Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.
JOHN: What brought you to Mayo Clinic Connect? What motivates you to take part in the community?
@debbraw: I found Mayo Clinic Connect through my husband’s health journey. He is the most brilliant man I’ve ever met. So, I was just blown away a few years ago when he started behaving differently. He described it as feeling “foggy” or “fuzzy.” This talented and kind aeronautical engineer who fixed everything around our house started having difficulty with minor household repairs. He had unexpected memory lapses. He lost three cell phones in six months – not to mention car keys, coffee cups and watches. He had crazy mood swings. It was frightening for both of us. My husband was diagnosed with mild cognitive impairment (MCI) in December 2015. As the doctors explained it to us, MCI is somewhere between “normal” and dementia. It is not dementia, but people with MCI often progress into Alzheimer’s or some other form of dementia. There are not many treatment options for MCI.
We considered ourselves hugely fortunate to find that Mayo Clinic was sponsoring a program called Healthy Actions to Benefit Independence & Thinking (HABIT) to help patients with MCI and their partners. We were approved for the two-week program and got the last two openings in the session, held February 2016. After the HABIT research studies were completed, Mayo created a closed group on Connect for graduates of the HABIT program so that partners of patients could share their thoughts, concerns and questions. I was so grateful to have this opportunity to be able to communicate and share with others who were going through the same scary journey with their loved ones. Being part of the Mayo Clinic Connect community gives me a sense of “belonging.” This community truly lives up to its name: It provides a real, solid connection that helps reduce the feelings of fear and isolation that come with this kind of diagnosis.
JOHN: What about Connect makes you feel comfortable to share and to be open with the community?
@debbraw: I am totally impressed with the level of professionalism and organization that goes into management, monitoring and nurturing of the Connect community. I cannot say enough about the skill, tact and dedication of the moderators and the experienced mentors.
My situation is different than many others, since the primary group that brought me to Connect is a closed group. You have to have gone through the HABIT program and be a partner of an MCI patient in order to participate. Being in this closed group definitely protects the privacy of the group members. This can be important because in other groups, when one shares a story or has a question, it is generally about oneself. In this group, whenever I share an issue, it involves my husband. Sometimes I think our group members have difficulty sharing because they don’t want to say anything negative or uncomplimentary about their partners. I know I’ve felt that way before. The closed status of the group helps allay that concern.
On the other hand, I know that there are other people dealing with MCI who have not been through the HABIT program who benefit from Connect. Luckily, they share openly in the MCI discussion in the open Caregivers group. You’ll find me participating there, too.
JOHN: What groups do you participate in?
@debbraw: I participate in these groups:
JOHN: Who has been a special connection for you on Connect?
In my closed group, I have two members whom I would call special connections. One is a woman who is primary caregiver for her mom, who is further into the dementia journey than we are. She has been a godsend in suggesting helpful books and just generally being an example of how to keep one’s own spirits up while doing a great job as a caregiver. She doesn’t mind if you see her cry, but most of the time she will make the rest of us smile – or laugh! Another is a woman whose husband has mild cognitive impairment that has not progressed into dementia. I appreciate being able to compare notes on our shared journey, learn from her unique perspective and enjoy her persistent optimism. And finally, I love the random comments of members I don’t even know that well …when they say they are angry, hurt or sad about what we are going through. The genuine heartfelt sharing is what makes this group so important.
JOHN: What surprised you the most about Connect?
@debbraw: Two things surprised me: first, the amount of time, energy and effort – behind the scenes – that goes into managing the site. It shows! And second, I was surprised to see the genuine and authentic conversations that go on every day, many of them life-changing.
JOHN: What energizes you, or how do you find balance in your life?
@debbraw: I’m retired. When I worked, I had a demanding and time-consuming position with the U.S. Department of Labor. I was regional administrator for the Northeast U.S. I traveled a lot. I was energized, but definitely not balanced!
At this point in my life, I just love that I get to decide exactly how to spend my time. I do a lot of volunteer work. I’m very involved with our local Kiwanis Club. We sponsor youth programs in our local schools, and I serve as an advisor in one of our middle school programs and one of our high school Key Clubs, a youth leadership development program. I want to help guide these young people toward lives of leadership and service. That energizes me.
My husband and I have a big blended family: between us we have two daughters, two sons, seven grandchildren and the cutest, most precious little three great-grandchildren you’ve ever seen. They energize me.
Finding balance can be a challenge when you’re dealing with a spouse’s cognitive issues, but nothing beats walking on the beach, enjoying nature and quiet moments with friends and family.
JOHN: Tell us about your favorite pastime or activity.
@debbraw: I’d pick three favorites:
I’ve recently taken up quilting, and I’m in love with the creativity and discipline involved in making a beautiful quilt that later wraps you in warmth, comfort and beauty.
I will always and forever be an avid reader. Reading not only stimulates my mind, it feeds my soul.
I walk in the morning for two or three miles. There is no better way to start the day.
JOHN: Do you have a favorite quote, life motto or personal mantra?
@debbraw: Be the change you want to see in the world. ~Gandhi
JOHN: What do you appreciate the most in your friends?
@debbraw: I appreciate authenticity, genuine empathy and an ability to laugh out loud.
JOHN: What do you love about where you live or vacation?
@debbraw: I live in St. Augustine, Florida, the oldest continuously occupied city in the U.S. The city itself is small – a population of just about 12,000. But, oh what beauty and history we have here. The old historic district is charming, the bayfront is magnificent and a short drive takes you to the gorgeous Atlantic Ocean shore. Every winter, we have an event called Nights of Lights. All the town is lit for the holidays in twinkling white lights: every building, the bayfront, churches and stores. It is so beautiful, it could make you cry.
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