When I began working as a hospice social worker in the fall of 2001, the only people I’d known who had cognitive impairment or dementia were my maternal grandparents. Since I had just vacated a ten-year career working with wayward youth before starting in hospice, it came as quite a shock for me to find myself working with people between the ages of 70 to 103—a good majority of whom were living with (and dying from) some form of dementia.
I’m not going to lie. It was like entering some kind of altered reality when I first started making weekly visits to my patients who all happened to reside in nursing homes, assisted living facilities, or memory care communities in the Denver metro area. Walking down the long corridors of those buildings was almost like being in a foreign land, as I had never before encountered the sights, smells, or sounds that I was introduced to. It was an extremely difficult adjustment, and the learning curve that went with it was immense.
At first, everything in those environments appeared overwhelmingly sad and depressing: the wheelchairs lined up in the hallway, people calling out “Help me! Help me!” over and over again, and the desperate need for human touch and connection written across the faces of so many of the residents. It took me over a year to mentally adjust to this strange new world, but I gradually began to see past the surface of the unpleasant sights and into the deep humanity that surrounded me everywhere.
I spent over eight years caring for people living with dementia and other terminal illnesses during my time as a hospice social worker. Looking back now, I realize that my job afforded me the chance to grow, to heal, to connect, and to get clear about what really matters, as well as what doesn’t. Working at bedside afforded me a unique and intimate perspective that was truly life-changing, and I was humbled at the multitude of lessons the patients and families taught me about life and living that I could have never learned in quite the same way elsewhere.
I eventually left hospice and started working for a large HMO in Denver. For the next eight years, I was fortunate enough to work in a diagnostic memory clinic surrounded by consummate professionals who were highly skilled in their work diagnosing people with cognitive impairment and dementia and providing support to the families of those individuals impacted by this devastating disease. It felt like a microcosm of hospice because it required that I “hold sacred space” for those patients who were told they had an incurable illness, as well as the families who loved them. It was another incredible job that raised my knowledge, skills, and awareness about dementia.
I eventually moved on to another new role in the organization—as a Dementia Specialist—where I had the opportunity to conduct home visits to people living with dementia and their care partners. I was able to provide emotional support, education, and assistance with their advance directives. Once again, I was humbled by the stories that my patients and families shared with me, for they taught me about the value and sanctity of this one life we are given.
However, one troublesome theme ran through both of these positions. I realized I would never be able to sufficiently meet the needs of the people I was hired to help due to the confines of my job. I quickly saw that two clinic appointments or one home visit would never be enough to meaningfully help the clients I was working with—especially given an illness as misunderstood, insidious, and stressful as dementia tends to be for everyone involved.
With this understanding, in 2019, I made the difficult decision to leave the HMO and start my own business, Compassion Works, LLC. As a dementia coach and educator, I wanted to empower care partners and organizations impacted by dementia by providing supportive services to those people affected by this challenging illness. And not just in one or two appointments, but for as long as they needed me.
Fueled by the inspiration I received from the individuals and families I have had the privilege to serve, I’ve come to understand what it means to have hope amid the darkest of times, to heal even if when we can’t be cured, and to drink deeply from the well of humanity when we are most in need of quenching our thirst for connection.
By Kay M. Adams, LCSW