This content was originally posted on EverydayHealth.com
When I started showing signs of dementia, it was my husband, David, who noticed first. As a nurse, David had managed a dementia unit and knew that the symptoms he had noticed — mood swings, memory lapses, anxiety with everyday tasks — were consistent with cognitive decline, and he urged me to see my doctor.
While I dismissed his concerns, David, who I always say is like a dog with his bone, would not put it down. David insisted we visit the doctor and made an appointment.
When I started showing signs of dementia, it was my husband, David, who noticed first. As a nurse, David had managed a dementia unit and knew that the symptoms he had noticed — mood swings, memory lapses, anxiety with everyday tasks — were consistent with cognitive decline, and he urged me to see my doctor.
While I dismissed his concerns, David, who I always say is like a dog with his bone, would not put it down. David insisted we visit the doctor and made an appointment.
As my symptoms continued, a repeat PET scan was ordered by my neurologist but denied by my insurer. Once again, David persisted, finding an opportunity for me to participate in a clinical trial that made it possible for me to have another PET scan and a spinal tap. With these tests, I received an official diagnosis of Alzheimer’s disease at the age of 71.
Information and Support Have Led Me to Advocacy
While it was David who persevered to get me the diagnosis, he also assumed his new role as care partner with equal commitment. The diagnosis was a serious blow. I shut down, stayed home, and avoided talking to people. Eventually, though, I sought out information about the disease and came across individuals living with it giving speeches and talking publicly about their experience.
Their messages woke me up, and got me going. With David by my side, I went public with my diagnosis on Facebook and sought out support and engagement opportunities with the Alzheimer’s Association.
I’m now an advocate, and I speak to state and federal legislators to assist with legislation for awareness and funding to help fight this debilitating disease that has no treatment or cure. I speak to my community to educate and help others living with dementia. I was selected to serve on the Alzheimer’s Association’s Early-Stage Advisory Group. In my role, I speak at conferences and meetings and participate on advisory panels across the country. I couldn’t do this important and fulfilling work without the support of David and my family.
My Husband and Care Team Help Me Get the Job Done
Along the way, David has established friendships with other care partners. He assists me to get from one meeting to another. He accompanies me to various doctor appointments and interacts and discusses my medications and their adjustments.
Many individuals become estranged from family members and friends after a diagnosis. I am a lucky and fortunate one. My family members and friends are very supportive of me and my activities with the Alzheimer’s Association. They attend many of the activities I participate in and are a part of my care team.
My Message to Others With Dementia
I encourage others with dementia and their care partners to get involved in any way they feel comfortable. Keeping active is vitally important for the well-being of the individual and their team through this mutual journey. Educate yourself. Use your “voice” to help and educate others on the dementia diseases.
Remember, Alzheimer’s and other dementias do not have an effective treatment or a cure. It is those of us who get involved and use our voices that will make the end of Alzheimer’s a reality.
In light of my diagnosis, I’ve been able to find purpose in sharing this message, and it’s David’s persistence and support that has made this journey possible.
This content was originally posted on EverydayHealth.com
