From the AlzAuthors Blog: Alzheimer's Blogger and Advocate Amie McGraham

LIFE, REPURPOSED

By Amie McGraham

The year I turned fifty, I transitioned from a successful thirty-year sales and marketing career to the role of primary caregiver for my mother, returning to the island home of my childhood three thousand miles away. Mom has had Alzheimer’s for the past few years and, while she’s aware that she’s slowly slipping away, refuses to recognize this because of her religious beliefs. Disease of any type is a topic we never talk about. For her, to acknowledge dementia would be to admit that disease is real: that God’s plan has been altered.

I was raised in this religion. Based on faith healing, it rejects medicine, doctors and hospitals; prohibits alcohol, tobacco, caffeine and drugs. My parents divorced when I was eleven and I divorced myself from religion, beginning a twenty-five year spiral into a life of alcoholism, half measures and wanderlust; unfulfilled careers and relationships. Eventually, I clawed my way out and began rebuilding my life.

Repairing the relationship with my mother is part of my recovery. Immersion into the world of Alzheimer’s caregiving initially felt like a labyrinth in which all roads seemed to lead to frustration, anger and impatience. Sometimes it seemed more like a duty. But caregiving, I’ve discovered, is truly the best form of service. It's taken a while to embrace this; longer to actually live it. In caring for my mother -- actually living with her for the first time since my reckless departure from her life at age thirteen -- I have developed real compassion. For my mother. For others. And for myself.

From the AlzAuthors Blog: Lauren Dykovitz, author of Learning to Weather the Storm

By Lauren Dykovitz

When I was just 25 years old, my whole world was turned upside down. My mom, who was 62 at the time, was diagnosed with Early Onset Alzheimer’s Disease. I remember that phone call like it was yesterday, although it has been over seven years now. I immediately felt completely alone and utterly lost. I didn’t know anyone my age who had a parent with Alzheimer’s. I had heard a few people talk about a grandparent who had died of the disease, but never a parent. I felt like I had nowhere to turn and no one to confide in, so I didn’t tell anyone about it. I had just gotten engaged that same month and spent the next year of my life planning my wedding without my mom, while grieving small losses of her along the way. And yet, no one knew that I was suffering. Depressed, helpless, hopeless, and lost, but somehow, I got through that very dark time.

At age 28, I made the decision to quit my full-time job and became a part-time caregiver for my mom. My experience as a caregiver taught me many lessons of life, love, and Alzheimer’s. I eventually came to accept my mom’s illness and began looking at it in a whole new way. Thinking back on the beginning, I remembered those feelings of loneliness and isolation all too well. I wondered how many other younger people were dealing with a parent’s Alzheimer’s and felt like I once did. I wanted to help them. I decided to share my story with others by writing a blog. The encouragement and praise of my readers led me to write my book, "Learning to Weather the Storm: A Story of Life, Love, and Alzheimer’s."

From the AlzAuthors Blog: Alzheimer's Advocate Brian Kursonis

 

By Ann Campanella



Brian Kursonis, who has early-onset Alzheimer’s, and I met for the first time back in April. He showed up at the memory care facility where I was doing a reading from Motherhood: Lost and Found, a memoir about my mother’s descent into Alzheimer’s. He had reached out to me a few months earlier after seeing some posts on social media about my mother’s illness.

Brian had attempted to meet me at two earlier book signing events. The first one came and went because, well, he forgot about it. The second one, there was some confusion about which Barnes & Noble I would be at, so we ended up missing each other.

The third time was the charm. When Brian walked into the dining room of the memory care facility, I recognized him immediately from photos I'd seen on Facebook and Twitter. I asked him to join our group that had gathered around a long table. I was struck by Brian’s kind smile, his intelligence and wisdom and the fact that he and I were almost the same age.

 At the time, Brian was 55 and I was 56. We connected instantly, perhaps because I had experienced 14 years of my mother's Alzheimer's, and he was at the beginning of his journey. According to research studies, he may only live 8 to 12 more years, and his cognitive function will likely decline within 2 to 4 years.

During the reading, I asked Brian tentatively if he was comfortable talking about his condition. He cleared his throat and said, “Sure. I’d be happy to.”

From the AlzAuthors Blog: Anticipatory Grief: Powerful Feelings for Alzheimer’s Caregivers

 By Harriet Hodgson

After my father died, my mother moved to Florida to be near her older sister. Two years later her sister died, and Mom felt lost without her. To fill her days, Mom went on a variety of trips, often with a friend. One day she called to tell me she was “out West.”

“What state are you in?” I asked.

“I don’t know.”

What town are you in?”

“I don’t know.”

“Well, where are you now?”

“I’m in a phone booth!” she replied in an angry voice. (Phone booths still existed then.)

Was my mother with a tour group? Did she have enough money? When would she be home? I didn’t have a chance to ask these questions because Mom blurted, “But I can’t talk to you now because the boat is going down the Colorado.” Then she hung up.

From the AlzAuthors Blog: S.R. Karfelt, author of Nobody Told Me - Love in the Time of Dementia

By S. R. Karfelt

Writing about memory loss wasn’t something I’d planned to do. I’m a fiction writer. But when my mother-in-law could no longer live on her own she moved in with me and my husband, her son.

That same husband and son had to go work in Asia soon after she arrived, leaving me alone with Gummy for a short but difficult while. His parting words were, “Do whatever it takes to survive it.”

What do writers do to survive? They write.

Even then I didn’t plan to write a book. I had my next fiction book lined up. My grand plan was to get Gummy settled, on medication, and used to her life here. Then I’d get back to writing. I’d blocked off a couple months to accomplish this.

Is it even possible to get someone used to losing their memory? I was so young and naïve last year. Gummy couldn’t remember where she was or why. She packed to go and asked questions non-stop until she’d drop from exhaustion, and later wake up panicked and deep into sundowning in the middle of the night.

At some point I wrote a desperate post on Facebook. The tsunami of support that came from others who were going through the same thing, or had, surprised me. It helped knowing I wasn’t alone. I continued writing about Gummy privately. Eventually I told my publisher the expected book wasn’t going to happen. I could barely take the time to go into the bathroom alone, let alone write.

       Saffi? Saffi? Where’d you go?

             I’m in the shower, Gummy! I’ll be right out!

       Hello? Is anybody here?