"When You Took Care of Your Mom, You Stole My Joy"

“A doctor from Brazil called me to talk about ‘purpose.’ This doctor’s mother was caring for his father even though she was incapable of doing so. Yet she refused to let anyone else help. The doctor/son was more than frustrated with his mother until he hit on an idea: ‘Mom, we need some work done at my office but it’s very confidential. Only a family member can do this. Can you come to my office three days a week and work for us?’”

Linda Burhans, who consulted with this doctor, continues her story: “So the doctor says, ‘But, Mom, to do this we need someone to take care of Dad when you’re here.’ And the mother replied, ‘Oh, that’s no problem.’ So the doctor lined up a professional caregiver for those three days. His father is being well taken care of while his mother is feeling useful at his office.”

“The doctor’s parting words to me were, ‘I love you, Linda.’”

Linda lives in the Tampa Bay area and styles herself as “The Gal Who Cares for Caregivers.”

“I want to be the resource, the educator, and the shoulder for caregivers. And I want to help caregivers find a purpose for their loved ones,” Linda tells me.

“I’m really big on finding purpose. I talk a lot about it.”

She started thinking about helping other caregivers after a friend confronted her: “Linda, when you took care of your Mom, you stole my joy.”

“What do you mean?” asked Linda, puzzled.

“I wanted to help relieve you, but you wouldn’t let me!”

Linda Burhans gives caregiving talks throughout Tampa Bay; leads support groups; offers individual coaching to caregivers; has written two books, including Connecting Caregivers: Answers to the Questions You Didn’t Know You Needed to Ask; and produces a weekly hour-long radio program called Connecting Caregivers on WTAN AM-1340 and FM-106.1, which are live-streamed online and on her website. (Full disclosure: I’ve shared our family’s story twice on her program.) And this spring she starts a speaking gig with Arden Courts, which has 50 memory-care and other assisted-living communities around the country.

Linda (center) broadcasting from a local bowling alley

Linda (center) broadcasting from a local bowling alley

Linda hasn’t always been a caregiver’s caregiver. Before caring for her mother with stage IV colon cancer in 2006-2007, she’d done almost everything but. Self-taught in bookkeeping and finance while living in the New York area, she says she moved up the business ladder step-by-step, from payroll clerk until finally serving as chief financial officer for the Breitling luxury watch company’s U.S. division. From there she followed an entrepreneurial itch, starting three companies in New York and Tampa Bay, where she moved in 2000. That itch ultimately evolved into Linda’s mission to caregivers.

“Of all the situations I’ve encountered, the toughest ones I’ve seen are when caregivers isolate themselves and their loved ones and are unwilling to accept help. It’s very sad and it’s a dangerous situation. She calls it the ‘AAA Dilemma’: Caregivers won’t ask for help, they won’t accept help, and they don’t acknowledge their own needs.

With her New York accent, Linda peels off caregiver stories faster than I can write. So I’m going to let her share these stories about ways caregivers have found meaningful activities for their loved ones and how caregivers can seek help. If you’re an overworked, exhausted caregiver—as most of us often have been—the intent is to let these stories spark ideas that you may apply to your own situation. Some are simple, others a bit more complicated.

Here are more of Linda’s stories…

Story 1: Two caregivers in my support group were taking care of their mothers with dementia all day, every day. They hit on the idea of swapping out. One took care of both mothers on Tuesdays, and the other did the same on Thursdays. Then on Fridays all four went to lunch and the movies. These breaks were invaluable to the daughters.

Story 2: Another woman’s mother with dementia had been a seamstress. “How can I find something meaningful out of that experience?” the daughter wondered. Bingo. She bought 500 buttons of different sizes and colors and asked her mother to sort these buttons into the same size and color. It took her several days and then the daughter took the assortment and mixed them all up again, repeating the request. Her mother stayed engaged and focused while the daughter carved out precious time for herself.

Story 3: This one is about Linda Burhans and her mom, Jo McCauley, who was living with cancer and dementia. “What can I do to help?” her mother would often ask. Linda: “Would you help do the laundry, Mom?” “I don’t want to do that.” Linda: “Mom, could you do these dishes?” “I don’t want to do that either.” Finally, Linda asked herself, “What did Mom do most of her life that she enjoyed?”

She’d been a legal secretary and loved it. So Linda bought 500 envelopes and letterhead, wrote a fake letter and printed 500 fake address labels, asking her Mom to stuff them for her. She jumped at the idea and did so while watching ‘Wheel of Fortune.’ “It took Mom about a week, and then we repeated the process. Mom was so proud when she handed me the completed envelopes.” Soon, Linda hooked her mother up with a local chamber of commerce to help stuff its monthly newsletter. “This was the best $20 I ever spent.”

Linda interjects: “As caregivers, ask yourseves: What did your loved ones do that they really liked? Then figure out some task that would be similar.”

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“It’s also important,” she adds, “for a caregiver to draw up a list of what they really need, and ask friends and family to help with those.”           

Story 4: There’s the caregiver, for instance, who had only one item on her need-help list. “I’d like to nap in the afternoon from 2-4. That’s what I told a friend who asked how he might help.” The friend jumped at the chance and hung out with her husband one afternoon a week. That friend led to another. “Now I’m napping seven days a week. And my husband visits with seven different friends who had stopped coming to see him!”


Carlen talking: As Linda rattles off her stories, I’m taken back to the 17 years I was caring for my wife Martha with early onset Alzheimer’s, from 1997 to 2014. (She was 50 at the time of diagnosis.) I wish I’d thought more specifically about what Martha had loved to do in her prime. I knew she loved to dance and sing and play tennis, which we did occasionally. Martha surprisingly took to art, which she’d shown no interest in previously. Reflecting back, I wondered what activity Martha could have done consistently that echoed her earlier interests but didn’t have to involve me. I came up short on ideas.

But knowing now what I know, I would have asked our children and Martha’s best friends to help me with this question: What things would be meaningful and of interest for Martha today, given her limited skills?  Together, I’m sure we would have come up with something.


Story 5: Says this daughter: “Ever since Mom died, my Dad just sat in his chair, depressed. The doctor prescribed an anti-depressant, but even with that Dad continued to sit there paying little attention to anything.” Frustrated, she finally remembered her father had built big model ships as a youth and into early adulthood. But his hands had become too arthritic to build such ships, so she bought some wooden model cars that he could paint and assemble. She and her father then took the completed cars to nursery schools, child day cares, and elementary schools, even shipping some out of town.

“Our house became so joyful. Sometimes kids would Skype with him, or send him thank you notes.” By the time of his death, her father had painted, assembled, and given away 40 dozen model cars. “What I spent on those cars was cheap compared to what we would have paid for the anti-depressant meds.”

The caregiver’s caregiver

The caregiver’s caregiver

One final story: At a caregiver’s support group, one man asked Linda, “Did you ever hear that song ‘King of the Road?’ Not long after it came out, my wife wrote a song called ‘Queen of the House’ but never copyrighted it. Someone recorded it and sold that song.” At the time of this conversation, his wife was living in a nursing home, where she’d found a new boyfriend. As you might expect, the husband had a hard time accepting this newfound relationship.

Linda, along with the nursing home staff, decided to invite a local musician to entertain the residents. “We figured out a way for the boyfriend to be gone for the day. And we invited the couple’s children to come.” After a few songs, the musician asked for requests. Linda had planted someone to request ‘King of the Road.’ As he listened, the husband said, “Oh, I wish I could hear ‘Queen of the House’ again.”

The musician soon honored the husband’s request. Nodding off throughout, his wife quickly awoke when she heard her song. He looked at her; she looked at him. Then he invited his wife to dance, and they did, ever so slowly. They hugged and kissed for the longest time. The wife, who rarely talked and then only with a mumble, looked directly at Linda and in a clear voice said, “Thank you. I love you.”   

Linda closes our conversation with this thought: “Figuring out what can give your loved one purpose and meaning is so much better for everybody…caregivers and loved ones alike.”

Thank you, Linda, for sharing with us what you’ve found to work for yourself and for so many other caregivers.


PS1My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be ordered from any bookstore or found on Amazon. I share our family’s 17-year odyssey of living with Alzheimer’s. My high-energy wife Martha was 50 when diagnosed, I was 52. Our children were in high school and college.

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PS2 As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.

PS3 I pasted nearly 200 Alzheimer’s stamps on my holiday card mailing. The net proceeds of this 65-cent stamp go to the National Institutes of Health for Alzheimer’s research. As of December, 13 months into its circulation, 5.4-million stamps have been sold, raising $771,000. Join me and thousands of others and Help Stamp Out Alzheimer’s.