Jim Lucero is a former advertising executive in Lehi, Utah, a father of four and grandfather of nine. He is currently the full-time caregiver for his wife, Laneeda, who was diagnosed with Alzheimer's disease in 2010. November is National Alzheimer's Disease Awareness Month.
In 2007, my sweetheart, Laneeda, made a comment that was both wonderful and risky. “Knock on wood,” she said with a smile. “I feel we have the perfect lives. Everything seems to be just right: our relationship, our health, our kids, your job, our church, our friends.” She was 100% right, but I should have stopped her right there. Things seemed like they couldn’t be better. But, unfortunately, they would soon get much worse.
We were college sweethearts. I fell for her quick and hard, and she for me. We married in school and had our first child while still students, and then three more. I was a budding advertising executive and she was a stay-at-home mom involved in everything: church, PTA, sports teams, writing, volunteering, friends, family and so on. She was the love of my life, and life was good. Then somewhere in 2008, I noticed that my busy, bubbly and beautiful wife wasn’t quite herself. I wrote a quick note in my journal that simply said, “I’m concerned about Laneeda’s short-term memory.”
She got lost while driving roads she had known for years. Once fastidious with her scheduling, she began to forget meetings and appointments.
Fast forward to the afternoon of Jan. 27, 2010. We were in Laneeda’s neurologist’s office, nervously sitting on his couch, clutching each other’s hands, mustering up the courage to hear what he was about to tell us. “Laneeda, you have Alzheimer’s,” the doctor said slowly. Immediately it was like the sky was falling upon us. It was a death sentence, literally. There is no cure for Alzheimer’s. This disease will kill you. Laneeda was only 47 years old.
At that time, we knew little of the disease except that it would eventually take her life and there was nothing we could do about it. Early on I signed up for Google Alerts. Every day I’d receive half a dozen or so articles that Google served to me on Alzheimer’s. I’d read of the devastation of this horrible disease, how it broke down bodies and wasted memories. I was surprised by how many articles there also were about caregivers and their plight, which I didn’t give much attention to, at least in the beginning, while Laneeda was still functioning fairly well.
What I would come to learn in time though is that this disease is nearly as devastating for the caregiver as it is for the patient.
As my wife’s physical and mental health deteriorated, I became her hands and legs and mind, as all caregivers do for the people they love. In time, I began to perform every physical task for her. I bathe and dress her. I brush her teeth and hair. I apply her makeup. I prepare her meals and feed her. I change her diapers and shave her legs. I administer her medication and deal with the doctors and insurance.
This all takes a good amount of time, money, and emotional and physical energy — at times it may feel like more energy than one has to give. And it is a lonely journey, despite the love and support and help of family and loved ones. Because regardless of all the assistance and support from our well-wishers, nothing takes away the fact that this disease is killing my wife.
And yet, so much of this burden remains behind closed doors. Recently I was visiting with some neighbors in our driveway and one of them said, “Hey, I just saw your caregiving segment on TV.” We had recently done an interview with a local NBC affiliate in Salt Lake City. “You know, I see you guys all the time,” she continued. “But I had no idea what really takes place in your life as a caregiver. I’m not sure how you do it, but God bless you.”
Do you know a caregiver? Have you wondered, “What can I do for them?” They’ll usually tell you, “I’m OK, but thanks for asking.” The last thing a caregiver wants to be is a burden. And if anyone is an expert on burdens, it’s a caregiver. So don’t ask, just make an offer. Just act. Find a way to lighten the load and suggest something. I know from experience that any little bit helps, and it will be appreciated.
Since my wife’s diagnosis, I’ve put my career on hold. Many of my friendships have withered. Hobbies and pastimes have been shelved. And I consider myself lucky: While I’m now 60, I began this caregiving journey in my late 40s. I’ve had the physical and emotional strength and financial wherewithal to deal with this monster better than some of my mostly older, mostly female, often less financially capable caregiving peers.
How do we, as caregivers, get through it? There is one thing I cling to — not a silver lining, but at least a beautiful consequence of the hand we’ve been dealt. You see, this disease has one major flaw of its own. In all its immensity, pain and cruelty, Alzheimer’s cannot rival our innate, human capacity to love. This is what gives caregivers like me the resolve to withstand. To survive. To endure. Alzheimer’s actually fuels our capacity to generate greater love, empathy, sacrifice and selfless service. Alzheimer’s has given me the opportunity to love and serve my wife in ways that were unimaginable 39 years ago when she said, “I do.”
And that is something I wouldn’t change for the world.