My wife Linda Bowen Wasicsko began this article before her death, and I have finally finished it. It is based on a series of workshops we developed and delivered together on caregiving and care receiving. It details her personal journey to become what she called a “therapeutic care receiver.” I believe this is a much-needed viewpoint, both in our profession and our society, because little is written about this perspective.
I have primary progressive multiple sclerosis (MS) that, over the course of 30 years, has slowly drained me of many physical abilities. However, as reparation of sorts, MS has taught me, among its bountiful lessons, how to be a therapeutic care receiver.
This article shares what my life, career and professional training as a counselor taught me about being a good care receiver. I offer it to my fellow counselors who are in the midst of dealing with the challenges of receiving care, as well as to my temporarily abled colleagues who, when their turn comes, will also want to be good care receivers.
Caregiving and care receiving
The literature, as well as our practice, is replete with information about caregiving. Being a caregiver, while fraught with challenges and generally undervalued by our society, is seen as noble, selfless and altruistic and, as many caregiving survivors attest, can provide some of the most rewarding and growth-producing experiences life can offer. But this isn’t the case for care receiving. Information regarding the care receiver’s viewpoint, let alone how to be good at it, is much harder to come by. Moreover, it should be no surprise to learn that the transformation from being a dispenser of empathy as a counselor to the target of others’ sympathies comes with ample challenges and stressors. But it is also accompanied by generous opportunities for growth.
As my MS progressed — slowly erasing my sight, my ability to walk and swallow, and then my practice — I became increasingly dependent on others for my care. I discovered, however, that my education and counseling experience gave me tools to stay engaged and positive and also to become the kind of care receiver who can still provide benefit to loved ones and caregivers.
Evolving to the point of becoming a therapeutic care receiver entailed being in a good place within myself about the inevitability of where I was heading. This was a corequisite for figuring out how to intentionally and continuously establish and maintain healthful and mutually sustaining relationships with my caregiver(s), family members and the public. Interestingly, becoming the care receiver I wanted to be, especially after having to cease my practice due to my increasing limitations, proved as challenging to me (and sometimes more challenging) as working with my most demanding clients.
If you can’t get out of it, get into it
Most of us chose counseling careers in order to help people grow and increase their level of happiness. There can hardly be a more satisfying feeling than when this happens. For people whose core dispositions and professional identity revolve around helping others, being on the receiving end of the stick is a difficult and painful pill to swallow. As I could perform fewer of my activities of daily living and had to rely on others for more and more of my care, I realized I could either rail against what is and slip into despair or find my worth and identity in new ways. I knew I had to learn to accept increasing amounts of care from others with grace and gratitude.
An old Chinese proverb says, “You cannot fully live until you come to grips with the fact that you will surely die.” Progressive degenerative diseases provide lessons in this fact that most people can temporarily ignore. For me, accepting the undeniable fact that both time and abilities have an expiration date ultimately led to a peaceful and hopeful view. This was not hope for a cure but the hope that comes from looking forward rather than backward; from taking stock of the good and positive things in life and never looking back at or regretting the things I no longer have or can no longer do. When my sight blurred, I found my listening became keener. When I could no longer walk, first a scooter and then a wheelchair served as my legs. When I developed dysphasia and could no longer eat by mouth, I relished in conversations that wafted across a dinner table surrounded by family and friends. And when my progressive disease required me to surrender the profession I loved, I found that being mindful, looking outside of myself and staying in the moment permitted me to experience great contentment.
Lessons from Buddhist monks
One of the toughest and most constant challenges I faced was dealing with the feeling of being a burden to others. I learned that Buddhist monks eat only food prepared for them by others. This is not so that they can spend their time in more “monkly” pursuits such as meditation or practicing compassion and humility. Rather, it is to provide people with the growth-enhancing privilege of taking care of others.
This made me realize that people deserve the opportunity to help others so they can experience the same emotional and spiritual benefits that counselors experience through our practice. I learned that permitting others to provide care for me can be a gift to them if done within a therapeutic relationship.
Be grateful for what you have
In our work, we encounter many people who are pining away their lives and wishing for things they do not have or once had but lost. Regrets weigh heavily not only on the soul but also on the ability to grow and be happy.
It is not uncommon for people with infirmities to become trapped in vicious cycles of loss and grief. As abilities erode, it is easy to lament or obsess over one loss only to find that, in the interim, the next ability has slipped away too. Moving forward in positive and therapeutic ways entails engaging in some grieving and then adapting to the changes by taking stock of what abilities remain and focusing on them.
Fortunately for me, a silver lining revealed itself from behind each dark cloud. When I could no longer run and play with my grandchildren, I could plop them on my lap and give them a ride on my scooter or wheelchair. They had a special grandmother who played with them in ways that many others couldn’t. When I could no longer schedule clients, people seemed to magically appear who needed an ear to listen to them and a mirror in which to reflect.
Don’t wait, do it now
Another major lesson was not to postpone important things. It is difficult to overcome the deeply ingrained hope that with time or by ignoring problems, things will get better on their own. With a large number of the bumps and bruises experienced throughout my life, that is exactly what happened. Sometimes life can be remarkably self-healing.
As incontinence began seeping into my daily existence, I caught myself avoiding going out because I feared not finding a restroom in time. I experienced the “boiling frog syndrome” in which the decrease in my social interactions was so gradual that I was unaware of the creep of undesirable consequences. I was slowly warming to a life — separated from family and friends, devoid of social events and most other life joys — that was the exact opposite of what I wanted. Risking the embarrassment of losing bladder control and strapping on Depends involved a difficult and agonizing decision and transition. Body transcendence, I realized, was much easier to understand as part of my academic preparation than it was to live with. To decouple my self-worth from my diminishing control of bodily functions required a lot of positive self-talk and external focus, as well as the gentle support and encouragement of others.
A second example occurred a few years later as I moved into the paraplegic stage. Here again, I found my old desire to “wait for things to heal themselves” was strong. In addition to dealing with the loss of my ability to walk, I worried about people feeling sorry for me or that I would become one of the invisible handicapped who are no longer the recipients of direct eye contact, only sideways glances. Luckily, I discovered that I could still be myself, albeit with mechanical help, and that friends and strangers alike could still see me.
To help counteract a developing agoraphobic mindset, I started using a scooter and later an electric wheelchair for shopping and visiting friends. To my pleasant surprise, I found that it opened new lines of communication with people I encountered. One day, while cruising through a department store, a preschooler slipped away from his mother’s grasp and ran up to me grinning. He was completely fascinated with my means of travel.
“Wow, that is a neat car!” he said. “Why do you get to ride it?”
“Because my legs don’t work well,” I explained.
“Oh, I hope my legs don’t work someday so I can ride one too!”
This led to a wonderful conversation and impromptu counseling session with the little fellow’s mother about the challenges of raising preschoolers. Ironically, I found that my challenge with mobility proved a catalyst for me to do storefront counseling.
Start a gratefulness project
When confronted with mounting challenges, it is hard to avoid slipping into a despairing, woe-is-me mindset. Positive psychology posits, however, that we can increase our general level of happiness with a few simple practices each day:
- Count your blessings rather than your sorrows.
- Always express gratitude.
- Keep in mind that many others have it worse than you.
I started each day by mentally listing things to look forward to and ended with a review of the day’s positive happenings. I became mindful to notice and acknowledge all the good, kind and helpful things that happened during my day and made an extra effort to express my gratitude for each event to the person(s) involved.
The third leg of my positive psych stool involved avoiding the pity-party mentality. I did this by reminding myself of the good and positive people in my life and remembering that others have to make it with far fewer resources than I possess.
Give the gift of listening
Some people are always surrounded by friends and family, while other people are avoided like the plague. The shunned tend to be egocentric and negative, spending much of their time miserating — my back hurts, I haven’t had a bowel movement in days, no one ever listens to me.
Those embraced by others tend to ask questions, show interest and focus most of their attention not on their own difficulties but on the lives and issues of others. Intuitively, they employ the skills we were taught to use with our clients — the same active-listening skills I used to be a therapeutic care receiver. I would ask people about their day, their issues and their problems. I added value to these relationships by using my skills to help them gain perspective, just as I had in the past with my clients.
The personal gains were significant too. I continued contributing to the well-being of others and received better care in return. Also, I always knew more about what was going on in people’s lives than anyone else!
Insist that the load be shared
For me, the toughest things about needing care were the loss of privacy and the resulting dependence on others for the most intimate activities of daily living. Losing control of basic bodily functions triggered tremendous modesty and self-consciousness issues. The unintended but inevitable consequence of this was to become overly dependent on a single caregiver. How many people do you want dressing you, changing your Depends or feeding you through a tube? However, to be a therapeutic care receiver (and for the sake of the primary caregiver), I had to permit and even encourage numerous others to provide this care.
Two strategies helped me deal with these issues:
1) Engaging the caregivers in meaningful conversations about their lives while they were dealing with my most intimate activities — in essence, supplying them with a counselor’s ear as they provided me with personal care.
2) Seeing my challenges as teaching tools through which others might learn.
Even my granddaughter, then 7 years old, could be a care provider. She took great pride and pleasure in feeding me my liquid lunch of Ensure. If she had her way, I would have been fed hourly throughout her visits.
I want you to stay, but you need to go now
There is a good reason why flight attendants say, “Always put on your oxygen mask before helping others.” If the plane loses cabin pressure and you fall into unconsciousness, you can be of no help to others.
Caregiving is the same way. For the sake of both parties, caregivers need to maintain their health — physical, emotional, spiritual — if they are to provide care and not succumb to the negative side effects that are all too common. Caregivers, especially if they are family members and loved ones, need to be given permission or even prodded to take the time needed to attend to their own health.
Caregivers can feel guilt that they are not having to endure the same trials and tribulations that a loved one is going through. They may also experience guilt when they need respite time to recharge themselves, feeling — at least temporarily — “unresponsible.”
My primary caregiver (my husband) was like that. As the therapeutic care receiver, I had to insist that he have a regular and predictable routine. He needed to know of and look forward to times of being away and taking care of himself, just as much as I needed to know of and look forward to his return. This is one of those life paradoxes: Pushing caregivers away to take the necessary time to recharge themselves allows them to return and provide better care. It also builds a more therapeutic relationship.
A last lecture
Through his excellent book and video The Last Lecture, Randy Pausch attempts to help his family through the trials of his impending death and the aftermath. While knowing there is no way around the pain, grief and hardships that accompany the loss of a loved one, he sets in motion a series of actions that can potentially facilitate the process. This serves two beneficial purposes. First, it helps survivors through an anticipatory grief process by gradually helping them move beyond denial and to an acceptance of the inevitable. Second, it can help relieve some of the stresses on survivors to make too many decisions on very weighty topics.
One of the most convenient and practical ways the therapeutic care receiver does this is by making as many estate decisions as possible and openly talking about them with loved ones. On my list: a living will that included potential organ donations; a “do not resuscitate” order; and funeral wishes not to have a formal ceremony (I never liked being the center of attention in life, so I sure wouldn’t want it when dead!). I requested cremation with my ashes spread in the mountains of my birth. Rather than flowers or cards, I asked people to spend a few moments with loved ones or commit an act of kindness in my memory. I also gave instructions for what to do with my personal belongings.
I tried to communicate these wishes explicitly and often enough without seeming morbid or intentionally bringing people down. The personal benefit of helping my family work through these issues helped me to gain acceptance and peace as well.
On becoming a therapeutic care receiver
When I first decided to apply the skills I had acquired through helping others to myself, I realized the kind of care receiving I wanted couldn’t be a one-way street. Good care receiving, like most therapeutic practice, involves a system of engaging in mutually beneficial relationships in which all parties are concerned with and have responsibilities for the well-being of the others. The ability of all participants in the enterprise to thrive rather than merely survive is just as much the responsibility of the care receiver as the caregiver.
My journey to becoming a therapeutic care receiver provided so many unimagined benefits:
- It allowed me to maintain my dignity.
- It fulfilled my need for a helping purpose.
- It facilitated my body and ego transcendence.
- Of most importance to me, it permitted me to be an active, value-adding participant in the lives of the people I loved most.
To my fellow counselors, I offer you these thoughts and insights for when your turn comes, as it does for us all. Becoming a therapeutic care receiver may provide you with the most challenging client you will ever encounter, but the benefits are better than gold.
Epilogue by Mark Wasicsko and family
Linda died at home in the arms of loved ones. We believe one of the reasons she stayed as long as she did, way beyond what medical science predicted, was because she wanted to provide us with as much anticipatory grief counseling as possible. Even as she struggled with ever-increasing physical and medical challenges, she remained positive, upbeat and “other centered.” Through the way she lived her life, she taught us much about dignity, patience and compassion. And she did the same for a large and extended family of daughters, grandchildren, friends and clients. Her family and friends can attest to her success at being a therapeutic care receiver. She lived a beautiful life.
Having the privilege of being beside her through her struggles taught us that happiness is all about the people in our lives and focusing on the positives. It’s about doing what you can, not wishing you had more or regretting what was or might have been. One of the greatest lessons Linda taught us is that “living happily ever after” is done one day — and even one moment — at a time.
As she was so fond of saying, “Happiness is a choice, so why not choose to be happy?”
American Counseling Association member M. Mark Wasicsko is professor and Bank of Kentucky Endowed Chair in Education at Northern Kentucky University. Contact him at firstname.lastname@example.org.
Letters to the editor: email@example.com
This is such an important story for all of us. Having a positive outlook to come back to after we hit a tough spot is important to not only our own health and well being but those around us as well. My husband who is 59 has Alzheimer’s, he can not longer walk and is mostly confined to bed, he can’t help himself in any way and he is limited to the occasional word but his sense of humour continues. He is grateful for his care, he can’t complain but we can tell by his radiant smile and tiny laugh that he is happy.