Interview with Lisa S.

Content Warning: This post mentions suicide and may be triggering to some readers. 

To celebrate the Center's 25^th anniversary, we continue our interview series, hearing from caregivers who are part of our community. This month, I sat down with Lisa S. to hear about her life caring for her husband with Alzheimer’s Disease and all the challenges that come with it. Lisa was directed to the Center through a referral from the Alzheimer’s Association. Her first exposure to the Center was with a caregiver consultation with our Assistant Director, Becky Zinn-Caufield. Lisa said “I had my first meeting with Becky, and I loved her. I knew it was the right place for me. It was convenient, close-by, it felt right.” Regarding our 25^th anniversary she mused, “When I think about the Center doing this work for 25 years, I think wow, I’m just one person and if you multiply that by how many people they have helped over 25 years?! A big WOW!”

HER STORY

Lisa started to notice something was off with her husband, a retired Minneapolis teacher, when he started leaving the stove on, she found strange things in the refrigerator and observed some overall forgetfulness. “I was wondering, is this just normal aging? After all, Dan is 18 years older than I am. He is 77 and I am 59. I knew everyone was different, but it was much different than what I had experienced with my dad.” Her husband was officially diagnosed with Alzheimer’s Disease just over three years ago. She remembers the normalcy and profound nature of that day, going to a garage sale after the appointment before returning to work despite the life altering diagnosis. Her husband tries to live as normal as he can and doesn’t spend a lot of time discussing the disease. Conversely, Lisa immediately began researching all she could. She found a support group (here at the Center), a therapist, and bought numerous books. She notes that there came a point when she couldn’t read about the disease anymore, “it was depressing and too much, I have stacks of unread things at home now.” Reaching saturation and a point when emotionally you’ve had all you can handle is normal. It can be like realizing you’ve consumed a year’s worth o sugar after the holidays. Waiting until you feel like you can stomach more is a healthy response.

RELATIONSHIPS & CHALLENGES

Lisa and I talked about the ways her husband’s condition affected her relationship when she shared an important lesson learned with the help of her therapist. She noticed she had been building resentment waiting for her husband to complete a chore while simultaneously feeling the weight of the mounting responsibilities being transferred onto her plate. She says she now leaves time for him to complete the task, stating that it isn’t in the timeframe she is used to but if it isn’t getting done, “I just do it now—it’s easier on you, as the caregiver. I no longer want to play the role of the parent, trying to teach him a lesson or waiting to see how long it will take him to do something on his own. That dynamic was too stressful for me. Letting go of that has made things smoother—for both of us.” Accepting it as the new normal allows her to have less conflict and more peace. At times she feels more like a caretaker than a wife. She misses their relationship. The way it was.

Lisa was very candid about some of the challenges she has had to face with her husband.  One of the most difficult issues they encountered was the loss of his driving privileges. This was very hard on him and made him feel like he was losing his freedom. It also added more duties to Lisa’s already full plate. She shares the story below:

I was concerned about Dan’s driving skills. I rarely rode with him—choosing instead to drive whenever we were together. The few times I did ride with him, I noticed obvious and dangerous misjudgments. Our son noticed them too. I asked Dan many times to take a driver’s test, but he refused. He wouldn’t schedule one through Courage Kenny, saying it was too expensive and insisting he was a good driver.

Eventually, his neurologist required the test, and only then was it scheduled. The three-hour exam happened while I was teaching. My 91-year-old father took him. Dan didn’t pass—not on cognitive tasks, not on reaction time, not on actual driving through the city and construction zones.

It was devastating news for Dan. For our son and me, it was a mix of relief and sadness. I had assumed he would be given restrictions, not lose his driving privileges entirely. Dan was upset with me. He believed I had forced the test, not understanding it had come from his doctor. He refused to share the results with me.

Dan’s father had Alzheimer’s. He died by suicide at 85 on the day his car keys were taken. That morning, after a doctor’s appointment, he ended his life while the family was outside raking leaves. Dan was the one who found him. So, the day Dan lost his own license, all I could think about—while teaching my students—was: What if? What if Dan couldn’t handle the news? What if the loss of freedom triggered something unbearable?

Those fears haunted me for months. I’d come home to a dark house—no lights on—and feel my anxiety spike. I started calling more often during the day to check on him. But Dan has trouble using his phone, or misplaces it, and when I couldn’t reach him, my worry only grew. The stress was constant. Ironically, the only time I found relief was when I was immersed in the care of my kindergarteners. Teaching was, and always has been, my breath of fresh air—despite requiring me to care for 30 five-year-olds.

Months later, at a couple’s therapy session, I finally shared my fear. Our therapist, with gentle but clear directness, asked Dan the question I had been too afraid to ask: “Have you ever thought about ending your life?” Dan looked straight at me and without hesitation said, “no” he has a good life. That he loves his life.

In that moment, a weight lifted from my shoulders. While the concern still creeps back now and then, that conversation brought me immense relief. The therapist’s willingness to ask the hard question—so directly—was exactly what I needed.

Dan’s older sister is also living in memory care with a similar diagnosis. It’s a reality that feels both heavy and inevitable. But for now, we keep moving forward—one moment at a time.

SUPPORT GROUP

Next, I asked her about the benefits she has gotten from the support group. She revealed, “I learned to get things taken care of before you need it done.” Power of Attorney was put in place, utility bills were put in her name, and she made sure she knew what prescriptions Dan was taking. She took on the motto to be proactive, rather than reactive. Lisa loves the education session followed by support group format on Second Saturdays which provides her an opportunity for encouragement and learning. “I feel bad when I miss a Saturday because I get something out of everything (all education topics)! I care about the group members. They are honest, welcoming, I’ve made good connections, and the facilitator acknowledges everyone, gives them opportunities to talk without pressuring them, and redirects well when needed.” She continues, “and the laughter— there is more humor than tears. If it was too somber, I wouldn’t be there.”

ADVICE

Lisa wants caregivers to know that it is okay to prioritize living your life and being with friends. She takes advantage of the monetary allowance she receives through long-term care insurance (supervision, cleaning, and meal preparation by her niece), knowing that someday her husband may need more care in a residential setting. She finds herself making appointments, looking up benefits, researching, and doing paperwork every break she has during her school day teaching kindergarten. She juggles caring for her 19-year-old son and aging father along with her husband and admits it can be exhausting. She wants to urge other caregivers to “take care of yourself—I do. I have to choose where I am putting my energy,” she observes that some types of caregiving give her energy while other types drain her.

Witnessing the progression of the disease has been especially hard on their son. She shared that one day, from his freshman college dorm, he sent a heartfelt text: “When will Dad not recognize me?” It broke Lisa’s heart. When Dan was first diagnosed, Kaj was in tenth grade. Lisa said, “I immediately began searching for a support group specifically for teens who have a parent with Alzheimer’s. I came up empty. Despite my efforts, I could not find anything locally or even virtually that fit. I believe this is a deeply underserved group—teenagers and young adults navigating the decline of a parent need a safe place to talk, to share their fears, and to be with others who understand what they are going through. They deserve that space.”

EXPRESSION

Normandale Center for Healing & Wholeness often uses creativity as a resource in our programming for caregivers. Lisa found an opportunity to try her hand at writing during our education session with Patricia Hoolihan in November of last year which sums up her experience well:

It Started with a Band-Aid

A used Band-Aid on a shared plate of hummus.

My husband put it there.

It surprised me.

It shocked me.

It embarrassed me in front of our server.

At the table, I asked him - quietly but irritated – why he had taken off his Band-Aid and placed it on the neatly arranged vegetables we were still eating.

It led to a quiet argument in the booth where we sat.

I was appalled.

He believed that he had done nothing wrong.

I stood up. I left.

A half-glass of Chardonnay remained on the table.

Band-Aids are a temporary fix. Not meant to cure or heal, only to stop the bleeding. To protect – just enough.

But in this almost three-year journey since my husband’s Alzheimer’s diagnosis, I’ve come to understand:

There is no cure.

There is no protection.

There is no Band-aid.  

Lisa S.

Caregiver, Mom, Teacher 

Thank you, Lisa, for sharing your caregiving journey with us. Your honesty and laughter are a gift.

If you or someone you know is in emotional distress and you are concerned about suicide you can contact the 988 Lifeline. Confidential support is available 24/7 for everyone in the United States and its territories.