What It’s Like to Care for a Partner With Alzheimer’s

Every day, Catherine Friedman, 75, wakes up before her husband Joel, 78, to get ready for her job at a nursing home. She prepares his medications, checks his blood pressure, and then walks to the deli for his fresh bagel. She keeps her doorbell camera notifications on in case he tries to wander outside the house.

Cathy is Joel’s primary caregiver as he navigates Alzheimer’s disease, which he was diagnosed with in January 2020. The couple met 57 years ago on Wall Street and married just one year later. They’ve lived in Kensington, Brooklyn, for the past 30 years.

“People ask why I stay, and I say because it’s for better or for worse,” Cathy says.

Still, caregiving presents many daily challenges.

The Shock of Diagnosis: ‘I Had No Idea What to Expect’

Alzheimer’s is an incurable type of dementia that causes a decline in cognitive function, says Zaldy Tan, MD, MPH, the director of the memory and healthy aging program at Cedars-Sinai Medical Center and a professor of medicine at the University of California in Los Angeles.

But just because the disease is common doesn’t mean caregivers are prepared for it. “When Joel was first diagnosed, I was lost,” Cathy says.

His grandmother, mother, and sister all had Alzheimer’s. “But I didn’t think of him in the male line as being at risk,” Cathy says.

That changed one day when Joel was sitting at the table and couldn’t focus on the words he was reading. “He used to read the Times front and back,” she says. “I knew something was wrong.”

The first few weeks after his diagnosis were difficult. “In the beginning, I had no knowledge of what to expect,” Cathy says. “I saw Alzheimer’s in the nursing home, but now it’s you.”

The Alzheimer’s Association’s 24/7 hotline helped her pull through. If Joel became aggravated, for example, she would call to find out the best way to respond, which was usually to leave the room for 15 minutes.

Reaching out for help like this is essential for caregivers, says Dr. Tan, author of the new book What to Remember When You Are Forgetting: How to Live and Thrive With Memory Loss, Alzheimer's, and Other Dementias. “I don’t think anyone is completely prepared for it,” he says.

Coping With Loss: ‘Every Day Is a Little Worse’

A few years into Joel’s diagnosis, the couple had settled into a rhythm, but the disease continued to disrupt it as Joel’s symptoms changed. “Joel doesn’t recognize the house half the time,” Cathy says, which wasn’t the case at first. After living happily there for three decades, she found it upsetting to know their home had become an unfamiliar source of stress for him.

The hardest part of Joel’s memory loss for Cathy is that she doesn’t know what to expect. “Every day is a little worse, and every day is different,” she says. The couple still shares a bed, but sometimes he rolls over and asks who she is or tells her to get out.

Seeing Joel slowly forget the people and passions he once loved can make Cathy sad. During the first three years of Joel’s diagnosis, she left signs around the house to remind him of who she was and to avoid the stove. “But now he has cataracts and can’t read,” she says. “It’s the biggest loss because he would sit for hours reading in the backyard. Now we watch the news every night, and he usually doesn’t understand.”

Cathy has less autonomy, too, since she can’t leave him alone. When she wants to run to the laundromat or get her nails done, a member of her family has to be available to stay with Joel.

These restrictions can impact Joel and Cathy’s ability to connect. She can’t ask him if he wants to do things spontaneously, since a break from routine can cause him to become agitated. They can’t walk around Prospect Park, which they used to do every day, because of Joel’s confusion and mobility issues, Cathy says.

“Another advantage of early diagnosis is that you can talk with your partner at the early stage while they still can, and ask what their preferences are,” he says.

Routines: ‘My Comfort Zone’

Keeping a schedule helps Cathy cope. “I have a routine for medications and a card with everything he takes and when written down,” she says. “Once a week, I fill the pill boxes up.”

In addition to her morning regimen, Cathy has a nighttime procedure that gets them both in bed by 9. “Staying in my routine gives me my comfort zone and helps him not get aggravated,” she says.

The predictability of these habits also makes caregivers less likely to miss tasks, Tan adds. “Plus, psychologically, it helps the person with Alzheimer’s stay oriented with the day-night cycle. If that’s disrupted, they might wake up at 3 a.m. thinking it’s time to go to work.”

A Network of People Who Can Help Is Critical

Caregiving can have a major impact on mental and physical health. Caregivers may get poor quality sleep because they’re worried about their partner wandering, and exhaustion or financial strain can cause them to withdraw from friends, Tan says. “Multiple studies show that caregivers of people with Alzheimer’s have higher rates of depression, isolation, divorce, medical issues, and even dying because of the stress of caregiving,” Tan says.

Cathy manages the stress of caregiving by relying on a health aide while she’s at work and leaning on her adult children and grandchildren to give her breaks for errands or a pedicure.

“A network of people to help is so important for self-care,” Tan says. “Adult children, neighbors, church community, medical professionals, social workers — you need a lineup of people who can provide respite if you need to go to your own appointment, take a walk, or watch a movie to decompress.”

Of course, speaking to a social worker or joining a caregiver support group can help, too, Tan says.

Finding Hope: ‘He Still Has His Sense of Humor’

Alzheimer’s is life-changing, but that doesn’t mean caregivers and their partners can’t experience joy. “Joel makes me laugh,” Cathy says with a smile. “He sleeps a lot more, but he still has his sense of humor.”

Her family, especially her kids and grandkids, are another great source of comfort. Not only do they step in to help with Joel, but they also spend time with Cathy. Most recently, she and her grandson saw the play Les Misérables together.

Plus, even though Joel can get irritable or not recognize her, Cathy still feels loved. “The reason I’m here is because I do love him, and he tells me every day constantly how much he loves me,” she says.

Every year, Cathy attends an Alzheimer’s march with other patients and caregivers, and that display of unity helps her keep going, too.

“I hope they find a cure for this,” Cathy says. “I worry for my kids and their kids. Until then, I take it one day at a time.”