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 parentsí 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
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