On May 31, 2015, my husband and I made the seven-hundred-mile trip from Atlanta, Georgia, to Gettysburg, Pennsylvania, to pick up my mother from a homeless shelter. It happened so fast and was a whirlwind of chaos and trauma.
My mom, after living by herself for twenty years in a small cottage in the mountains of Pennsylvania, began declining in cognitive functioning, and her short-term memory shattered. I would get calls on holidays wishing me a "Happy Thanksgiving" or a "Merry Christmas" several times during the day. But never did I think that my sixty-year-old mother had Alzheimer's. She was just too young. I will always remember that day when I got the call from one of my mom's friends, saying that my mom had been evicted and was living in her car. Eventually, someone took her to a homeless shelter. That call, that day, would change my husband’s and my life forever.
Who was this woman, and where did my mother go?
I pulled into the parking lot of the shelter and saw my mom standing in the doorway, emaciated, dirty, disheveled, and weary. She weighed a whopping 107 pounds and looked like she had aged thirty years. Her 1997 Nissan Sentra was packed full of dirty clothes, old books, and stale food. Who was this woman, and where did my mother go? I would soon find out that Alzheimer's had invaded my mom's world and was stealing her away from me.
The year and a half since then have included fighting systems of care, like Medicaid, Medicare, SSI, and Social Security. We turned everywhere for help and there was none to be found. Our applications were delayed, lost, denied as we fought for services and financial help. My mom was impoverished her entire life and had no health insurance and no retirement beyond her measly $585 a month from Social Security. To have to beg for services that she had paid into her whole life was frustrating and disheartening. It took months to get appointments with neurologists and doctors we thought could help us.
I took weeks off from work and began losing myself in the caregiving and advocacy world of Alzheimer's. My whole life was put on hold, including my career goals, my marriage, my financial security, and my health.
Caregiver stress is like nothing you will ever experience in your life.
Ten months after moving my mother in with us, I received a call from a private investigator telling me that my father, who I had not seen in twenty years, had died and I needed to settle his affairs and do something with the body.
With all this stress, I continued to decline physically, emotionally, and mentally. Caregiver stress is like nothing you will ever experience in your life. There are no supports for caregivers, and you are left to fight for your loved one and for yourself. At age forty-two, I was sent to the emergency room with a possible stress-induced heart attack. The doctors admitted me for observation and testing for two of the scariest days of my life. But something stirred in me, like survival of the fittest. I wanted to make it through this.
I wanted to show Alzheimer’s that I would not lose, that I would be victorious.
I had experienced great change in my life, a traumatic change, and I had to find a way to survive. I began paying attention to me—physically, mentally, emotionally, and spiritually. I developed an online vision board and set goals for myself in every area of my life. I began rewriting the narrative of my world and pulled the ropes of my humanity out of the hands of Alzheimer's. I sought holistic and healing approaches for my mom, my husband, and myself. Not one doctor, agency, support group, or system of care assisted our family in the healing process.
Resilience arose from the depths of my despair. Now I can say that I am an overcomer, a survivor of the impact of Alzheimer's—both from the disease itself and from the lack of adequate services and programs for caregivers and their loved ones.
A year after rescuing my mom, I have changed my diet, supplemented nutrients I was deficient in, bought a bike, and started riding seventy miles a week. I see a psychologist for my grief and stress and dedicate quiet time for my soul and spirit. I have developed a blog, lost thirty pounds, and enrolled in a health and wellness coaching certification program. I have turned my pain into victory and my hardship into assistance for others.
We can never give up, for our humanity depends on it.
For more about Heather's journey as a caregiver to a loved one with Alzheimer's, you can follow her blog.