When I was in graduate school, I lived in an apartment with two roommates, and the three of us rotated the household responsibilities of cleaning and cooking. During a week when it was his turn to cook, my one roommate told us about a free dinner on campus. At the time, I was seeing a girl I had been dating throughout college, but that night I talked for two hours with a girl that sat across the table from me at the free church dinner. The girl’s name was Juanita, and I was intrigued by her.
That same night, I broke off the relationship with the girl I had been dating. Unbeknownst to me, Juanita, who was planning to be a single career woman, ran back to her dorm, threw her books on the floor and angrily declared to her roommate that she had met the man she was going to marry. (She was furious because she didn’t want to get married.) Three months later, we did, and we have been married for 53 years.
I joined the Air Force and Juanita and I traveled all around the United States. We also spent four wonderful years in Germany. I served as a commander and also worked in the White House as a communication officer for President Jimmy Carter. Juanita and I had a very interesting and blissful life, along with a steady income.
What is different about our life now is that I have Alzheimer’s.
Juanita takes on more responsibility now as my care partner. There is more stress on her, and more guilt on me. I feel guilty that she has had to give up some of her life to be responsible for our lives. She doesn’t have as much “me” time, and although we spend more time together, we decided to give up life in a 3000-square-foot home to move into an apartment in a senior living community.
The wonderful thing about the community, however, is that we have a 125-resident support group, and there are quite a few couples like us. We have activities to participate in and new people to meet all the time, so our life is as good as it can be given our situation. Juanita leads a caregiver group that she started all on her own. Her previous work as a mental health counselor is a huge blessing for me and the others who participate, and she also gets a great deal of joy in helping people.
Looking back, we were more prepared than most.
As soon as Juanita noticed cognitive changes in my behavior, she encouraged me to see a doctor. The straw that broke the camel’s back was the “kitchen cabinet incident.” Juanita had asked me to get a pan from a cabinet I had been using for decades. She watched as I struggled to get it to open. I thought the door was stuck, and kept pulling and pulling. Finally, she said: “Honey – try the other side.” The cabinet opened immediately.
Juanita has been by my side every step of this journey since I was diagnosed five and a half years ago. I have a family history of Alzheimer’s and I knew the disease was potentially on the horizon. We were lucky in that we were somewhat prepared for it. I went to seminars and educated myself so that I was able skip the phases of anger, denial and grief and go straight to acceptance. Juanita was right there, ready to step into her new role, always so supportive and helpful. She is calm under pressure, intelligent, creative and bounces back quickly from any frustrations. She makes my emotional life easier by being so extremely patient. We still love to kid each other, although I now often miss the nuances. She is cheerful and has a wonderful sense of humor to this day despite how hard the situation can be on her.
I want her to know how much I love her. Caregivers and care partners don’t expect much appreciation, but they should celebrate the moments when they are recognized, because they deserve it. People with Alzheimer’s often go about life unaware of how much caregivers are giving and can’t show the appreciation for their sacrifice. So much attention is put on the person with Alzheimer’s instead of the caregiver, and I hope to see this change in my lifetime.
I want to see more formal attention given to the caregiver side of the house.
I don’t think that there can be ever be enough support for caregivers. Many people do not know how overwhelming and isolating caregiving can be. We need to support caregivers more now than ever and give them what they need.
Caregivers, stay patient. Don’t give up. What’s the old saying? “When the going gets tough, the tough get going.” There is so much expected of caregivers, and the reality is that they can’t be everything to everyone. Don’t let them fade into the background. Support them and let them know their worth. They are our lifeline. I know Juanita is mine.
About the Author: Bob Wellington was diagnosed with Alzheimer’s in 2010. He is a member of the Alzheimer’s Association 2015 National Early-Stage Advisory Group and participates in the Early-Stage Peer to Peer Outreach Program, making calls to newly diagnosed individuals.
Bob and Juanita live in Tacoma, Washington.