Support by, and for, Caregivers: A Veteran’s Story

I am a Navy veteran of the Vietnam War, having deployed on two different ships four times to the then-war-torn country. I married the love of my life, Mary, after my first deployment in 1970. Looking back these 46 years, I am so glad I married early in life; it enabled us to have so many wonderful times together, raise a family, have careers, travel the world and enjoy our marriage. And looking back, it also bought us some years together, given that in many ways, we’ve lost some more recently.

Eight years ago, Mary was diagnosed with early onset Alzheimer’s disease. She was just 61 years old. It was a shock to both of us, but while Mary was more at peace with her fate, I was definitely scared. Then life got even more complicated. Just a few months after we found out about Mary’s illness, I was diagnosed with chronic lymphocytic leukemia due to my exposure to Agent Orange while serving in Vietnam. I became very concerned who would care for Mary as she declined if I became ill and needed care myself. Fortunately, thus far my cancer has remained in an early stage and my prognosis is good.

Mary’s dementia caused a slow decline in functioning the first few years. She continued to work as a computer programmer and a unit supervisor for the state government. But the day came when she could no longer work. It was the one time I saw my wife crying as hard as she was. I think she realized that the disease had progressed more rapidly than she was willing to accept. I was so sad for her. Another emotional circumstance happened soon after as I had to convince her to give up driving, and then cooking, which she loved to do. Her independence was disappearing, causing much heartache for both of us — and, for me, apprehension concerning the future. Mary’s world had become smaller and smaller, while I had to provide more and more care.

Soon it became evident Mary needed a program to occupy her days. Fortunately, we learned of an innovative program in our community that offered persons with early onset dementia a place to exercise, do arts and crafts, and socialize with others who were at a similar stage in the disease. Mary loved going. She was in the program almost a year and a half. But as the dementia grew worse, she was no longer able to participate. I then found a placement in a full-day, five-day-a-week program to help her maintain functioning at the highest level possible. This was hard on me because despite its being an all-day program, she would still arrive home before I got off work, and after a year she could no longer stay home alone safely. Although I desperately wanted to continue work, I had to retire in 2012, at age 62, to be at home and serve as a full-time caregiver.

I cared for Mary at home until June 2014, when the stress of caregiving began to put my health at great risk. At that time Mary became totally incontinent and she wouldn’t cooperate. She became hostile when I tried to clean and change her. The situation was draining me, both physically and emotionally. Mary was up at all hours of the night and several times got out the door. I had a security alarm, so I was awakened and I could run down the street in my PJs and get her before she could get very far. When we went shopping or to church, or anywhere in public, Mary became impossible, as she would scream at me and several times refused to hold on to me in parking lots and while crossing the street. She fought me every step of the way. Her illness had progressed to the point it finally overwhelmed me. I was so sad and at the same time angry and at my wits’ end.

In August 2014, with the complete support of my children, I reluctantly made the agonizing decision to place her in a dementia care assisted facility. Even though she is in a facility, I am still her family caregiver, making sure that her care is up to standard. Mary is now at the early point of the final stage of the disease. She needs total care with eating, bathing, dressing, toileting, transferring (walking) and continence. I have slowly over these years said goodbye to a beautiful, intelligent and loving, dedicated wife, mother to my four children, and grandmother to seven grandchildren, soon to be eight. She no longer knows who I am or recognizes the children.

With the help of my support group, and full support of my children, my family, Mary’s family, and friends, I have survived this journey thus far. No doubt I will rely on them going forward.

Ron Hendler is an American war veteran and family caregiver.