“In all likelihood, you have mild cognitive impairment that will eventually lead to younger-onset Alzheimer’s disease, especially with your family’s history.”
With that brief pronouncement, my world, my husband’s world and our children’s world changed forever. My husband Jim was 48 when we heard those words. I was 40. Our daughter was 9 and our son was 6.
I wasn’t exactly sure what it all meant. The more reading and research I did, the more depressed I became. Words and phrases kept jumping off the page….”no cure,” “death,” “progressively worse,” “dependent,” “no treatments.”
I started to separate myself from Jim and the disease to the point that I became almost businesslike. Researching, interviewing doctors, contacting the Alzheimer’s Association – I was just trying to figure out what was happening and what kind of timeline we were on. I soon found out that there is no timeline. In fact, no two patients have the same symptoms at the same time, in the same order or on the same schedule. It makes for an isolating and desperate feeling.
With two young children at home, I was unable to wallow in my self-pity. I am no longer afforded the luxury of thinking too far ahead, dreaming of a life enchanted. Luckily we are an active family with hectic schedules; this helps me focus on my to-do list and not on our plight.
I have slowly developed an awareness of the new Karen. The old Karen liked to think of herself as a giver, and she was to a certain point. But the new Karen must constantly be giving to Jim, the kids, to others. And it feels good.
Lifting my head off my pillow, pushing away the covers and facing the day ahead of me takes every ounce of self-motivation I can muster. But if I don’t, I won’t get paid, the kids won’t have breakfast, their lunches won’t get made and they won’t make it to school. It is a cycle, and everyone lives it.
Slowly – very slowly – I have pulled myself out of the fog, out of the darkness. Don’t get me wrong; I still have moments of sheer terror and obliterating pain. But I have found my life again. I thought I found my life when I met Jim. Then I thought I found my life when I had each of my children. But I think I was always trying to figure out what my true calling was. I felt I had a purpose, but it eluded me until this past year.
I started by doing advocacy work with the Alzheimer’s Association in Washington D.C. That led to some interviews about the disease. Then, with encouragement from friends, I started writing a blog chronicling our path through younger-onset Alzheimer’s. Emails started pouring in, then more speaking engagements and interviews. Suddenly I realized I had found what I was looking for. I was looking for my life’s calling and this was it. It wasn’t what I would have ever expected or guessed or hoped for, but it is my calling all the same.
Jim’s mother and brother died of Alzheimer’s disease, so it doesn’t take a genius to realize our children have a high probability of also succumbing to this hideous malady. There is my motivation. There is where my strength starts and ends. I don’t feel as if I am going through a mid-life crisis as much as I am going through a mid-life awakening.
Life is so much different since our world became engulfed with all things Alzheimer’s. I feel like a small pilot light inside of me has now been ignited and is ready to spread like a wildfire.
No day is the same and no day is easy. There are days when Jim barely acknowledges me or our kids. He is in his own world. It is hurtful. It is lonely. It is heartbreaking. And I know it’s only going to get worse.
Luckily, I know I am not alone. I think of what I am going to do to help others. By helping others, I will help us. It is a continual shifting back and forth, like water in an eddy.
There is a sense of duty and a sense of awareness that I have never felt before. It empowers me to not only get out of bed and make it through my day, but to do it with a sense of purpose, with an understanding of pain, and the ability to feel powerless against a force I have no control over. There is no way of knowing when it will be felt or when it will strike a new low, but if I were to let myself lose focus of the bigger picture, I would be crushed under the weight of uncertainty that is equaled out by a certainty of what is to come.
I am strong. I am weak. I am a caregiver for a man with younger-onset Alzheimer’s disease.
I will survive. It may not be pretty. It may not be quick. It may cost me everything I cherish, but I will survive with the help of friends, family, strangers and myself. I must survive for my children and for other caregivers that are struggling just as I am. We will all survive together, knowing that we are not alone. Feel the love and the power of others rooting for you to endure.
About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter. She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.