Donor Stories

Alzheimer’s fund supports caregivers

February 1, 2024

By La Crosse Community Foundation

From supporting caregivers to becoming one

Kathy Lucey has always been a caregiver, caring for her elderly parents, mother-in-law, and aunts. She knows it can be onerous, lonely work, made even more emotionally taxing when the object of your care is one of the people you love most in the world. She has firsthand experience with that.

Kathy spent her career working with Bethany Lutheran Homes and retired in 1999 as associate executive director. When she started her career, Alzheimer’s disease was still relatively new to public consciousness; but during her tenure, BLH developed many programs to benefit people impacted by the disease. Kathy also joined local and state Alzheimer’s boards.

Caregiving hits home

Her personal experience with dementia began when her brother was diagnosed with frontotemporal dementia disease in 2001. Kathy watched — and helped where she could — as his cognitive abilities faded until he was no longer the person she’d known her whole life. Right after he passed away, Kathy’s husband, Jack, was diagnosed with aphasia. A couple of years later, he was diagnosed with Alzheimer’s disease.

As Kathy began her journey with Jack, she could draw upon her experiences in her work life but realized others weren’t so fortunate. So, in 2018, Kathy established the Kathy and Jack Lucey Family Fund for Alzheimer’s to help individuals who would have similar challenges with their loved ones.

Caregiving can be difficult. But with the knowledge Kathy learned from her career, along with watching her husband and brother with dementia, she realized it was an even greater challenge and that families needed help. Having a fund at the foundation allowed Kathy to help nonprofits that she felt would benefit in the greatest way.

Loneliness sets in

Even with all her experience, knowledge and preparations, Kathy, with the support of her and Jack’s daughters Jada and Erin, continued the journey.

“It’s a day-to-day disease. You get up in the morning and wonder what the day will be like. You want your loved one to keep their dignity, so you try to find that even space between helping and not making them feel like you’re doing everything for them,” she says.

“All diseases are bad,” she adds, “but with most other diseases, you have the means to communicate. With people who are well into dementia, you don’t have that. You’re alone in making decisions. It all falls on you — finances, care, family, anything that might pop up. That’s gone. Your partner is in a different world. I felt alone, but he was still here.”

Finding purpose in helping others

As Jack was in a memory care facility, their fund provided grants to help the residents with entertainment and outdoor activities. Jack passed away on April 24, 2022, and the memorials were directed to the Kathy and Jack Lucey Family Fund for Alzheimer’s. His legacy will live on with the donations from his passing.

The Alzheimer’s fund

The donor-advised fund has supported numerous initiatives, including:

• A presentation for families and professionals by Gary Glazner, founder and executive director of the Alzheimers’ Poetry Project, sharing how to communicate with people who have dementia through music, dance and poetry.
• Another speaker addressing ambiguous grief because caregivers grieve throughout the journey.
• Educational books for caregivers and books specifically designed to help children understand the disease and how to communicate as their grandparent or loved one struggles with it. (They’re available at various libraries in La Crosse County and the Aging & Disability Resource Center.)
• Teepa Snow Dementia Training Kits that provide a six-week training program for caregivers to develop skills and strategies to better care for their loved ones.

“My purpose is very much wrapped up in helping others. Everyone leaves these events with a feeling of ‘It’s not only me.’ Helping people get through the journey is very important for me; it relieves some of the grief and loneliness.” Kathy says.

As Kathy reflects, she says her happiest memories were those when they were just together — those special times when we would start talking and have that connection. I want Jack to be remembered for being a great husband of 55 years, father, papa and friend. Even though he was a soft-spoken Irishman most of the time, he was very social and loved to be around people.