The Faces of Caregiving: Bette - Stroke, Vascular Dementia

In this series on Family Caregivers, Bette is a woman who defines perseverance and tenacity. She was told she shouldn’t care for her mom in her home more times than she can count (and that was from close family members).

Unfortunately, it is pretty common to be met with resistance when taking on caregiving. It also is very common for caregivers to ignore the naysayers and continue on in spite of the negativity.

That is a form of advocacy in itself.

Bette persevered and cared for her mom for over ten years while also raising three children with her husband. Bette answered a few questions for us about her caregiving experience.

Robert’s Sister:   Tell us about your caregiving situation.

Bette:  I cared for my mother for ten years. She had a stroke in 2002 and five years ago she was diagnosed with vascular dementia. For the first year, we tried to get her back home; she wanted so badly to remain independent in her own home. After several falls, we both knew she would be safer with us and that it would be easier for her.

Robert’s Sister:  Tell us a little bit about the dementia your mom faced.

Bette:  My mother passed away in July of 2012. Vascular dementia and a series of strokes were the cause of her death. Slowly, dementia took my mother’s ability to care for her most basic needs.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've faced?

Bette:  Vascular dementia was our biggest obstacle. Dementia is so unpredictable, it was difficult to always plan for her needs. We have three children, so the unknown created obstacles to work through with them as well. Another obstacle was the routine of the day. There were times the routine felt so heavy.

Robert’s Sister:  How did you overcome that obstacle?

Bette:  Through the coaching of Denise M. Brown of Caregiving.com, I learned to confront one obstacle at a time; take one moment at a time. During the times that I would skip ahead in my mind or in doing, the confusion was increased.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Bette: Caregiving.com. I am so grateful for the support and resources offered there to myself and my family. Because of this support, I was able to begin a support group for Family Caregivers in our community.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Bette:  In 2009, I went through a very challenging time. Through Caregiving.com and the resources Denise Brown provides, I was able to feel better – to feel supported. I want to be able to share because I know other family caregivers can feel better too.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Bette:  In addition to the support group, I was able to help schedule Denise Brown of Caregiving.com to speak in our community. Most recently, I helped organize, and participated in a booth at Ohio State, sharing Caregiving.com there. [Note from Robert's Sister:  Bette was also instrumental in bringing Caregiving.com to Sacramento for a seminar earlier this summer.]

Robert’s Sister:  Is there anything else you want people to know?

Bette:  It will be okay. What you are doing makes such a difference – both for you and for your caree. I encourage you to communicate with others about your story and keep communication open between you and your caree.

Robert’s Sister:  How can people contact you?  

Bette: I blog on AfterGiving.com and am also on Twitter using @bettebythesea and Facebook as Bette Derrah Scott.

Robert’s Sister:  Many thanks to Bette for her time and willingness to share her experiences. Thoughts of support and sympathy continue to go out to Bette while she deals with the recent loss of her mom.

Next, we will meet Jane who cares for her teenage daughter, Nicole, who developed Pulmonary Arterial Hypertension and Eisenmengers Syndrome due to a congenital heart defect which went undiagnosed for several years.