By Stuart Smith.
I have been a caregiver for my wife, Ellen, for the past ten years of our 44 years of marriage. Ellen braves two distinct and incurable conditions: Ehlers-Danlos Syndrome and sarcoidosis. There have been times, over the last decade, when the impact of Ellen’s symptoms has proven incredibly painful and temporarily disabling. My wife has faced the possibility of an untimely death or spending her life in a wheelchair. While a cure for either of her medical conditions appears unlikely in our lifetime, medical science has ameliorated some of the more severe symptoms of both conditions, allowing Ellen to more comfortably adapt to her new physical limitations. Dramatically altering previously sought-after goals and activities has enabled Ellen to find new meaning and purpose—so critical when building a hopeful perspective on life. Ellen is alive, vibrant, mobile and more importantly, looking to the future with a positive attitude.
Looking back over the last ten years, which has included 24 surgeries—many out-of-state—and often stressful recoveries, I’ve come to realize that the greatest challenge for me and perhaps any individual caring for a loved one with chronic, incurable conditions, is managing one’s fear of the future. While we all may have fears of a future not known, for the medically complex patient population, this fear can be particularly acute and often demanding; combatting such trepidation necessitates considerable psychologic and physical energy. The primary challenge to those caring for loved ones may be in not allowing their own fears and anxieties to overwhelm them and become debilitating for them as the caregiver. I am well aware of the extreme hazard which caregiver anxiety can present.
While nobody is immune from the possibility of being overwhelmed by stress, there do exist strategies which can serve to support one’s capacity to manage stress overloads experienced while caring for a loved one living with chronic conditions. The fear created by an uncertain future in these circumstances may never be eliminated, but services are available, and techniques can be learned to assist individuals in managing the very real possibilities of anxiety relapse resulting from intense stress and disappointment which can accompany such episodes. My own belief is that long-term caregivers must attempt to focus on the present. Ellen and I are all too aware that, short of medical breakthroughs on her condition, we are confronting the inevitable setbacks that may come from her health. We’ve come to understand the necessity of embracing the good days with enthusiasm to get through the unavoidable, difficult periods.
Approximately two years ago, Ellen underwent critical neck surgery. This procedure proved to be a success and, as the result, yielded us the luxury of two of the best years of our past decade. We engaged in a whole host of productive and rewarding activities. Our lives were as close to “normal” as we might have hoped for. We were once again able to engage in purposeful endeavors that previously would have proved too vigorous. Ellen would still continue to confront physical constraints and a level of pain but did so with this new-found hope. The two of us believed this recent optimism was leading us to a less challenging future.
We were wrong.
This past fall, any semblance of normalcy and the continuation of this encouraging sense of well being came to a crashing halt. Ellen experienced a physical episode that left her temporarily catatonic and unresponsive. For the first time in my life, I endured a panic attack, leaving me psychologically dysfunctional amid my wife’s medical spell. I was hospitalized for the better part of a day. My oldest son and daughter-in-law responded to the crisis and saved my wife’s life.
I learned a valuable lesson that day. I realized that, like all humans, we have limits in terms of our capacity to manage psychological pressures. Apparently, I had reached my limit. This event led me to appreciate that there is no shame in recognizing your very human thresholds. The challenge is acknowledging you have the ability to adapt to those mental and emotional confines. Effective long-term caregiving requires that caregivers make every effort to recognize that fear is an unavoidable part of human existence. For the caregivers of the chronically ill, fear of what the future may hold is much more palpable, often intense and, perhaps, as in the case of my panic attack, temporarily disabling.
Ellen continued enduring devastating episodes. Her condition deteriorated rapidly and significantly due to neck instability. It was determined that more neck surgery was required as soon as possible. It was during one of Ellen’s physical meltdowns that I would experience another panic attack which left me incapable of caring for my wife. I would enter psychological counseling for a brief period and was provided with anti-anxiety medication that I have not yet had the need for, since the initial panic episode.
In January of this year, Ellen once again underwent life-threatening surgery on her neck; two more vertebrae were fused. While she lost some flexibility, the surgery, if successful, would serve to eliminate or minimize the recent myriad of physical symptoms which had proven dangerous. The surgery appears to have been successful as the severe symptoms of the previous months have not returned. To date, we remain hopeful a sense of normalcy and emotional well being will once again grace our lives.
Absent the painful and often debilitating manifestations produced by Ellen’s condition, I seem to be able to manage the anxiety produced by an often uncertain, and at times frightening future. I recognize that just as Ellen’s pain and emotional discomfort will probably never be extinguished from her every day, likewise, my fears and accompanying anxieties will always be a challenge which I can’t ignore; to do so would be a disservice to her quality of life and mine. I must always attempt to remain conscious of the fact that I am simply human. Caregivers must be kind to themselves and constantly build their self-confidence by keeping in mind the successes they have achieved while navigating the emotional rollercoaster which has become the focus of their lives. A sense of self-esteem in managing this critical task of caregiving for the chronically ill and/or those suffering from long-term disabilities is crucial to maintaining a psychological sense of well being and physical health, both necessary to mitigate the task at hand.
For me, positive affirmations and empowering words have encouraged me to recognize the delicate balancing act caregivers must carry out on a daily basis. By accepting responsibilities that go along with being a valuable caregiver, which includes self-care and identifying psychological limitations, the person living with the chronic condition and the caregiver can embrace and foster a healthy relationship that compliments each other’s needs. I never tire of this quote I once heard when describing the task of caregiving: We walk this path together and if you stumble I will take your hand and if I tremble you will hold me tight and all is not lost. The quote brilliantly displays the unspoken cooperation that makes the unknown more bearable. A successful dynamic between the caregiver and the chronically ill loved one is achieved through selflessness, resilience, and patience. Reaching such an advantageous state between each person takes practice, reminders and time; it is an endless ritual. If you do not have a daily mantra or motto to live by, remember that within the darkness lives hope, and that’s all any of us can ask for.
Stuart Smith is the US Pain Foundation Co-Director for Cannabis Advocacy with his wife Ellen and Vice President for Rhode Island Patient Advocacy. The views he expresses in the story are his own.