Early-stage caregiving challenges

Cyndy Noel never saw Alzheimer’s disease coming for her husband, Ron. After a career in dentistry, he went back to college and became a part-time counselor in addition to his passions: poetry and art. He was active, creative and engaged.

But Ron’s changing behavior and memory issues over a several year period became impossible to ignore and, despite Cyndy’s own denial, Ron was ultimately diagnosed with dementia.

Cyndy, who has remained active with the Alzheimer’s Association in Colorado Springs even though Ron’s 10-year journey with the disease ended with his death over six years ago, has agreed to share 10 of her key observations from the challenging early years of her husband’s Alzheimer’s disease to provide insights to others facing a dementia diagnosis in a loved one.
 

1. I saw behaviors in Ron that I couldn’t understand. He missed appointments, wasn’t paying his bills, got lost while driving, and had difficulty with conversations. Yet sometimes he seemed normal. I didn’t understand what was happening.
2. Suddenly life as I had known it was falling apart. I had never experienced as many feelings as I did during that time. I felt scared, alone, angry, uncertain, sad. I also felt that I could no longer trust myself. 
3. I discovered that Alzheimer’s can be difficult to diagnose. Though Ron was seen by a local aging center, a geriatric psychiatrist, a neuropsychologist, and a neurologist, he managed to perform well on the tests and there never was a definitive diagnosis nor a medication to resolve it. It took me a while to learn that they can’t fix Alzheimer’s.
4. I was the one who had to change. I’ll always remember the morning when I had the sudden insight that I was the one who had to change. It was challenging to accept this new reality and I became aware of the importance of developing the ability to have patience – for Ron as well as myself.
5. I learned to reach out to others. I discovered the local Area Agency on Aging. I connected with the Alzheimer’s Association where I was able to take classes, read the articles on their website and join a support group. I also needed help in caring for him in the early stages, especially when I was still working.
6. I had to care for myself. I learned about the importance of caring for myself in the Alzheimer’s Association classes. It was likened to putting our oxygen mask on first when flying, so we can be there for those around us.
7. The ability to change my perspective was important. It was hard to continually let go of “normal” and live with “uncertainty.” 
8. Can’t worry what others think. I saw myself being embarrassed when we were in public and was worried about what others were thinking. That was apparent when I had to take him to the ladies’ room with me so he wouldn’t wander off, cancel his order for beer the day we went out to lunch, apologize to others for what he said to them, etc.
9. The challenge is constant. While caring for Ron I was continually challenged whether physically, emotionally, or in my ability to understand. At first, I was in denial, then I realized that I had to learn how to adapt and make the best choices I could, over and over again, as it changed from day to day.
10. Grieving is a process. We lose the person we knew before Alzheimer’s. Then they change and we lose that person. This continues over and over until they eventually take their last breath.

Cyndy earned a Master’s degree in counseling and human services and spent her career in healthcare. She has written a memoir in which she chronicled her caregiving experience with Ron in hopes of inspiring and supporting others who are caring for a loved one.

There are more than 76,000 Coloradans among the 6.5 million Americans living with Alzheimer’s disease, and 160,000 loved ones providing unpaid care for them. To learn more about Alzheimer’s, or the services offered at no charge by the Alzheimer’s Association, go to alz.org or call the free 24/7 Helpline at 800-272-3900.

Alzheimer's Association

The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.