For Caregivers, For Fathers

A reflection on Father’s Day…

For almost a decade, my family experienced the deteriorating effects of a disorder which was as mysterious as it was debilitating, and long before there was a doctor’s diagnosis, we were using what our fathers taught us to make the best of the situation. At the beginning of this year, my grandfather died from complications of PSP. A rare, progressive neurological disorder, Progressive supranuclear palsy (PSP) leads to the slow loss of balance, focus, and mobility. For many years, as frustration and questions grew, my once gregarious, opinionated, and compassionate grandfather lost one ability after the other. First there were falls, and then the inability to grip, then speech, and finally sight – his body shutting down, one element at a time.

PSP is relatively unknown in the United States, mainly because it affects approximately 200,000 people (usually over the age of 60) and it cannot be confirmed until after death. This lack of a medical explanation, while often frustrating, took a backseat over the years to the efforts to maintain a balanced day-to-day existence. Creativity and patience were key.

Caring for a chronic and unknown condition takes on a very different shape than caring for individuals and families facing acute and fast-moving ones. It is a marathon. The main runner in our race was my grandmother, who kept a calm, focused, and positive outlook for many years, even when faced with her own health concerns. The support team consisted of my mother, aunts, and a small and dedicated group of aides – inquisitive, dedicated, and passionate.

Father’s Day came and went this past weekend with quiet, personal reflections of the husband, father and grandfather we miss. As I’ve thought these last 5 months about this caregiving experience and the course it ran in our family, I’ve continued to come back to the qualities we no doubt learned from my grandfather (and I from my own father). Elements of a well-led life, each appearing more vividly as another part of him slipped away: gregarious, opinionated, compassionate, creative, patient, calm, focused, positive, inquisitive, dedicated and passionate.

Mothers often receive the bulk of the credit for raising caring, thoughtful and healthy individuals (as they should!) In a climate where hostility and actions-before-thoughts seem to be running rampant, however, it is important to acknowledge the invaluable elements to life and well-being many fathers impart and to remember those who ran their long-fought battles with grace.

Image: My grandfather, Rev. Dr. Arthur R Hall, Christmas 2005.

The Women in Our Lives

Today is International Women’s Day – a day to celebrate the strength and uniqueness of women around the World, but also to acknowledge our daily challenges (yes, I’m a woman!)  I have been fortunate in my life to be surrounded by strong and diverse women – my mom, my grandmothers, aunts, cousins, sisters-in-law, friends, teachers and mentors.  They are mothers, students, scientists, doctors, swimmers, cooks, travelers, musicians, photographers, soldiers, volunteers… I could keep going, but you get my point.

Women in different cultures have varying opportunities, priorities, and worldviews.  Yet, in one of those fantastic twists of humanity, there is a thread of commonality among us.  As the world’s health systems evolve, this commonality among women must be a priority – effective and appropriate prevention and health care for all women.

In the US, this means a commitment to Health in All Policies that address transportation, food and health care access, education, and child care needs.  In Kenya, the establishment of sustainable food security for women affected by HIV.  And in many places in the world, the ability for women to make their own decisions about their bodies.  The health and education of women, as most of you already know, has an exponential impact on the well-being of children and communities.  A well-being, how ever you define it, that is a right.

I have stated before that being part of a given population should not be a negative determinant of health and I’m going to say it again – being a woman should not be a negative determinant of health.  In far too many places in the World, it is.  The women in our lives (“fascinating, if not a little bit scary”!) and their well-being are a cause worth our defense.

Images: Author’s own.  Matriculation day (University of Oxford, UK) and members of the EK Sisterhood Exchange Program (Mfangano Island, Lake Victoria, Kenya).

One Year On

Today marks one year since the devastating earthquake rocked Haiti to its core.  In the early days and months following the destruction I wrote on caregiving and the changing culture of old and new health concerns. This past fall, Haiti was rocked again by a cholera outbreak and a contentious and volatile presidential election. While I watch in awe as all of these events unfold from the comfort and distance of my laptop…a couple of colleagues have been in Haiti (as participant observers) telling part of the story.

•Working for the International Medical Corps, a close friend has been in Port-au-Prince since the summer working in the country’s struggling and overflowing residential care centers. During the cholera outbreak she relayed first-hand accounts of the disease spread and prevention efforts. You can hear her discussing the current situation for many children here!

•In her first trip to Haiti over the last week, a college friend and colleague who works for Management Sciences for Health had the opportunity to meet public health aid workers and see their efforts and practice on the ground. Lucky for us, she has recounted her experience in a recent blog post (and here too!).

We will have to wait and see where this year takes Haiti, but like with so many pressing public health issues, locally and globally, continued interest, research and outreach is the best aid we can give.

*Image: Alexandra Kramer, International Medical Corps, Haiti.

Honoring Health in All

Today is a day we remember, thank and honor those who have served our country – many of whom have and continue to come home with visible and not so visible scars. A new study out this week, and highlighted in the NYTimes “The New Old Age” blog, highlights the struggles of not only Vets, but those who care for them. In addition to traumatic brain injuries and loss of limbs, many Vets face severe post-traumatic stress disorder (PTSD) and depression. Rates of suicide among recent returning service members are on a staggering rise. Stress from being the primary caregiver to an injured veteran is on the rise too, and can have a detrimental affected on those they care for, their communities, and themselves.

While the VA (Veterans Administration) provides some of the best health care in the U.S.,  there is more to be done to create communities and environments which are supportive and accessible to all Vets and their families. Communities need to be accessible, both through universal and sustainable design (i.e. sidewalk cut-outs) and through affordable and safe public transportation. Vets and their caregivers risk isolation, from their communities and the services they need, increasing stress and depression.  Homeless and minority veterans face further challenges, many returning to communities already facing health disparities – poor housing, lack of health and educational services, little access to fresh and affordable foods, and other elements considered important to “recovery” and well-being. Being a veteran should not be a negative social determinant of health.

Caregivers come in all forms, and often rise to the occasion with their own strength and courage when faced with adversity. There have been many innovations in care and rehabilitation for injured Vets (yoga, guitar, amazing prosthetic technology, scuba diving, etc.), but our communities are not adapting to the new realities they and their caregivers face. Health should be for all, and in all we do, and should be part of our national tribute to those who chose the greater good over themselves.

Reluctant Reality

Many of us have aging parents and grandparents, facing any number of degenerative conditions, as well as family and friends facing the uncertain future that the diagnosis of chronic conditions, including cancers, can bring. Various factors in our society, here in the United States (and is other industrialized countries including the U.K. and Canada), have led to an increase in a variety of cancers, cardiovascular disease (CVD), diabetes, and others. These factors include longer life spans (we are living long enough to get ill in ways we might not have several generations ago), diet and lifestyle choices, and environmental (both “natural” and man-made) variants. With all that said, industrialized countries have growing segments of their populations living with, and inevitably dying from, these conditions. This has created an industry (for lack of a better word) of end-of-life care, including palliative care and hospice.

For those who may not know, palliative care is a method focused on alleviating pain, setting realistic goals, and realizing that for some individuals, quality of life is more important than further treatments. Now a standard option in the majority of U.S. hospitals, palliative care grew out of a backlash towards life and death becoming overly medicalized (some would argue it still is) and the idea that being present at the end of your life (with little physical pain) may be more important to some than being hooked-up to ventilators, feeding tubes, IV’s, etc. Palliative care does not necessarily mean individuals are giving-up or giving-in, it means that they, with the consultation and support of their physicians, have systematically, realistically, and reflectively addressed their health and their lives.

The NYTimes is running a series on the experience of terminal illness with a piece this past Sunday spotlighting a palliative care doctor fighting her own demise from cancer – her intellectual self at odds with her sick self. I have no idea how I would face such a challenge, how long and how hard I would fight. Facing death is a very personal and private struggle, yet one that is experienced by caregivers and loved ones too. Through my recent work on a caregiver narrative, reading Dr. Pardi’s story, and thinking about caregiving, the more I believe that the individual and community experience of facing illness is just as important as the innovations in medicine which strive to keep us living longer – helping us comprehend and face a reluctant reality.