“Are you on your lunch break from work?”
I didn’t want to hear this unrelated question in response to calling my grandmother from Italy to tell her I just got engaged. But my grandmother has Alzheimer’s disease so that’s what happened.
My grandmother—affectionately referred to as “Grammy” by our family—used to serve as my extended family’s matriarch. An independent woman much of her life, Grammy lived with my aunt to help her raise my cousins. While I was in college, however, my family started noticing little moments of forgetfulness or confusion. She would occasionally get disoriented, and her stories became repetitive. Once I remember going to my aunt’s house and seeing her mix up the bread and milk when putting them away after making me French toast.
As time passed, these moments became more and more frequent. Eventually she was diagnosed with early-onset Alzheimer’s. For such a strong woman and our family’s matriarch, this blow devastated all of us.
When I learned of Grammy’s diagnosis, I worked in a skilled nursing facility (SNF) as a new speech-language pathologist. Although my education and training gave me knowledge about her disease, I felt ignored when I offered my family information. I clearly remember pacing in my bedroom and crying on the phone with my mom. I wanted to help—and had the ability to do so—but no one would listen . My mom told me to take a deep breath and start by doing something small. Then I could build on that first step.
My mother’s advice worked. I now apply it to both my personal and professional life. The first small step to help my grandmother involved sending an email to my family with observations before each of her doctors’ appointments. This allows whoever goes with her to ask the right questions and offer relevant details about her progress. And I feel my family now respects my professional knowledge.
Going through this process of earning my family’s respect allowed me to discover the best approach for earning respect at work. Professionally, I now also start by making small suggestions or changes and building on them with colleagues and clients.
Being an SLP also gave me the ability to help develop strategies for my family to use with Grammy. We set up reminders for her in obvious places using a wall calendar and post-it notes. Grammy can be quite stubborn, though, so when I attempted to show her a memory book, she merely brushed it off saying it was too complicated.
We still faced big hurdles as her disease progressed. Following one large family blow-up, my mom and her siblings decided Grammy would stay with each of them for a length of time before traveling to the next. This system ensures we all get to spend time with her, while decreasing the caregiver burden on my aunt. Grammy’s situation and quality of life seemed to stabilize with minimal decline in her cognition. We definitely now share more positive communication as a family.
Sadly, not long after things settled down, tragedy struck our family. My brother killed himself. This caused everyone to begin grieving not long after going through that with Grammy’s loss of independence. The stress on Grammy also caused a notable decline in her cognitive function.
A woman who raised six kids and helped raise seven grandchildren suddenly needed notes to remind her to eat, drink, or take her medication. With this significant decline, many of us began to repeat portions of the grieving process for her as well.
I now notice my family back in the early stages, with some of us defending new issues we see with Grammy’s abilities, while others deny these issues exist. I also see my mother cry over the thought of losing her mother, after already having lost her husband and son. I even find myself becoming more short-tempered and frustrated when speaking to people about Grammy and her status.
Taking work home
It’s one thing to learn about dementia in class and another to work with it, but nothing quite prepares you to witness its progress in someone you love. My mom’s original advice to start small and build still rings true in all aspects of my life. My personal experiences helping Grammy and dealing with my family also still inform my work with clients and their families. I tap into those experiences when speaking to, educating, and counseling families who often find themselves in a similar situation.
Navigating Grammy’s Alzheimer’s with my family from a professional perspective and as her granddaughter makes me a more caring and compassionate SLP. It’s a strange experience knowing someone you love struggles with a disease I see and work with every day. I’ve learned I can make her life better only within the limitations of her disease rather than trying to save her from it as I did in the early days.
Thankfully—in my case at least—none of us is alone and we can lean on each another for support. So in addition to offering strategies for my clients, I also try to help their families understand the benefits of leaning on each other when facing big group decisions and caregiving plans for a loved one.
Brittany Stroker, MS, CCC-SLP, works for Tender Touch Rehab Services and at Body in Balance Physical Therapy. She is an affiliate of ASHA Special Interest Groups 2, Neurogenic Communication Disorders; 3, Voice and Upper Airway Disorders; 13, Swallowing and Swallowing Disorders; and 15, Gerontology. firstname.lastname@example.org