Grandma always made you feel she had been waiting to see just you all day and now the day was complete. ~Marcy DeMaree My grandmother was diagnosed with the early stages of Alzheimer’s disease when I was in fifth grade. At that point in my life, I was a kid. I was selfish as all kids are, so I didn’t think twice about it. I had no idea how it would eventually affect my life, as […]
When my mother Naomi was diagnosed with Alzheimer’s in 2010 at the age of 70, my father, Jack, actually started cooking for the first time in his life. Through the painful realization that we were losing our beloved mom and wife, we found humor in the situation. My father had actually entered the kitchen! This post is an excerpt from The Lost Kitchen: An Alzheimer’s Memoir and Cookbook, which chronicles the story of how my […]
My mom has Alzheimer’s. And it’s not easy. Patience is not a trait that runs in our family, and Alzheimer’s tries to take away your control. But I have learned that by educating myself about the disease and reaching out to others going through similar situations, my sisters and I can stay strong. I was born when my mom was 37 and my dad was 41. They had already “finished” their family – my sisters […]
In the Fall of 2010, my family and I received the worst news we had ever had—my 57-year-old mom had dementia. It’s been four years since we received that initial diagnosis, and the reality and complexity of the disease is only getting more and more difficult to comprehend. I’ve spent the last year watching my mom’s motor skills and memory decline and it truly breaks my heart. I can’t imagine my life without her, and […]
The greatest enemy of any one of our truths may be the rest of our truths. ~William James My father doesn’t know that my sister, Alice, is dead. He doesn’t know that she had cancer, that she suffered, or that she, in a pain-pills-slur, asked to be buried in a red dress with no shoes. My father doesn’t know that I am his daughter, Elizabeth Emily, the girl he nicknamed “E.E.” for brevity and affection. He […]
When my husband Jim, who just turned 53, was first diagnosed with younger-onset Alzheimer’s disease, I wasn’t quite sure what was going on. The doctor didn’t tell us Alzheimer’s is fatal. He didn’t tell us there is no cure or that we should get our affairs in order. He didn’t tell us how long Jim might have left. He simply said, “See you back in six months.” If you are lucky, your doctor might refer […]
I’m in Washington, D.C. today as an Alzheimer’s advocate. Why? Three years ago my life took a very unexpected change in course. In 2011 at the age of 56, I was diagnosed with younger-onset dementia, probable frontotemporal dementia (FTD). But my journey, although altered, is by no means over. I have chosen not to let this disease isolate or silence me. After my diagnosis I found it difficult to locate services and education for people […]
A few weeks ago, I developed a cough. I went to the doctor, they checked everything out and sent me home. But I wasn’t getting better. I started to worry when the cough got really bad and I was having a hard time breathing. I called my son, who told me that if it didn’t get better, I should go to the emergency room. By three in the afternoon, I was still having trouble breathing, […]
Volunteers – both with and without Alzheimer’s disease – are needed to participate in actively enrolling clinical trials about Alzheimer’s and related dementias. Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of treatments and possibly future cures for Alzheimer’s and other dementias. TrialMatch® is a free matching service that connects individuals with Alzheimer’s and other dementias, caregivers, healthy volunteers and physicians with current clinical studies. With a […]
“In all likelihood, you have mild cognitive impairment that will eventually lead to younger-onset Alzheimer’s disease, especially with your family’s history.” With that brief pronouncement, my world, my husband’s world and our children’s world changed forever. My husband Jim was 48 when we heard those words. I was 40. Our daughter was 9 and our son was 6. I wasn’t exactly sure what it all meant. The more reading and research I did, the more depressed I became. […]
