Our Stories
Katie’s Story
My story didn’t begin at my mother’s diagnosis over 11 years ago. It began years before, when I started feeling curiosity about her random actions, frustration with her apparent apathy and anger about her neglect. Why would she leave the stovetop on with nothing cooking? Turn the faucet water on, but not off? Not show interest in sewing (her favorite hobby), or in her grandbabies and their little lives? I was frustrated when she started pinning her clothes in the same places she had already hemmed, couldn’t figure out zippers and especially when I realized she could not get her cell phone off the lock screen or remember the password. I remember watching Still Alice, a movie about a college professor’s journey through Alzheimer’s, with my children and realizing: THIS is my mom. These were not “normal” actions for a 60 year old.
The reveal was slow, ambiguous and betraying; all hallmarks of this disease.
There is acute pain, suffering, and real grief that comes at diagnosis. After her anxiety reached a crisis point while traveling abroad, my concerned father (who would become her loving/devoted caregiver) began taking her to medical facilities for months of testing. Most of that time period is a blur but one thing is distinct and clear in my mind–the neurologist’s diagnosis: “Your mom has Alzheimer's and it is worse than 99.9% of the cases I have seen. She will need around the clock care within a year. Oh, and you can tell her because she won’t remember.”
This is when the true devastation begins. It’s not that people don’t tell you how hard the journey is going to be–you need to take care of yourself first, set up your team, etc. The difficulty is in hearing the information and actually comprehending your new reality; this is an incurable disease. Possibly more difficult is to know where to turn for real help and support. It’s hard to trust others with your loved one’s care. To know that that you WILL still have good times, you will laugh or you will cry, you will make memories (good and bad), not everyone will agree with the primary caregiver’s choices and actions (that’s ok), concerned friends will ask offensive questions and your loved one will still have moments of lucidity until they do not.
Most of this you will only know for sure as it is in the rearview mirror.
Through this ambiguous journey, I have learned immense lessons, grown in empathy and experienced some incredibly compassionate people. I am passionate about Alzheimer’s and the caregiving community; whether it is family, friends, or professional care: I SEE YOU! I hope to continue to learn, grow and support this community beyond my mother’s life and experience. I hope to make a difference and share her legacy.
Suzette’s Story
My father was an avid goal setter and, by his loving and persistent example, so am I. As I was pondering new year’s resolutions, I read my journals and notes from the goals I set in years past. Each and every year, since early adulthood, I have maintained a consistent pattern of evaluating intentions and working on goals which have led me directly to this time and place in my life where I am working with the Lynden Legacy Foundation, a non-profit organization, supporting Alzheimer’s caregivers.
Accomplished shortly after high school, my first related goal was to “help people.” This ambition resulted in a cherished five-year experience working as a licensed practical nurse. The first time I paid attention to the word “gerontology” was during my geriatric clinical rotations. I wasn’t sure how I felt, then, about working with “older people.” I only knew that my mother was taking care of both of my grandmothers in our home, Willy Wonka style. I could see she was exhausted, and yet I knew she wouldn’t have it any other way. My mother was my first example of devoted caregiving.
During my young adult years, I aimed to complete my bachelors degree in Family Studies, which I did with two children under foot. Intrigued with human development and family lifestyles, I narrowed my focus to “enhancing family lifestyles” in my final capstone paper. I remember as my graduation procession line exited the hall, I caught a glimpse of my two young daughters in the back of the room enthusiastically clapping their hands with tears in their eyes. They recognized that their mom had accomplished a large goal.
After focusing 15 years on raising a family, I found myself abruptly thrown into the workforce and the new role of supporting myself and my children. Handed a miracle, I accepted a “temporary” job I hoped would get us through. I was given the opportunity to care for Irene, a gorgeous, classy, 85-year-old role model among women and the Jewish community. Irene’s devoted son, Marty, became my caregiving mentor and partner. Together, we studied Alzheimer’s disease, dementia, and best practices. As Irene’s primary care coordinator, I was honored to witness a life well-lived, and be a part of making Irene’s final seven years a fulfilling part of her life. “Serving seniors” became my new passion.
While caring for Irene, I completed a graduate certificate in gerontology. My program completion became invaluable in creating Irene’s advanced care-team, and through my gerontology practicum at Jewish Family Service, I gained crucial skills in supporting seniors in the community. I learned about the bigger picture and caregiver burnout. So many family caregivers are exhausted and overwhelmed, and don’t have the means or knowledge to find available resources. My pool of heroes grew tremendously as I worked with professors and advisors within the University of Utah Gerontology program and with the director and senior care coordinator at Jewish Family Service. I refined my goal to “supporting caregivers.”
Currently, I’m honored to be part of the Lynden Legacy Foundation. Dr. Marsden Blanch, the founder of our organization, has shown me yet another exceptional example by patiently and proactively caring for his wife, Lynette, and many others, with Alzheimer’s disease for over eleven years. I believe this foundation will help many, many people thrust into the role of caregiver. I’m thrilled to focus on our caregiver pool and respite award program and to work with our wonderful and altruistic foundation director, Katie, as well as our energetic and compassionate event coordinator, Kim. We are passionate about supporting caregivers! Together our goal is “to provide respite care, connect families with resources, and promote self care.”
Kim’s Story
Close your eyes and just imagine how life would be if you couldn’t remember things....you can’t remember the places you normally go, you can’t remember the people you love, you can’t remember how to do the simplest of daily tasks, you can’t remember how to form words, or how to communicate. You can’t remember how to go to the bathroom, you can’t remember how to eat, how to walk, how to dress yourself. Eventually you will forget how to swallow, you will forget how to breathe. You are completely dependent on your caregivers. Can you even imagine how scary that must be for the person who’s brain is slowly dying. They must be terrified. But with everything the person with Alzheimer’s or dementia forgets, they still know feelings. They feel love, they feel pain, they feel terror, they FEEL. And even though they don’t know you anymore, they know how you make them feel. Our job is to make sure they feel safe and loved until they are gone. This journey is so hard on the family members that are now thrust into the role of being a caregiver. A lot of times they don’t get a break, which is so hard. I know this from personal experience. The journey began for our family when my mom was diagnosed with early onset Alzheimer’s disease at the age of 53. Our family had no idea what to expect, and finding help and resources was not easy. We learned as we went. My mom stayed home for her entire 10 year battle. My dad was her primary caregiver, and the rest of us helped the best we could. She died in 2012 at the age of 63. Alzheimer’s is an evil disease that affects not just the person with the disease, but it takes a huge toll on their family and their community. Please help us help the caregivers. Help us get them access to the resources they need, but more importantly to give them the break they so desperately deserve. They need access to respite care so they can step away, and take some time for themselves to refresh and recharge before stepping back into real life and one of the hardest jobs they will ever have to do.