Seven years ago, I realized there was something very wrong with my wife of four decades. I did not know what it was. In the beginning, I didn't consider it might be dementia. Lena had known the risk factors and done all the right things to avoid such an outcome. Ironically, while a graduate student at Berkeley, she had refused to use the drugs that were readily available, stating firmly that she would do nothing to damage her brain, since it was the only one she would ever have.
Lena denied there was anything wrong. When I finally dragged her to the neurologist, she failed his cognitive tests badly. After examining the MRI, he looked her in the eye and said, "You have dementia, probably Alzheimer's." She had no reaction. It was as if she hadn't heard him. My reaction was altogether different. I understood that her life would end sooner than mine. Both our lives were about to be turned upside down. She would slowly fade away; I would be a caregiver.
I did not know how to be a caregiver. I ran around with my hair on fire, trying to manage her increasingly bizarre behavior. Like most of the medical community, I didn't understand dementia. She refused all medications. Her energy was gone, along with her enthusiasm. I was begging her to take a shower and brush her teeth. She almost set the house on fire. The State took her driver's license after a minor traffic accident. Our idyllic life in Carmel Valley, California, had come to an abrupt halt. We had no family nearby. I called my sister in Houston and asked if she would be willing to help me take care of Lena.
My sister said yes. Soon after that, I got Lena and the dog into my car for the long drive. She asked where we were going. California had been her home for decades. I made up a story that I had bought a condo in Houston so we could be closer to family for part of the year. Once we got to Arizona, she stopped asking about California. She has never mentioned it again.
The first thing you learn is that nobody can deal with dementia alone. The second thing you learn is that lying to your loved one is an essential part of caregiving. The third thing you learn is that, at some point, you're going to need professional help. Lena has been in a memory care residence for three years. My sister and I visit every day. Mentally speaking, those with Alzheimer's age in reverse. My wife is now a cute two-year-old, the baby girl I never had. She is surrounded by loving caregivers. Even when I'm not there, love permeates her world.
Love and human touch are the most important ingredients of the caregiving recipe.
When I finally started reading again, the memoirs about Alzheimer's, written by family caregivers, resonated with me more than technical explanations of a disease I could do nothing about. I decided to write my own memoir: Into the Mist: An Alzheimer's Journey. My hope was, and still is, that others will find my words helpful as they embark on their own difficult journeys. I also wanted to document Lena's interesting and meaningful life, a life that started in Germany at the end of World War II. Her earliest memories, and perhaps the last to leave her, were of being bombed as a two-year-old. For me, writing is also good therapy. The daily act of putting thoughts together on paper soothes my soul.
And I needed that.
Into the Mist is a short but powerful book about the fragility of life and the gift of love. Lena's memories are taken away, along with her extraordinary vitality, long before what promises to be a silent death. At the same time, this is a tale of my search for meaning and quest for personal growth. Lena is protected from fear and suffering by the disease itself; I have become a better person, but not before making every conceivable mistake in dealing with her decline. At the end of the story, she is happy, healthy, and safe in her Alzheimer's bubble in memory care. I have returned from an angry caregiver to a devoted husband.
Our love is stronger than ever.
Along the way, I decided to establish a private foundation with the mission of giving Lena's money to the causes for which she has always been passionate (we have always kept our finances, as well as our last names, separate). Our biology deprived us of children, so it made sense to be generous with our savings. First hers, then mine. The Lindella Foundationmakes grants to non-profits in the Houston area that support isolated seniors, abused animals, and at-risk children. I made my sister the executive director. We can accept donations, but I have a better way.
Buy the book. All royalties go directly to the foundation. My aim is two-fold: first, to get as many people as possible to read the book and benefit from the lessons I have learned; second, to use the money from sales to increase the reach and effectiveness of The Lindella Foundation. Dementia afflicts around ten million people in the United States alone, more than 55 million worldwide. Alzheimer's disease is responsible for about 70% of that. Estimates are that these figures will double by 2050. Medical researchers and doctors are working hard to discover prevention and treatment strategies that can reduce those numbers. So far, dementia is a one-way street, paved with potholes for caregivers.
But it's not all bad. On this journey, there are moments of pure joy. Lena and I live for those moments. I am following her into the mist until she becomes the mist. There is no greater act of love.
*Into the Mist: An Alzheimer's Journey is available at Amazon.com and other online platforms. The book is offered in hardcover, paperback, Kindle, and audio formats.
About The Author:
Paul Shemella lives in Houston, Texas. His wife, Lena, has Alzheimer's disease and lives in a memory care residence nearby. Paul retired from the Navy as a SEAL Captain and lectured at the Naval Postgraduate School in California for twenty years. He is the author of seven books, three textbooks, three novels, and a memoir about his wife's Alzheimer's journey.
