Joe Fabeck’s wife, Diane, hadn’t been sick in the 54 years the Colorado Springs couple was married. She never went to the doctor. So when she began showing the first symptoms of Alzheimer’s disease, he didn’t pay much attention.
“I thought she was teasing me,” said Fabeck. “She’d been having problems for a long time, but she wouldn’t admit it.
When a complete physical didn’t reveal any obvious reasons for Diane’s memory issues, Joe eventually brought her to visit a neuropsychologist, but Diane emerged without a diagnosis and that allowed her to continue to put up a brave front.
“Finally, one day I walked into our bedroom and found Diane crying on the bed,” said Joe. “’I’m going to be just like my mother,’” she told me.
Diane’s admission helped Joe begin to take steps to get help, both for her and for him.
When Diane was finally diagnosed with Alzheimer’s five years ago at age 70 after several years of memory-related symptoms, Joe was already two years into chemotherapy treatment for cancer. But he pressed on, serving as his wife’s caregiver. He alerted his neighbors in case she might wander. He would discretely hand out preprinted cards to people they would encounter to alert them to potential behavioral issues. And while she was still driving, he would follow her at a distance to ensure she was safe.
Even in the midst of the tragedy of Alzheimer’s they would find moments to laugh. One day she escaped from the house and took off in the car. Joe alerted the police and they located her and pulled her over. Diane thought it was a special occasion when the nice man in the sharp uniform and the fancy red and blue flashing lights came to see her.
Connecting with Alzheimer’s professionals
Eventually, Joe connected with the Alzheimer’s Association of Colorado and became familiar with the programs and services that are offered at no charge to people with the Alzheimer’s diagnosis and their caregivers.
“People don’t understand how valuable these programs can be,” he said. “I have benefitted from these educational sessions. I’ve never come away without learning something new. But it’s not just the programs – it’s the interaction and the connections you make.”
The sense of community among families with Alzheimer’s – particularly among caregivers – is a powerful connection. No one understands or appreciates the challenges of being a caregiver for a person with Alzheimer’s like another caregiver.
“There’s no way to explain this experience to anybody unless you’ve lived through it,” he said. “Patience is a key. It’s hard not to get mad. There’s no predicting the behavior. You never know what’s going to happen next.”
While the behavior of the person with Alzheimer’s can be unpredictable, the reaction of family members often is too predictable.
“A friend said to me: ‘when my wife gets better…’” Joe said. “She’s not getting better. My challenge is accepting that the Diane I knew is gone. She’s not coming home – ever.”
Finding the right care
At first Joe tried to care for Diane himself, and he got assurances from friends and family that they would be there to help him.
“Friends and family are ready to help – until you ask,” he said. “They have jobs and they have kids and lives of their own to lead. You need professional help, like Barb Caudle (Colorado Springs regional director of the Alzheimer’s Association) and the people she can help you connect with.”
Eventually, Joe added in support from in-home caregivers, who would spend three to five hours at a time with Diane at their home.
“Paid caregivers are great when they’re there,” he said. “They’re there more for the caregiver than for the person with Alzheimer’s because it truly is a 24/7 job and you need a break.”
Recently, Joe reluctantly made the decision to place Diane in a memory care facility where she could receive around-the-clock care.
“You don’t want to send away someone you’ve known and loved for 57 years,” he said, but the toll on him was becoming undeniable. Joe had seen a recurrence of his cancer, and was in need of a third round of chemotherapy, but felt he couldn’t afford to take time away from caring for Diane to tend to himself.
He notes that two women from his caregiver support group – both younger than this spry 82-year-old former chief operating officer who bought and ran two Colorado Springs restaurants after his “retirement” – recently suffered heart attacks from the stress of their caregiving responsibilities.
Maintaining a connection despite Alzheimer’s
Even as Diane’s Alzheimer’s continues to progress, the couple of 57 years still shares special moments.
“My wife knows she knows me, even if she doesn’t remember my name,” Joe said. “And she likes to look at flowers.” Joe would bring flowers from their garden at home, but as fall progresses, he’s stopping at the grocery store to buy fresh ones to ensure Diane always has a pleasant view.
Joe, who has become one of the leading fundraisers for the Colorado Springs office of the Alzheimer’s Association of Colorado, has one piece of advice for other families facing an Alzheimer’s diagnosis: take advantage of the free services the Association has to offer.
“After my first caregiver session, I said ‘this is for me,’” he said, noting that Diane also enjoyed the programs for persons with early stage Alzheimer’s. “Caregivers need this.
“Caregivers have a reward coming,” he said. “When we die, we go straight to heaven.”