My mother was a seamstress, and when I was younger I would sit on the floor of her sewing room for hours. She would give me the scraps from her serger and I would hand sew doll clothes. I remember hearing the hum of her machines while she sewed and I would look up at her and she would smile at me. When I look back at everything we did together and how much she influenced my life choices, this memory makes me smile and comforts me the most.
Alzheimer’s has always been a part of my life. My first and only memory of my maternal-grandmother was seeing her in the hospital bed and my mother telling me to kiss her on her cheek. She was at the end of her battle with early-onset Alzheimer’s and we were all saying goodbye. I remember her empty eyes and the drool on the side of her mouth, I mostly remember being afraid of her. I kissed her quickly then ran away. As I got older two of my mother’s older sisters were also diagnosed with Alzheimer’s. My mother was number three; she was diagnosed at 57, but it started at 54 at least. At that time, I was 30 and had just had baby number 5. I had a career and then my life stopped. I became her caregiver, while my dad worked. I had first row seats to watching my mother grieve for herself, pray daily for peace, and forget how to thread a sewing machine. Her progression was steady and we are lucky that she is still loving and sweet. This disease made me bitter, angry and depressed. I felt alone and resentful that everyone else’s life was moving forward except mine. Then I saw my kids and that they became caregivers also. It has been 10 years. . . .
I have learned compassion, empathy, and patience. This disease changed me, now I am an advocate for early-onset Alzheimer’s, continuing my education to work with families who have this disease and I tell our story to anyone who will listen.
One piece of advice I would give anyone is that it is okay to be angry, sad and resentful. All of those emotions come with this disease. Try not to lose yourself, join a support group, there are a lot on Facebook. Most importantly, not everyone can be a caregiver AND t is okay to ask for help. IT IS OKAY to say you cant do it anymore. You Matter!
I want the world to know that Alzheimer’s is not a part of aging. I want the world to know that there are children who will only know their parent with this disease and teenagers who help raise their younger sibling while their mom takes care of their dad.
Do not be afraid of this disease.