Young Onset Alzheimer’s Disease: One Family's Story
In 2001 my husband Michael was diagnosed with Young Onset Alzheimer’s Disease at the age of 36. He has an inherited form of the disease - Early Onset Familial Alzheimer’s - and has already lost both his mother and brother to the disease.
From the very beginning, both my husband and I relied on our faith to get us through life's trials. Our faith has been tested numerous times throughout the last ten years. Since the diagnosis, my husband has been hospitalized for anger and agitation management, dehydration, emergency gall bladder surgery, a collapsed lung, seizures, and pulmonary embolisms. Each setback created a unique challenge as I faced caring for my husband, working full time, and raising two very young children.
Anyone who has had any experience with Alzheimer’s Disease knows that it is an unrelenting, hideous disease. Most adults don’t understand the symptoms and the personality changes in a patient. Our children were only 7 & 9 years old at the time of his diagnosis. Imagine being a child and watching your dad – the man who gave you piggy back rides, took you for bike rides, played ball with you – slowly lose the ability to do any of that. Imagine being a young mother and wife watching your husband decline rapidly (as is common in Young Onset), knowing that it’s just you alone to raise your children -- even though your husband is still with you. The term “married widow” is so perfect for the wife of someone with Alzheimer’s Disease.
This journey has been extremely difficult, sometimes funny, and quite often rewarding. Instead of being an older person who has lived their life and now looks forward to retirement, I was faced with the challenge of caring for my husband and children while working full time. Neither one of us were old enough for 401Ks, pension plans, retirement savings, etc. Financially, this disease has destroyed us.
In light of our all financial difficulties, as well as the emotional devastation that has continuously caused our life to be turned upside down, we have often turned to our sense of humor to help alleviate some of the stresses that go along with caregiving. Our home is filled with laughter. My husband has a great sense of humor, so we always try to keep the sound of laughter present for him to hear. We share our stories with him, tell him our jokes and always include him in any celebrations we have. We always treat him like an active part of our family, even though he hasn’t spoken a word in six years.
I decided early on to try to keep Mike home until the end. I spoke regularly with our children about their feelings as they matured, and made sure their voices were heard. Now currently in the end stages of the disease and on hospice care, Mike still lives at home with us. I truly feel it’s from the love, support and family so close to my husband that keeps his spirit alive. We even nicknamed him “The Energizer Bunny.” I find my strength in my faith - first and foremost. Without this, I have no idea where I would be. I’ve also learned to ask for help when I really need it. This has been the most difficult issue for me. A friend of mind reminded me of how much I loved to help others. She said to me, “Don’t take that feeling away from others who want to help YOU.”
Faith, a sense of humor, and humility to ask for help -- these three things have kept me going and have given me strength each and every day. My husband doesn’t deserve this disease; nobody does. Becoming an advocate has helped me feel like I am doing something to make a difference.
I will not let this disease win.
Karen is a legal assistant for a real estate attorney as well as a full time caregiver to her husband. She is an advocate for Alzheimer's Disease research and awareness, especially for Young Onset Alzheimer's. She lives in Westbury NY with her husband and two children.