What keeps me up at night

I’ve had a few sleepless nights over the past few months since the U.S. election in November. As the inauguration looms, one of the things that has kept me up at night, and is directly related to my career and scholarly work, is the fate of the Affordable Care Act (ACA).

Known by most as Obamacare, the ACA has changed the way in which millions of Americans approach their health care. Indeed, it has allowed millions of Americans even to have access to health care. And while it is not perfect, by the measures we have (which also are not perfect) the ACA has had a positive effect on the health of the nation. Opponents will disagree and deride it. But the numbers we have speak volumes, as do the stories of patients. I find value in both the numbers and the stories; however, I find meaning in the stories, in particular the story of my family.

My father has insurance because of the ACA. He had a pre-existing condition when he signed up, but was able to get coverage anyway. Unfortunately, a few more chronic conditions have been diagnosed since he signed up. But these haven’t prevented him from coverage either. Neither did these conditions increase his premiums. The coverage, though, is what is essential. Without it, the routine care he needs to maintain surveillance of these conditions would be limited, or potentially erased. He’s not old enough for Medicare and doesn’t qualify for Medicaid. Some might say things like “why doesn’t he get insurance through his employer?” Well, he works for a local small business owner who doesn’t offer those kinds of benefits. And, well, it’s more complicated than that, as life usually is.

My mother died unexpectedly five and half years ago. She lost her job and with it went my parents’ health insurance. We thought the stress of searching for a new job and other caregiving burdens was why she started losing weight. But it wasn’t the stress. In July 2011, she was diagnosed with stage IV breast cancer. Twenty-fours after receiving that diagnosis, she went into cardiac arrest. Twelve hours after that she died. She was 53.

She had found a lump in her breast before that, “a couple of years” she said after the diagnosis. She made the decision not to seek care and not to tell us. We never had the chance to discuss those decisions, but my gut tells me that the reasons centered around access to care. Granted, six months earlier, she had health insurance and had had it for several years. But she hadn’t always had it. Having lived and worked her whole life in the Appalachian region of the country, health insurance was not a given when you had a job, if you had job. Most of my youth, we didn’t have health insurance. I can remember trips to the pediatrician where she would have to speak to the office manager in hushed tones about the account and the bill before my brothers and I could be seen. Basically, we went to the doctor only if we were really sick because we couldn’t afford it.

If you go most, if not all of your life, without preventative care and routine access to health care, how can you develop a wellness mindset? Or a good level of health literacy? Without that knowledge and those skills, it’s difficult to be sold on the idea of routine health care and wellness. And with no insurance to cover it, health care becomes something you seek only when the situation is dire, or too late. It is my belief that these are the factors that led my mother to her decision. In my opinion, my mother’s death was the result of a lack of access to care, something that should not be plaguing citizens of the richest nation in the world.

It’s very easy for our political leaders and opponents potentially to lay the blame at the feet of individuals, saying things like they should be working hard or doing things on their own. Why, they’re entrepreneurs and self-starters, and no one ever gave them a handout. These sorts of statements make my blood boil, for a variety of reasons.

I am one generation removed from extreme poverty, my father having grown up in a house with no running water and cracks in the roof that let in the snow during winter. My family has worked, hard, for as long as any of us alive can remember. They have always succeeded in providing the basics. Health care wasn’t seen as a basic necessity. Again, I think that stems from the level of health literacy, which is related to access to care.

But mostly these unfeeling statements infuriate me because I am the one who was sitting there holding my mother’s hand when she went into cardiac arrest. I am the one who collapsed, crying and screaming in the hallway of the hospital while the crash team did their best to revive her. And I am the one who was left wailing and in tears, on my knees next to her bedside after she had died, never wanting to leave her there in the ICU. Because I am the one who knew it could all have been different. Part of my grief has been in the fact that I am a health sciences researcher, with knowledge of cancer care, and that didn’t matter. What mattered was the access to care. What mattered was the monetary cost, a measure that doesn’t even begin to address the true cost.

I hope as the debate continues regarding the ACA and as members of Congress make their decisions that they will hear more of these stories–-stories like my family’s and those of countless others.

In the end, this debate, like so many others, isn’t about right or left; it’s about right or wrong.

Compassion and dignity

I spent weeks searching online for the best butterscotch cream pie recipe I could find. My great-grandmother was joining us for Thanksgiving dinner and I wanted to make the pie in her honor. Granny had spent much of the past year in a skilled nursing facility because of a fall that had left her with a fractured hip and had left my grandmother—her daughter and caregiver—at a breaking point. Her dementia was progressing rapidly and at the time of the hip fracture my grandmother was increasingly unable to cope with the demands of being a family caregiver, particularly given her own health issues.

A good deal of my passion for caregiving came from spending many summers in Granny’s care. Caregiving was her area of expertise and food was a way in which she carried out that task. Pies, especially butterscotch, featured among the many dishes that she provided generations of my family for decades. So, if she was coming dinner, I wanted her to have butterscotch cream pie. It had been several weeks since I had spent time with Granny and I was looking forward to seeing her and having her enjoy the pie I had made just for her.

The woman who was pushed into the dining room in a wheelchair that Thursday in November was not the Granny I knew or the one I had spent time with just several weeks before. And, owing to the progression of her disease, I was a complete stranger to her, so much so that she recoiled from my touch. During dinner, I sat across the dining room table and watched her as she sat in silence, looking lost, bewildered, and angry to be thrust into a large gathering of people she didn’t know or recognize. And the pie? The pie went uneaten. What I had planned—my expectations—didn’t materialize and was replaced by a greater sense of loss. Our matriarch was disappearing right in front of us.

More than a decade later, this experience of witnessing my great-grandmother living with dementia and the ways in which my family dealt with this process drives my research program. I spend my days searching for strategies and tools for symptom management and caregiver support in dementia, as well as exploring the impact providing care for a loved one with dementia can have on families and individuals. While my family’s journey with this disease was unique in that it was ours, it is part of the larger context of family caregiving and the overarching themes are similar. This complicated process is heightened during holidays, and issues around food and eating take center stage during Thanksgiving.

In my work, family caregivers have shared stories of their own experiences navigating the ever-changing landscape of their loved one’s disease process. Though my colleagues and I continue to explore these complex issues and search for solutions in our research, no magic bullet has been discovered. However, one basic idea stands out for me and may be helpful. As with so many arenas in life, approaching your loved one with dementia with compassion and dignity is key. While this can be difficult during a disease process that seems to rob a family incrementally of someone they hold dear, we as human beings need compassion and dignity in our lives.

When we approach someone with compassion and dignity, we give ourselves permission to make mistakes and realize that one size does not fit all. Assumptions about what your loved one with dementia can or cannot do, or will or will not want, most likely will lead to frustration and disappointment—for you and for them. I baked a pie anticipating that Granny would enjoy it. Those were my expectations, not hers. Perhaps had we taken the time as a family to discuss how we might incorporate her into the Thanksgiving holiday as more than merely a dinner guest, the results might have been different. At the very least, we would have been approaching the situation with a bit more compassion and offering her a lot more dignity. Caregivers in my research speak of the modifications and changes they realize they must make, through trial and error, to offer their loved ones the best.

While it may sound simplistic and trite, dignity and compassion are the key components of dementia care in my opinion. Though these concepts alone cannot solve all of the issues related to caring for a loved one dementia, I can think of no better place to start. Sometimes the best answers to complicated questions are the most simple—as simple as pie.