Thank you, Ann, for this excellent and very personal recap of our recent Alzheimer's Talks with Dan Gasby. - Trish
While mingling at WomenAgainstAlzheimer's Out of the Shadows dinner last fall, I noticed a particularly stunning woman. She was chatting with other Alzheimer's advocates, but she stood out in the crowd like no one else. Her flawless complexion glowed, eyes sparkled with joy, and her smile lit up all of Washington’s Union Station.
The woman was Barbara (B.) Smith – successful restaurateur, author and super model. But B. Smith is also living with early onset Alzheimer’s disease. Seeing her there brought home to me - again - that this disease knows no borders. If it can strike B. Smith, it can strike any of us.
On a recent Alzheimer's Talks teleconference, B.’s husband, Dan Gasby, fondly recounted the moment he met her 29 years ago. (Chronicled in the couple’s excellent new book Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer's.) Gasby's love and adoration for her was palpable in the way he described those early years and what became a fairytale marriage. No one would have imagined that one day they would be facing Alzheimer’s head on.
One of the most refreshing things about Gasby is the frankness with which he describes their journey. It is not at all unlike many of our experiences with this horrific disease. He talks about the “WTF” stage when he began noticing unusual behaviors and uncharacteristic forgetfulness in B.
There came a point, he says, when he began to question their marriage. The couple had never had what he characterizes as “blow ups,” and now they were increasing in frequency. Was the relationship going stale? Did B. still love him? What was happening?
Finally, the changes became so apparent that they knew it was time to see a doctor. Still, Alzheimer’s was the furthest thing from their minds. B. was young and the picture of good health. Gasby says it took persistence to get a diagnosis. After changing doctors, tests confirmed that she had issues with memory and executive function, but it wasn’t until they went to Mt. Sinai that the mystery was truly solved. It was there that a PET scan revealed plaques on B.’s brain. No more questions; the diagnosis was conclusive.
Best Friend, Husband, Caregiver
As I listened to Gasby describe his thoughts and feelings, I felt a deep sense of validation. So much of what he shares is parallel to my experience with my mother.
He likens his role to that of a single parent, juggling competing responsibilities without the help of a partner. He has learned there’s no negotiating with someone who has Alzheimer’s. Like all of us who have walked this path, he reminds himself that the lashing out and the unkind words are the disease – not the person. Still, it’s difficult not to react, he says, because we’re human. Sometimes taking on a clinical mindset helps in these moments, he offers.
Gasby uses the analogy of being on an airplane and experiencing turbulence: “You have to put your seatbelt on and ride it out.”
Gasby is also unapologetic in admitting that things reached a point when he knew he needed to bring in outside assistance. “My shoulders are not that big,” he says in regard to continuing to handle everything on a 24x7 basis.
This is a crucial topic, as so many caregivers need reassurance that it’s okay to ask for help. Doing so is not a sign of weakness, but quite the opposite. No matter how much you love someone, being a full time caregiver can be brutal, and burnout is almost inevitable. If the caregiver doesn’t take care of himself or herself, it’s impossible to properly care for someone else.
Gasby currently has help 3 to 5 days per week depending upon need, and his daughter helps as well. When he gets a break, he says it’s important to use that time for things he enjoys like reading, regular workouts, and taking walks. He also tries to meditate for 15 minutes daily to stay centered.
Faith and spirituality are important, according to Gasby. He feels that believing there is a greater power at work is a key to getting through the difficult days. He is also very forthright in acknowledging that he’s human. Like many caregivers, he gets angry with God for allowing this disease to attack the woman he describes as never having a bad word to say about anyone. Then he asks for forgiveness and moves on.
A 21st Century Civil Rights Issue
According to Gasby, when B. received the diagnosis, the couple knew they had two choices - remain silent or use B.’s celebrity as a platform. Without hesitation, they chose the latter, and from that moment forward they’ve been steadfast in their commitment to advocate for the millions affected by Alzheimer’s.
Gasby calls Alzheimer’s a 21st century civil rights issue and a matter of human dignity. The African American and Latino communities, along with women, are at increased risk for the disease, yet they are often the last to come forward. He encourages all of us to get involved in research studies.
He and B. champion the Brain Health Registry as an easy and meaningful way for everyone to help the research community. The registry is entirely online and can be done from the comfort of one’s living room.
“We can go to the moon and back,” says Gasby, "Yet we can’t find a way to solve this problem?”
Gasby closes by asking all of us to “do at least one thing” – send a letter or email to your representatives in Washington and share your personal story. Remind our political leaders that we can either pay now or pay much more down the road when this becomes the health crisis of our lifetime. The clock is ticking.
Let’s take Dan Gasby’s words as a call-to-action in honor of the millions of lives that have been forever changed by Alzheimer's disease. Join UsAgainstAlzheimer’s. SIgn up for the Brain Health Registry. Read the Gasby's incredible book. Do one thing.
Ann Napoletan is a Patient and Caregiver Advocate with UsAgainstAlzheimer's; founder of UsAgainstAlzheimer's Facebook Caregiver Support Group; and writes the blog The Long and Winding Road: Journey through Alzheimer's.