By Janet C. Bussey, PhD
Alzheimer’s Association Champion Advocate
My mother was an accomplished career public school educator and active civic leader. I was living in Washington, D.C. and had retired after a long career as a social work administrator and assistant professor in Cleveland, Ohio and Washington, D.C. when I decided to move back to Columbus after my mother confided in me that she did not feel safe when I would leave after my regular visits.
I am now my mother’s primary caregiver. I am now an advocate for my mother and others living with Alzheimer’s.
I miss the woman who was my mother. It is difficult watching my mother’s cognitive abilities diminish. She was an active, highly verbal and vivacious woman who is now virtually non-communicative and socially withdrawn. She is aware of her condition and experiences anxiety and sometimes anger about the changes she is experiencing.
It has been difficult for my father to accept my entry into their household as an adult even though he appreciates my help with the physical care of my mother.
My maternal grandmother and at least one of her sisters died with Alzheimer’s. At 67 years of age, I know that I am at high risk for developing Alzheimer’s due to my genetic predisposition.
It has become clear to me that my move to Columbus is most likely permanent. I am now facing the challenge of closing out my life in D.C. and selling my property there. I have had to make the decision to live apart from my two adult daughters that reside in D.C. My older daughter is having her first child this year. I wish I could be there to help her with my grandchild. I am legal guardian for my younger daughter who lives with developmental and health challenges. She does not want to move to Georgia, so I have to accept her decision to live independently from me. She has a stable and valued job in Maryland, but we must stabilize her in supported housing with assistance from D.C. Disability Services.
It is difficult for me to get away from my care giving responsibilities to attend to my personal concerns in D.C. My parents are not comfortable with having strangers in their home or paying for care. My biggest challenge since becoming a caregiver has been maintaining my personal identity and a lifestyle that is personally fulfilling.
I had little professional experience with Alzheimer’s during my social work career. I realized that I needed to educate myself in order to better help my parents. I turned first to the Alzheimer’s Association. They offered me a series of valuable workshops that increased my knowledge. It also connected me with opportunities to become a citizen advocate, options for participation in support groups and provided referral information for respite services, and needed material resources. I have met new friends through the Alzheimer’s Association which has helped me to adjust to the challenges of relocating to Columbus and leaving my life in D.C.
I first went to the Georgia State Capitol in 2015 for the Alzheimer’s Association Awareness Day. I worried that I would not be prepared to advocate with legislators for needed legislation. However, the Alzheimer’s Association staff and volunteers prepared its advocates very well for the tasks. I saw how receptive lawmakers were to our visits and advocacy. My confidence as an advocate was bolstered. I returned in 2016 and 2017.
I also have raised fund for research by my participation in the annual Alzheimer’s Walk since 2014.
I am participating as a research subject in Alzheimer’s studies underway at Emory University and locally. It is my desire to work towards a cure and better medications to slow the progression of the disease.
I want to see national health benefits expanded to cover the full range of care needed by Alzheimer’s patients.
I want to see to it that caregivers are supported and that this disease does not bankrupt families.
I want to see legal protections enacted and enforced.
These are the reason that I have chosen to be an Alzheimer’s Advocate.
To learn more about becoming an advocate, volunteer, events like Walk to End Alzheimer’s or participating in clinical trials, visit alz.org/georgia or call 1-800-272-3900.