May 2005

On May 18, 2005, we had plans to celebrate one son’s 40th birthday and our older son’s graduation with a Masters after returning to school for a mid-life career change. About 3:00 p.m., our neurologist asked us to see her as she had news on lab tests and a diagnosis. Our daughter, my husband and I received the bad news that J’s balance problems, memory difficulty and changes in thinking were due to Creutzfeldt-Jakob disease (CJD).

That’s how our emotional roller coaster began. We were devastated by the news, but somewhat encouraged as Dr. F told us about a CJD study we might qualify for. From the hospital, we headed for the party to honor our sons. Our family was together there, and we all shared the news at the same time.

We decided to come to San Francisco to participate in a Memory and Aging Center study testing a drug to treat CJD. The two months prior, I gradually became J’s caretaker; more a parent than a wife. I’m retired but was active as a hospice volunteer, child- care nursery worker, baby sitter for my grandkids and church council secretary. These roles are now on hold. Because J falls easily, I haven’t left him alone for two months now. Fortunately, all three of our grown kids live less than one hour from us and have been very supportive. They came to visit Dad so I could leave the house for errands.

For every tragic side of J’s condition, there seems to be other things that provide joy. We’ve been changing roles. He used to pay bills, arrange trips, fix whatever needed fixing and now these jobs are mine. He most misses and complains about not driving. While it is a little scary to take these things over, I’m doing okay and that builds my confidence. Also, J was never one to verbally express his more tender feelings. He has been more loving and able to tell family and friends how much he cares for them. His sense of humor is keener than ever and even his stumbling makes him laugh.

He has not lost his stubbornness and that frustrates me a lot. Even with my special education teaching background, I find it hard to use behavior modification techniques on my two hundred pound child-like husband. What sustains us most is that we are both very committed Christians and have the conviction that as scripture says “All things work together for good for those who love God...” We know life right now is difficult, but God is merciful and we are finding so many ways people are helpful and supportive to us. I believe my background of working with special needs students, leading grief support groups, and working with seniors in the Healthy Seniors program will be a continual source of strength. The love expressed by family and friends has been my joy.