By Janet Edmunson

Author and Speaker

Most of us will be a caregiver for someone at sometime during our lifetime. I, unfortunately, found myself in this role when I was in my mid-40s, caring for my husband, Charles, who developed a movement disorder that included some dementia. I thought we’d be together into our 80s, but Charles scarcely managed to reach the age of 50. 

Difficult experiences, like this sometimes offer us precious wisdom. I’d like to share some wisdom I learned from my experience in honor of National Family Caregiver Month this November.

Don’t wait too long to get help. Trying to do everything seemed like the only option at first, but that eventually wore me down. I hadn’t thought that Charles would accept help from home health aides — especially female ones. In retrospect, I found that once the health aides were with us, after a bit of complaining, Charles quickly got used to them. I was the one who ended up missing out on this vital assistance earlier in his disease.

Stress makes you stupid. I couldn’t concentrate, couldn’t find the right word I wanted, or I would just forget things. I understand that there is actually a physiological explanation for this phenomenon: Stress can impact our ability to think clearly. I was glad to realize that I wasn’t really losing my mind.

Surround yourself with positive people and messages. I felt uplifted when I listened to the Norman Vincent Peale tape we had ordered for Charles through the National Library of Congress. Peale’s affirming theme of “you can if you think you can” gave me courage and assurance that my positive attitude was what would get Charles and me through this difficult time. Two other quotes from Peale also encouraged me: “It’s always too soon to quit” and “To every disadvantage there is an advantage.” I wrote each of those down and kept the notes handy. They fit in well with the adage that I had always tried to follow: “When life gives you lemons, make lemonade.” With positive people and messages around me, I had the confidence to make it through this unimaginably difficult period. 

Strength comes in helping someone else. The more I committed myself to helping Charles fulfill his goals, the stronger I felt in my caregiving role. I had become a partner in preserving his legacy—trying to give him the “best rest of life” as possible. This work provided meaning and purpose during our struggle.

It’s difficult dealing with the very long good-bye. While I never heard Nancy Reagan say those words to describe living with Ronald Reagan during his long struggle with Alzheimer’s disease, I certainly understand the sentiment. While I chose to be optimistic and tried to make the best out of our situation, I had nonetheless been losing Charles—my mentor, closest friend and husband—slowly over a five year period. That was tough and painful.

Assisted suicide is probably not the best option. Earlier in Charles’s disease, I had pondered whether assisted suicide might actually be a humane way for Charles to end his life, if living was too difficult for him. If he was no longer contributing to life—and was barely existing—why shouldn’t he be allowed to end his life? But I had learned that for Charles, even though he couldn’t talk, he was still making an impact in others’ lives. Even the hospice staff and volunteers, who never heard him speak, commented on the powerful influence he quietly had on their lives. And because he didn’t show that he was in much pain, allowing nature to take its course seemed to be the right choice for us.

Be more upfront. I wish I could have dealt earlier with certain issues that arose with Charles, such as his driving, retirement, and using a wheelchair. I felt that he needed to be emotionally ready to address some of these transitions. However, in some instances, I might have waited longer than I really should have. My personal tendency is to be an avoider. I want to make everything peaceful and devoid of conflict. Even when I was able to assert myself, these issues took me out of my comfort zone. I watched for the slightest opportunity and when it presented itself, pounced on it, but I wish I could have been more proactive.

Life isn’t fair. That was just the way it was. By accepting this truth, I was usually able to stay clear of the anger and frustration that can paralyze caregivers. My brother explained to me once that the Chinese symbol for crisis is danger plus opportunity. The danger just happened—Charles had a degenerative disease. Even though it was unfair, this tragic opportunity allowed me to live more deeply and passionately. It fostered a closeness between Charles and me that couldn’t have been imagined before the disease. I believe that it is only when you experience such tragedy in your life that you can reach that level of depth in a relationship, although it remains bittersweet.

Caregiving Affirmation: A positive attitude can get you through the toughest times

— Janet Edmunson, M.Ed., is a speaker and author of Finding Meaning with Charles: Caregiving with Love through a Degenerative Disease, available at www.findingmeaningwithcharles.com or through your local or online bookstore.