CARE TO SHARE is your platform to tell your side of the family caregiving experience.
"My husband became ill one month into our marriage. It was 1999 and he was diagnosed with a neurodegenerative illness. We didn't have a name for it until 2004, when it was finally confirmed as Fragile-X Associated Tremor Ataxia Syndrome. I have been on the spousal caregiving journey for 15 years now and I am fully committed to it full time. Long term in-home care can be stressful because you oversee everything on your own. It is easy to be frustrated and burned out. I always pay attention to my own health and wellbeing, which is why I get extra help from professional aids who come and relieve me to have time for myself. It is important that I get out to see my friends, Well Spouse Association support group, daughters and grandchildren. With God's guidance Vince and I to sustain our marriage."
-- Terri Corcoran (VA, February 2014)
"I am a caregiver for my wife, Cookie, for a couple of years now. She became ill with Parkinson's Disease more than a decade ago. Alzheimer's is something that comes with the disease. We have a good thing going on because we compromise and understand each others limits. I know when to push, she knows when I need space. I do take time to do my own things such as work, shopping, seeing friends and going to support group meetings at Well Spouse Association chapter here in New York. Having balance and following routine is crucial for both of us. We are as prepared as we can be with situations and take things one step at the time. Caregiving is not for everyone and it is important to understand what it takes to become a primary caretaker and legal guardian.
-- Herzl Eisenstadt (NY, January 2014)
"I have been in both places, experiencing both sides of the caregiving journey. I was once cared for by my twin brother, Karl and my sister, Ingrid after a big surgery. The three of us, have worked together in caring for our mother, who at that time suffered from a massive stroke. It was a life changing lesson for all of us and Mom's spirit remains within our hearts. Soon after she passed, we co-founded Leave the Light on Foundation, a non-profit organization dedicated to family caregivers in their caregiving journey. Our main mission is to help others by providing workshops, national hotline assistance, special events and many more. We sought it as our duty to share our knowledge and learn from others as we move forward."
-- Carol Campbell (NY, November 2013)
"I cared for my father for three years in his later stages of dementia. I have witnessed how quickly vascular dementia takes over the brain of the most brilliant man I know. Caring for him at home was undoubtedly challenging but emotionally rewarding. I believe that we have the responsibility of caring for our own family member and that we should anticipate changes in our life. His last breath on my cheek was the most painful yet beautiful memory I hold. I would not have had it any other way."
-- Victoria Sanjuan (NY, October 2013)