When Alzheimer's hits home

After helping both parents cope with disease, a family stepped up to aid other caregivers

By Ernestine Jones Jolivet | Special to The Baltimore Sun

October 12, 2008

My parents, Virginia Ida and Pythias Alexander Jones, were wonderful people who died from Alzheimer's disease within 13 years of each other.

My mother was diagnosed in 1974 when she was in her 50s. She was the type of person who remembered every birthday or anniversary, but one year she forgot my birthday.

That was when I began to notice a change in her.

I would talk to my mother every day, sometimes two and three times a day. We would talk about everything -- from children and daily happenings to TV soap operas.

Over a period of time during our conversations, she started to repeat herself. I would say, "Mama you just said that." She would reply, "Did I?"

She seemed to sense something was wrong but could not quite figure out what.

She would become frustrated and say, "I don't know what is happening to me."

My mother had always taken care of the family finances, but all of a sudden bills were not paid, checks were not being deposited in the bank and items were misplaced.

We thought maybe she was depressed because of the death of her last remaining sibling, with whom she was very close. Also, I had moved my family from Baltimore City to Baltimore County, and my children no longer went to their grandmother's before and after school.

We took my mother to Phipps Clinic at

Johns Hopkins Hospital for evaluation. She was diagnosed with this illness called Alzheimer's disease. At the time, there was little known about the disease, and we did not have the benefit of the Alzheimer's Association. It was the beginning of a 17-year journey of watching my mother slip away and feeling that there was no way to fight back.

As the years passed, we experienced many emotions and events related to her illness. At a senior center, she disappeared when her companion left her alone for a few minutes to make a phone call. We lived for 24 hours not knowing where she was. It was a horrible experience. By the grace of God, she was returned safely to us.

She was spotted by the police and was able to tell them the general vicinity in which she lived, and they even rode past her house, but she was not able to point it out. Families going through the same thing today have the benefit of the Alzheimer's Association's Safe Return Program, which provides I.D. bracelets and has a photo database.

If loved ones are lost, identifying them is so much easier than in the past, and the chance of returning them home is much improved.

Early in my career as a teacher, I tried to relieve my father of caring for my mother by taking on the job on the weekends. Eventually, I took a year off from school to devote more time to my mother without worrying about work, too. That's where the support of my husband and children really made a difference. During that year, I also learned to take care of myself as well. I exercised regularly and made sure I was healthy so that I could continue to be of help to my family.

My mother's illness affected each family member in different ways. My youngest brother, Pythias, who was in medical school at the time, changed his area of specialty to psychiatry to help him better understand what was going on with our mother.

When my father was diagnosed with Alzheimer's disease in 1998, we were devastated, but we were better able to handle that journey. My father was in his early 80s and still taking care of himself: cooking, driving and managing his rental properties.

The Alzheimer's Association played a critical role in the journey with our dad. My younger sister, Verna L. Jones, a state senator, had the wisdom to seek out this resource.

She did her research and found out that there was help available this time around.

It is so important for families to have an organization like this to bring respite care to families, to share the helpful resources and to offer support groups. My sister has become an advocate for families whose loved ones have Alzheimer's, lobbying for increased funding for research and making sure that the African-American community is more informed of the affect the disease has on us as a people.

I also became an Alzheimer's advocate. My work started when my sorority, Delta Sigma Theta Sorority Inc., formed a nationwide partnership with the National Alzheimer's Association to educate the African- American community about the effects of this disease. I was amazed at how many of my sorority members throughout the country had loved ones with this disease.

When our mother died in 1992, we wanted to do all that we could to help other families get as much information and support to cope. At my mother's funeral, we asked that in lieu of flowers a donation be given to the Alzheimer's Association earmarked for education. Those funds led to the first Caregiver Conference, which took place in 1993.

When our father died in 2004, we made the same request. With the help of additional resources from the Alzheimer's Association, we held the Virginia I. and Pythias A. Jones African American Community Forum on Memory Loss, in 2005.

The forum has developed into an annual event that is free and open to the community. We are very excited to be in our fourth year and are expecting at least 300 people to attend this day of sharing, caring, networking, information-gathering, fun and food.

Together we will learn how to keep our brains healthy and how we can help to find a cure for Alzheimer's so other families won't have to endure the devastation that my family experienced.

Ernestine Jones Jolivet, a retired educator and full-time volunteer, lives in Randallstown.