James Gathany
Caregiving through a Doctor’s Eyes
Caregiving can be anticipated, yet untimely, long distance or right next door, two hours a week to 24 hours a day. Caregiving is universal. It knows no boundaries of age, race, religion, profession or economic status. Caregiving will touch all of our lives at some point along the way.
Dr. Dan, a family physician practicing in the Midwest, was living in the midst of a thriving medical practice while also juggling the responsibilities of a husband and father of three in a bustling family household. Life couldn’t be fuller. Then, all at once, he found himself being called away from his normal routine into the world of caregiving. He was now facing the urgent needs of his elderly parents who lived over 1000 miles away, and his perspectives of caregiving were about to make a dramatic shift.
Dr. Dan and his family made yearly trips to Florida to visit his parents and they eagerly anticipated this time together. Upon their recent arrival, it became painfully clear at the front door that everything had changed since their last visit. Although Dr. Dan and his family had kept in touch regularly, the current situation seemed to have gotten out of hand and the health and stamina of his father and mental capacity of his mother had significantly declined. How could this have happened? Where were the red flags?
For years, Dr. Dan’s father, a former minister, had been faithfully providing care for his wife who suffers from progressive dementia. He was always in control of the situation, never complained or seemed ready to ask the family for help. All along, his father compensated for his wife’s loss of abilities, minimized their needs and downplayed the changes that were happening over the years. His father seemed to insulate the rest of the family from the real problems he faced and kept his own depression and isolation hidden. Unbeknownst to his family, the profound weight of caregiving for his wife had finally taken its toll and his health was now in jeopardy. Although the family realized there were obvious needs, they feared they would have to wait until a crisis occurred before help would be accepted. That crisis was now upon them.
After arriving in Florida, Dr. Dan rushed his father to emergency care for tests and an assessment of his symptoms and health condition. It was difficult not to ask questions or suggest tests. Dr. Dan found himself torn between his role as a caring son and his profession as a physician. At one point, he was even faced with the temptation to jump in and take over his father’s care. He felt pulled in many directions. Then a greater sense of urgency and alarm emerged when the test results revealed a blood clot followed by indications of cancer. The reality of the situation hit hard and Dr. Dan knew that some major decisions would have to be made quickly. His mother could no longer care for herself and needed constant supervision and help with her daily needs. His father would require further testing, possible surgery and treatments. Dr. Dan had to get his family back home, return to his medical practice and plan for his parents to move north as soon as possible. Caregiving was about to take center stage.
Upon returning home, all family members were contacted to discuss a plan of care. It was decided that the best alternative was to have the parents move in with Dr. Dan and his family to allow medical treatments to begin for his father. Fortunately, Dr. Dan’s wife, a former nurse, was willing and able to provide the daily care and supervision of her mother-in-law during this time of uncertainty and transition. Once the parents were resettled, a geriatric care manager was consulted for the purpose of support, planning and connecting to resources. Dr. Dan was also able to partner with his fellow physicians to take over the medical care needs of his father at the local hospital.
The roles of a son and the patriarch of the family were once again challenged, as Dr. Dan took control of the situation, became the decision-maker, and assumed a leadership position. He became an advocate for both of his parents as they were now displaced from their home, had lost their independence (at least temporarily) and had to live within the hectic pace and lifestyle of their son’s family. Relationships had to be reestablished while still maintaining the parents’ dignity. His father, once a strong and capable leader who had served as a missionary in Africa and even fought off lions (literally), was now very ill, fragile from surgery and cancer treatments and had to be fully cared for along with his wife. This was one of the lowest moments his father had ever experienced and the weeks that followed proved to be difficult for the entire family. Everyone’s routine was disrupted and the impact of caregiving permeated all of their lives.
Over the next couple of months, his father completed his treatments and gained back enough strength and perseverance to again provide care for his wife. They have since moved in with their daughter, who took over the next stage of caregiving, and are awaiting admission to an assisted living “campus of care” where they will reside in an apartment with supportive services. When Dr. Dan’s mother is unable to remain at this level of care, she will be moved to an adjoining nursing home where her husband can readily visit her. Everyone involved met this plan with strong approval. Through it all, Dr. Dan recalls that his ability to become a caregiver was fueled by the love and support of his family and help from his colleagues. This truly allowed him to remain steadfast and focus on the needs of his parents until the health crisis finally stabilized.
Dr. Dan shares these final thoughts on how this journey has reshaped him as a person, a son and as a physician:
“First of all, my empathy and sensitivity index for caregivers has increased a hundred-fold and I am now better qualified and prepared to support and assist the caregivers and patients I see in my practice. I have an enhanced appreciation for the trials, decisions, and the urgency for help that caregivers face, along with the strength it takes to endure these circumstances over time. My experience has added to my worth and credibility as a physician and I find I am able to personally share my story with many of my patients.
Secondly, I have an increased awareness of Alzheimer’s disease and how it truly affects families. I have now seen the full spectrum of my mother’s dementia from the early stages of confusion and unexplainable behaviors to her need for 24-hour supervision and daily assistance with her personal care. I marvel at how my father was able to remain fully committed to caregiving through these very difficult years and I have an even greater empathy for the caregivers I serve.
This experience has drawn me closer to my parents, especially my father, and has strengthened our family bonds as we have tried to pull together to provide the best of care. It hasn’t been easy and we have had to resolve some past family conflicts that surfaced during this time. Fortunately, we have been able to focus on honesty and the importance of making decisions that will benefit the whole family.
Lastly, I appreciate the delicate nature of life and have realized that I cannot take life for granted. I have a greater understanding of the larger picture of caregiving, the impact on family relationships and the patience and diligence it requires. I am also struck with the importance and value of asking for help and realize that our situation could have been dealt with more directly if my father would only have asked sooner.
I feel a sense of relief that the pieces are falling into place and that we now have a plan, yet, I am saddened at the fact that my parents will no longer live independently. I have had to get beyond my own denial and face reality as I ponder my parents’ increased needs as well as the end of their lives. I am once again a long distance caregiver for my parents and will continue offering support and monitoring their ever-changing needs along with those of my patients and their caregivers.