Janet Edmunson’s husband Charles was diagnosed with PSP in the late 90s. After his death at age 50, a brain autopsy revealed he had corticobasal degeneration. (The four disorders in our group are often confused for each other!)
After her husband died, Janet wrote a book titled “Finding Meaning With Charles: Caregiving With Love Through A Degenerative Disease.” She is also an inspirational speaker.
A radio interview she did on the topic of caregiving is available online. Go to this webpage:
And then click on item #2.
On her website — www.janetedmunson.com/ — she has some tips for caregivers. (I especially find the message that “stress makes you stupid” to be resonating loudly with me these days.) Her tips are copied below.
Tips for Caregivers
by Janet Edmunson
Difficult experiences teach us precious lessons of wisdom. During the later stages in dealing with Charles’s disease, I had learned quite a few lessons:
Don’t wait too long to get help. Trying to do it all seemed like the only way 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 he had the help, he quickly got used to it, after a bit of complaining. I ended up missing out on needed help 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 me and Charles through. 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 a saying 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 unimaginable life difficulty.
Strength comes in helping someone else. The more I committed to help Charles fulfill his goals, the stronger I felt in my care giving. I guess that was because I had become a partner with him in preserving his legacy, which provided meaning and purpose for this struggle.
It’s difficult dealing with the very long good-bye that is part of a neurodegenerative disease. While I didn’t hear her say this, I understand that Nancy Reagan used these words to describe living with Ronald Reagan’s Alzheimer’s disease. While I chose to be optimistic and tried to make the best out of our situation, I had nonetheless been losing my beloved Charles bit by bit. And that was still very difficult and painful.
Assisted suicide is probably not necessary. 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 it was too difficult for him. If he was no longer contributing to life — and was just existing — why shouldn’t we be allowed to do it? But I had learned that for Charles, even though he couldn’t talk, he was still making an impact in other’s 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 too much pain, allowing nature to take its course seemed to be the right thing 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 getting a wheelchair. I felt that he needed to be emotionally ready to address some of these things. However, in some instances, I might have waited longer than I really should have. I could get the gumption to deal with potentially contentious issues only if I psyched myself up first. But even then, these issues took me out of my comfort zone. I watched for the appropriate opportunity and pounced on it when it came, but I wish I could have been more proactive.
Life isn’t fair. That was just the way it was. By accepting that life isn’t fair, 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.