Finding the gifts in Alzheimer's
May 19, 2016 at 5:11 p.m.
Updated May 23, 2016 at 8:50 a.m.
It happens fairly often. Someone will come up to Byron and me to say hello. After they acknowledge Byron, he becomes invisible, apparently, and the person will say (in a lowered but still audible voice) something like: “Alzheimer’s is such a devastating disease – my mother/father/husband/wife/etc. had it and (insert worst experiences). Other caregivers tell me this happens to them, too. Why are people with Alzheimer’s sometimes treated as if they have no awareness or feelings?
Nobody does this on purpose. I’ve unknowingly said hurtful things, too. Why do we do this? Because of the stigma that surrounds Alzheimer’s. In a recent post I wrote about the fact that stigma keeps many families silent about the disease, which means that caregivers don’t ask for help. It is a conversation that needs to be ongoing. Stigma is embedded so deeply in us we do not even recognize it at times. It affects both our thoughts and judgements, due in part to a lack of public awareness and understanding of the disease. It happens when we see a label instead of the person behind it.
Many people forget, “…there is a person beneath the cloak of dementia – one who has feelings, one who has led a life full of rich experiences and one who deserves a dignified life” (“A Dignified Life” by Virginia Bell and David Troxel). Speaking of “a life full of rich experiences,” let me tell you about Jack and Nelda Strong.
We were very blessed to meet this amazing couple a few months after Byron was diagnosed in 2011. Jack had been diagnosed with Alzheimer’s in 2006 at age 75. He and Nelda became our role models on how to live with the disease after we got to know them through an Alzheimer’s support/education group.
They told us, “We are viewing this disease as a curve in the road, not the end of the road. It is part of our lives, but not the center of our lives. We seize every moment. We laugh, have fun, and enjoy each other to the fullest. God is good.” I believe those were the first positive comments I had ever heard about living with Alzheimer’s – about being overcomers and not viewing yourselves as “victims” of the disease. I remember I felt a huge load lift off of me.
Jack and Nelda continued to be “light-bearers” for us these past five years after Byron’s diagnosis. On July 28, 2015, Jack died at age 85. I would not say he “lost his battle with Alzheimer’s” as is sometimes said. Oh no – I would say Jack Strong won his battle with Alzheimer’s. He showed us how to live well in the midst of the disease. I think anyone who knew Jack probably developed a different view about Alzheimer’s than they had before, because of how Jack lived. He allowed people to see the person instead of the label. That is what it takes to get rid of stigma. All of us who are dealing with Alzheimer’s in some way need to tell our stories and help others to also see the person behind the disease.
I had lunch with Nelda recently, and we talked about their long journey. I have always marveled at her grace, acceptance and joy through it all. Nelda has been always uplifting…always an inspiration – not only with her words but by the way she lived, loved and took care of Jack.
“How did you do it?” I asked her during lunch.
She told me, quite simply, that she was always able to find the “gifts” in the midst of the disease. She graciously agreed to write them down so I could share with you. Every caregiver and family member of a person with Alzheimer’s (or any disease) can benefit from her wisdom, insight and example.
· We were connected heart, MIND, and soul.
· It was the perfect opportunity to express my love.
· I was so focused on Jack’s well-being that I had no time for my fear of loss.
· It smothered the nuisances and annoyances of everyday life.
· Jack continually showed courage, acceptance, patience, grace and dignity.
· We were quick to find the humor – during difficult days we could laugh and say, "at least it’s not boring."
· I was empowered. I truly felt God's strength. I always prayed for the right words to give Jack peace, comfort, assurance, and love. The journey forced life to be deliberate – now that's a gift.”
I am so grateful to Nelda for sharing her experiences and words of encouragement and wisdom. I really needed to hear them. This past year, I’ve begun to feel the weight of that load I originally lost come back as Byron’s Alzheimer’s continues to progress rapidly. It is very difficult and painful for our family. I struggle with that, along with acknowledging to myself that it is happening. I don’t want the disease to have power over Byron or over our family. I don’t want it to destroy us. I find myself getting angry about many things, when it’s really about what I cannot control.
I know that while Alzheimer’s can be devastating to a family and almost impossibly hard to deal with at times, it does not put us out of the reach of God’s grace. God’s grace is bigger than Alzheimer’s. Ultimately, Alzheimer’s will not win. “In this world you will have trouble. But take heart! I have overcome the world” (John 16:33 NIV). We can rejoice in the Lord always… even in Alzheimer’s.
Thank you, Nelda, for sharing your story. You are a gift to all of us.
I went outside early one morning. It was still dark, and I felt alone. Then one bird began singing his song clearly and purely into the night. Because of the bird’s song, I didn’t feel alone anymore. Then from far away, a second bird began singing back to the first bird. As the darkness began to lift, other birds awoke and joined in. Soon there was a chorus.
It just takes one to start the song.
We start the song by speaking up – by sharing our story.
We start the song and pray for a chorus.
This is a great opportunity to become a part of the "chorus!" Register now to come to East Texas Mindshare, a workshop put on by the Dallas Alzheimer's Association and hosted by Evangelical Presbyterian Church Longview, 3800 Judson Rd. Hear the most current research and treatment options, as well as ways the public can get involved to change the course of the disease and also help support local families dealing with the disease.