Compassion in Caregiving

September 18, 2024

Kay Adams is a Denver-based dementia coach, educator, and speaker. She is the founder of Compassion Works, LLC. She is the author of “Bedside Witness: Stories of Hope, Healing, and Humanity,” the daughter of a mother who is living with dementia, and the proud mother of her teenaged son, Eli. Her greatest teacher of all.

I work as a clinical social worker and my job is to empower care partners and organizations impacted by dementia. As a dementia coach and educator, I support family and professional caregivers across the country seeking knowledge, guidance, validation, and a safe, affirming place in which to learn the necessary skills to navigate the challenging and uncharted territory known as dementia caregiving.

It’s a privilege doing this intimate work, and I consider it a calling, but when my own mother started showing signs of cognitive decline during COVID, everything I’d learned over the past 25 years about supporting people impacted by dementia went flying out the window. It’s so different when it’s your own flesh and blood whose brain and behavior is changing right before your eyes. 

I quickly learned that perspective is everything, and seeing the disease first-hand from the lens of a concerned daughter was vastly different than observing it from the more distant viewpoint I typically have in my professional role. During the daily phone calls I made to Mom in the early months of 2020, I began to notice some strange themes emerging from our conversations. These came in the form of paranoia, delusions, and my mothers’ unshakeable belief that everyone and their dog was “hacking” her phone, internet connection, computer, television, and bank accounts. The fact is she has never been the victim of any foul play or exploitation — except within the confines of her own muddled mind, due to complex brain changes.

As the pandemic mercilessly marched into 2021, my mother’s symptoms further escalated, and I began to share my growing worries about her condition with my family back home. However, my attempts to sound the alarm about what I was seeing were mostly met with humor, and a polite disregard that anything was seriously amiss. After all, she was in her early 90s, so what else could we expect? Trying to get the message across to my family that our beloved mother and grandmother was not the same rational, clear-headed, and capable woman that we’d always known, was deeply challenging for me, despite my professional training. Trying to get my family to comprehend that Mom’s disease would rapidly require increasing amounts of our collective time and resources seemed utterly impossible.

It’s taken over four years for my family members to finally accept that she has dementia, because the symptoms that Mom displayed along the way differed widely from the stereotypes most people have of this disease. Our situation is further complicated by the fact that Mom has steadfastly refused to participate in any cognitive evaluation that would help determine an “official” diagnosis. So, even without the benefit of a formal dementia diagnosis, our family has learned to advocate for her best interests by staying in weekly communication with each other through phone calls, texts and emails, by working collaboratively to divvy up daily tasks that Mom needs assistance with, and by keeping our eyes and minds wide open for what lies ahead, instead of resorting to old worn-out patterns of resistance or denial.

Unfortunately, my family’s story is not unique when it comes to having a loved one who is exhibiting clear signs of cognitive decline and dementia, but who has never had any medical evaluation to determine the specific cause. My mother, like millions of others who are living with dementia, has no insight or awareness into her brain changes, and firmly believes that all the problems she is experiencing are generated from the world around her, when in reality, her troubles exist primarily inside her failing brain. Sometimes, the best we can do as concerned family members is to arm ourselves with as much knowledge about this disease as possible, so we can at least advocate for our loved ones who are living with brain change– even when they don’t believe they need our help at all.

I’ve learned the importance of using empathy and patience when attempting to educate others about dementia; to walk a mile in their shoes in order to try to understand their unique perspectives; to recognize that everyone processes information and emotions differently, and at varying rates of speed. I’ve discovered that there’s no “right way” to walk this path, and that we need to hold each other up on this long and challenging journey, or we’ll be the next ones to fall prey to illness ourselves.

Lastly, I’ve come to understand that it takes time to change another person’s mindset, or for them to integrate new information or ways of thinking into their life. We must be persistent in our continued efforts to offer support and education to our family members and friends about dementia, while simultaneously maintaining a respectful awareness that each person will go at their own pace on this journey of discovery.  The less we force our own timelines and agendas onto those around us, the sooner they will be able to find their own way to acceptance, and the better off we will all be in the end.