I’m Valerie Ferrero, wife, mother and care partner. My husband Lee was diagnosed with younger-onset Alzheimer’s (also known as early-onset Alzheimer's) in November 2008. This is the beginning of my story…..
It is difficult to know what action to take, what plans to make, or what the future holds when you don’t have the answer to the “elephant in the room.” It took more than seven years for us to get Lee's diagnosis of younger-onset Alzheimer’s.
We began noticing problems when Lee was in his early- to mid-50s. He was the CEO/President of a local non-profit. I realized that things were worse than I suspected when his staff started calling me to find out what was going on or why he missed a meeting. I had been noticing early signs for some time by this point.
I really didn’t know that the problem would turn out to be Alzheimer’s. For one thing my husband was young. Alzheimer’s happened to older people — or so I thought. He kept telling me it was the stress of his job, and I preferred to think that rather than any alternative.
In our quest for answers, we visited the Mayo Clinic in Scottsdale, Arizona, in 2006, where Lee was diagnosed with Mild Cognitive Impairment
and Executive Dysfunction. The doctor prescribed a low dose of Aricpet and suggested that Lee might want to retire. He also stressed that Mild Cognitive Impairment does not necessarily turn in to Alzheimer’s. The doctor wanted us to return in a year.
We returned home and went about our daily lives. We saw a bit of improvement in Lee’s memory issues. But as the year went on, I was still hearing from his office and noticing changes myself. Lee has always been a “people” person. Suddenly, he didn’t want to go to events or meetings. I sensed changes in his personality. Negativity was creeping in where it had never been before. The little things were slowly becoming bigger issues. My once confident husband was losing his self-confidence. He began to second guess himself. And he worked longer and longer hours to make up for the loss of work time in the day.
His work was still stressful and he had become distant and defensive. Things were getting progressively worse. We returned to the Mayo Clinic about a year and half later. The first visit we were there for several days. This time we flew in and out the same day. The diagnosis was still Mild Cognitive Impairment and Executive Dysfunction. The doctor wanted to continue to monitor his progress.
Again, we continued on in our everyday world, but friends were beginning to ask if anything was wrong. Lee was showing more signs of something being very wrong and of considerable stress. He had convinced himself that it was only work-related stress, but by this time I could no longer ignore the “elephant in the room.”
Our children were very aware of the problem from speaking with him every weekend and when they visited. The same story would be repeated over and over again. The same question asked over and over again. This was creating a great deal anxiety for me. I was working and trying to balance the situation at home. It became increasingly difficult. I really needed answers.
I began to notice several troubling changes. He became dependent and seemed to need to know that I was around. This was something totally alien to me. I finally mentioned to our doctor that we needed to do something closer to home. This is when he mentioned the University of California, San Francisco. Another patient suffered similar problems and had had good luck at UCSF.
We scheduled the appointment as soon as possible. Our daughter, Jenny, was pregnant with our grandson John at the time. Our son, Eric, lives in Manhattan. Eric offered to go to the clinic with us. At first I resisted thinking of his costs and time. Fortunately, I relented and he met us in San Francisco. He set up the hotel rooms and everything for us. It was really helpful to have him there.
We were scheduled for early in the morning. I brought copies of all of the records from our never-ending quest for a diagnosis. The day before the visit Lee had an MRI of the brain. We picked up the CD of the scan to take with us. Lee went off with a couple of doctor’s and Eric and I met with other staff. They asked a lot of questions, and I gave them the records we’d brought with us. A little after noon, Lee and the doctor came out. The doctor said that we needed to return about 2 p.m. for a meeting and review of the morning.
Off we went to lunch on the campus. We arrived back at the memory clinic and waited in a conference room with a long table. We were joined by the different members of the staff that the three of us had been meeting with earlier, as well as students and some other doctors. There was a doctor from England. Dr. Bruce Miller, the memory center director.
Dr. Miller asked what we wanted to get out of the visit. My response, "answers." He then explained the diagnosis. It was “Early Onset Alzheimer’s” (now often referred to as “Younger Onset Alzheimer’s). He did several tests right there with Lee and asked him a number of questions. The other doctors also asked questions.
Dr. Miller advised Lee that he would have to retire. Lee didn’t think that retiring would be necessary. Eric asked Dr. Miller, “Would it be feasible for my Dad to get another job? He thinks that all he needs to do is get another job without stress.” Dr. Miller advised Lee that retirement was a must. He would not be able to work again. He could get another job and not remember what he was doing one day or why he was there. He recommended doing any of the things that we really wanted to do in the next couple of years.
Even though I was expecting to hear something like Alzheimer’s, it was still mind numbing to actually hear it. Dr. Miller asked if Lee would be willing to make a video for students. He wanted to demonstrate a highly functional, articulate younger than usual person with Alzheimer’s. Lee readily agreed.
We went back to the hotel and called our daughter. Even though she too knew the probable outcome, she was in tears. We were all both physically and emotionally drained. The next morning Eric headed back to New York and we started the four hour drive home. We talked a little but were really feeling the weight of the diagnosis and lost in our own thoughts.
Forward to today: On most days, I understand and accept the diagnosis. Some days, however, I wonder if there’s been a mistake. For a brief, shining moment our world seems normal. Then in the blink of an eye, we’re back in the reality of the situation. But while Alzheimer’s complicates our lives, it doesn’t end them. We try to live more in the present and to educate ourselves as much as possible about the disease. Knowledge helps us cope. We attend a support group for people with early-stage Alzheimer's and their care partners, and we volunteer for the Alzheimer’s Association whenever possible. They give so much too so many that we like to give back whenever we are able.
Read Lee's experience receiving a diagnosis of younger-onset Alzheimer's.
Blog author Val Ferrero is a Senior Admissions Advisor with California Polytechnic State University in San Luis Obispo. In 2008, Val’s spouse Lee Ferrero was diagnosed with Alzheimer’s disease. Since that time, Val has committed herself as a care partner and advocate in the fight against Alzheimer’s. Val and Lee have been married for 41 years and together have 2 children and one grandchild.