberation from suffering.