2024 Alzheimer's Association Memory Ball Dancing Stars

I have learned to navigate very heavy, end-of-life conversations with my clients who have terminal diagnoses, and I remind them that the only difference between them and me is that they have some idea of what their future might hold—and I have none.

I’ve spent my entire legal career dedicated to estate and long-term care planning. I didn’t exactly choose this path. I have a tendency (maybe for fear of failure?) to pursue things I’m good at. I earned a degree in Spanish, not because I wanted to be a Spanish teacher but because I excelled in Spanish. When I started law school, I had a penchant for estate planning, so naturally I took every estate planning class that was offered. During my first three years as an estate planning associate at a large law firm, an increasing number of my clients were asking questions about long-term care and Medicaid—about which I knew absolutely nothing! I had no personal experience with dementia nor did I have any professional expertise navigating the complexities of aging and disability. However, I was interested and eager to help, so I narrowed my focus and joined an elder law firm outside of Baltimore. There, I felt profound satisfaction in helping my clients untangle complicated legal issues and develop solutions to protect and care for their loved ones. It was  then I began to understand not everyone has “Alzheimer’s Disease.” I learned that different types of dementia present different symptoms, different rates of progression, different rates of inevitable decline. All of this information benefited my planning recommendations. I thought I had all the answers!

Enter the year 2014.

I left the firm in Baltimore  to start my own elder law practice in Sykesville. By way of background, I’m the oldest of five siblings with four younger brothers. Whether being the oldest child or being the only girl bestowed upon me the “gift” of being the co-matriarch and family problem-solver, I don’t know—but I was both. My mother was 58 years old at that time. My brothers and I had noticed some lapses in her memory but she had raised five kids and had a stressful job so the signs were easy to explain away…until they weren’t. She had totaled two cars within a year while driving the same route to and from the office where she worked for more than a decade. She also seemed depressed and confused. My mom had never subscribed to the “concept of mental health,” so persuading her to agree to see a psychiatrist was an uphill battle. Nevertheless, she acquiesced and we left an initial, one-hour psychiatric evaluation with a diagnosis of Generalized Anxiety Disorder and Major Depressive Disorder. She started the standard litany of medications but we noticed no improvement. (Perhaps this is where it became clear to me that, although I didn’t choose my path, maybe it had chosen me.) I scheduled another appointment with a renowned geriatric neuropsychiatrist who spent the next two and a half years guiding us through a series of tests and scans and diagrams and literature and counseling before we had an answer that made sense: it was young-onset Lewy Body Dementia.

The next three years progressed quickly. Because I was the only one of her children in a position to take her in (with my husband’s apprehensive, if not reluctant, approval), in 2017, we built an apartment for her in the only unfinished room of our house. I spent months designing a space that was totally accessible: 36” wide doorways and hallways, a roll-in shower with grab bars, a living space, bedroom, full kitchen, washer and dryer (every amenity I could think of to preserve her dignity and independence so she didn’t feel like she was living in my basement). We even added a separate driveway and same-level entrance to her apartment so she could have visitors and access to the outdoors without having to walk through the main, chaotic, living area upstairs where I was also busy being a wife, and a mother to my two young children, while running my law practice.

As my mom’s need for support increased, I once again felt clueless. I called on my colleagues who had become friends to advise me. I was not a natural care partner to my mom because she and I had issues that will remain forever unresolved as a result of her diagnosis. This confession might be TMI but I believe that the strained relationship/care partner dynamic is not expressed as nearly as often as it exists so I’m here to say it for those who need to hear it. 

You are not alone. I often lost my patience with her; I got frustrated; I cried; I got angry; I became resentful; I punished myself for feeling angry, frustrated, and resentful; and then repeated the cycle until the end—which came quickly.

My mom insisted that I throw her a 66th birthday party in July of 2020, because she said it could be her last. She often became fixated on her “end date,” which made me even more frustrated with her. I was quick to snap back at her that this could be my last birthday too and that we shouldn’t focus on the end but rather be grateful for today.

But she was right. It was her last birthday. She died exactly six months later, at the age of 66.

The final three months of her life were beyond challenging and hopeless for me and they were downright horrific for her. She was constantly disoriented, tearful, confused, agitated, sleepless, and helpless. I stopped working entirely and relied on my staff to keep my practice afloat while I tended to all of her activities of daily living. Emergency hospital admissions turned into involuntary psychiatric admissions. Rehabilitation stays were more difficult than caring for her at home. Managing a revolving door of private duty caregivers required me to be awake at every shift-change to retrain and re-educate each new caregiver. I slept fully clothed every night so that when she screamed out for help, I could sprint down the stairs without delay. It was hell.

I spent what few spare moments I had each day either crying or researching. I joined support groups online, mostly comprised of spouses caring for partners with Lewy Body Dementia—but I found few, if any, “sandwich generation” children in my position. Regardless, I’d take whatever help and guidance I could get. I realized I was very much alone. There was a complete lack of resources for families in the unique and unfortunate position of dealing with young-onset dementia.

As I approach the three-year anniversary of her death, I have still not fully processed what transpired. For a while, I didn’t want to talk or hear about dementia (which was impossible, given my line of work). Client meetings would trigger me emotionally and I’d need hours or days to collect myself and be able to resume functioning at a professional level. I may never make sense of it all, but as with any type of grief, I have found space for it in my daily life.

After my mom died, a dear friend gave me a book of daily meditations about processing grief. Despite my being so candid here to explain why I am dancing in the 2024 Memory Ball, I do not share this level of detail with any intention of tarnishing my mother’s legacy. I love her deeply and I miss her immensely.

When I read the following meditation, I realized that holding space for the good and the badmemories of our loved ones is human and important:

“‘This we owe our beloved dead, whether young or old: to wipe from our memories all that was less than their best, and to carry them in our hearts at their wisest, most compassionate, most creative moments.  Is that not what all of us hope from those who survive us?’ – Elizabeth Watson

The meditation continues:

“In the end we owe them this—and probably give it gladly—and hope for it for ourselves.  But let’s not be too quick to remake the image of the dead.  We need to remember our loved ones in their totality, or we will end up with shadow memories, endowed only with half-light.  Surely our memories of our loved ones are wide enough to encompass all of their natures, including the shortcomings and errors which are the human lot.  The foibles of our loved ones can provide food for laughter, anger, tears—the stuff of family bonding. 

Then, as all these memories sift through the screens of time and the basic love in which we hold one another, what will stay in our minds will be the most endearing and wisest qualities, with enough fragments of foible and shortcoming, remembered in forgiveness and love, to make us human.

In the remembered image of a loved one there is room—and affection—for the person in his or her fullness.”

I’m dancing to raise AWARENESS OF YOUNG-ONSET DEMENTIA!

I’m dancing to support research to END ALL FORMS OF DEMENTIA!

I’m dancing to SUPPORT SANDWICH GENERATION CARE PARTNERS!

I’m dancing myself OUT OF A JOB, so that my future clients will only need my help to plan for their great-grandchildren and not how to pay for long-term care for their parents!

I’m dancing FOR MY MOM, because it reminds me of the 13 years of my childhood I spent dancing—my mom was my biggest cheerleader—before her life was taken away decades too soon.

Your donation will help my mission. Please give generously, because if you haven’t already been personally affected by the devastation of dementia, you (or someone close to you) will be.

Thank you infinitely for your support! I sincerely hope you choose to join me on April 6, 2024, to dance together, share experiences, raise a glass, raise money, and SHAKE IT OFF!