Barb & Ray
“My parents, Barb and Ray, both live with dementia. My two siblings and I believe that there is a way to provide support for them in a real home in a community where they can age in place with compassion and dignity. They’ve lived for more than 50 years in our family house. Not long ago, we noticed small changes in their behavior; mom and dad forget things; they get lost going to familiar places, and sometimes they seem to revert to a time when they were first married and just starting out together.
We wanted to respect their wishes to have them remain in their own home where the environment was familiar. We made it safe with some home modifications and hiring home care. This lasted for eight months, until one day my mother did not recognize my father and my father got angry with her and started yelling at her. “I am your husband and we have been married for 56 years and have 3 children,” he frustratingly told her.
He is not at the same stage of dementia as my mother. This incident frightened her and the only person who could calm her was my brother. She recognized him as someone who loved her, although she seemed not to know it was her son.
Our parents had become recluses in their own home. They did not go out and the home care aides were not always trained to work with individuals living with dementia. My siblings would spend all of their non-work time at my parents’ home trying to diffuse altercations. I live out of state and provided frequent calls to each of them to help.
We all wanted the best for our parents at the end of their lives and felt that my mom was no longer able to remain in her home safely and we began to search for alternatives. As a person who has been in health- care all my life, the thought of moving her away from her husband of 56 years was devastating. When we moved my mom to a memory care assisted living close to my brother, it was both devastating for us and confusing for my Dad, as he was wondering when my Mom would get better and come home. To compound difficulties, we have had to take away my Dad’s driving privileges, resulting in increased isolation.
I have always believed that our elders are gems we should cherish. My siblings and I did what we knew to be the best option for my mom and dad. There is a better way creating a place where neighbors help each other. No one should have to make the decision to separate loved ones because it is currently the only option. It was the hardest decision I have ever made.”
- Julie Fenton
"As parents of an adult child with disabilities, we know that planning for our daughter’s future is important. When the day comes that we are no longer present to care for her, we believe there has to be a better way than to place her in an institution.
Rena, as she is known affectionately to many in our community, is 27 and lives with down syndrome. Her radiant smile is the first thing you see when you meet her and everyone she meets instantly feels happy. Talking with Rena you will find that she loves to dance; ballet, jazz and tap. Growing up she took classes from a local dance studio. One of her favorite things to do is go to Broadway shows with her family. She can tell you all about the show, who played what part and when. Her mind is just like her Dad’s.
Rena is a Special Olympics champion and has medaled in the 400-meter race, the 800-meter race and the mini- javelin. She loves meeting new people and seeing old friends at the competition, always with a smile on her face. She especially loves when her brother sees her compete as they have a secret handshake they do each time they see each other.
Clearfield County used to have ARC where individuals with disabilities could go and meet people and learn different trades and learn how to do tasks such as cooking, writing and many others. ARC has since
closed and now Rena goes two days a week to Fayette Resources where she learns how to make simple snacks on her own, listens to music and enjoys doing art projects and spending time with her friends.
We do worry about what the future holds for Rena, as we know that we will not be here forever. We want Rena to be with us as long as possible and then with her brother if possible. The Village of Hope would be a place that Rena would flourish. She could live on her own or with others in an environment where anything is possible. She could continue to do all the things she loves to do and learn new ways to contribute to the community. It would be neighbors helping neighbors, like it used to be years ago. Rena would enjoy being able to participate in the arts and music at the Village. Having a place where she would be able to be herself and continue to do all the things she loves is something we want for her. She is the apple of our eye and we want the best for her. We believe that there is a better way and creating the Village of Hope is that better way.”
- Wilson and Carol Fisher