Today was a good day.
During a conversation with her daughter, Elizabeth Huebner announced, “I’ll be so glad when I can get back to crocheting. Mary, do you have time to get that out for me today?”
Mary Peek was delighted her 93-year-old mother remembered that she had been crocheting a baby blanket before she got sick — before her mind at times became confused.
This was in stark contrast to the story Peek shared recently during her first New Reflections meeting at the UT Physicians Center for Healthy Aging, a medical practice of the McGovern Medical School at UTHealth. There, sitting in a circle with almost a dozen others who care for loved ones with memory loss, dementia and other chronic illnesses, she talked about a not-so-good day.
Her mother was taking a new medication that seemed to be helping control hallucinations. “She seemed OK. When I asked her, she said, ‘Oh yes, Mary, I’m OK,’” Peek said.
Appeased by her mother’s response, Peek made a quick trip to the drug store. During the brief period she was gone, her mother became so confused she told someone on the phone that her daughter was on the floor, dead. Peek came home to find emergency vehicles outside the house and firefighters rattling the gate, insistent that they get in to help a bedridden woman who was all alone with her dead daughter’s body.
As Peek told the story to the group led by Fran Floersheimer, a geriatrics social worker who specializes in dementia and brain health, she presented it as if she were the headliner at a comedy club. Her audience was in stitches as she regaled them with details of trying to explain to the nice neighborhood firefighters that, yes, she was very much alive. This was just an unfortunate side effect of her mother’s aging mind.
“When we got inside, mother seemed fearful. The firefighters held her hand and said, `Well, we can see everything is OK,’” Peek said. “Then she wanted them to stay. `Mary, go get these nice men some coffee. Mary, do we have any cake?’”
Peek can laugh about it now, but she admits this not-so-good day – as dark and sobering as it was – is what led her to the New Reflections group. She realized this was the new reality for her and her mother. And Peek knew she needed support. There may not be many more good days when Huebner’s mind is clear enough to remember that baby blanket she still needs to finish.
Reflecting on the past, embracing the future
As the social worker at the Center for Healthy Aging, Floersheimer provides one-on-one support to each family. During those individual sessions, she invites them to participate in a unique group meeting designed to help them cope with the challenges of caregiving. New Reflections, part of the center’s holistic approach to care, is held the second Thursday of each month for caregivers of patients.
“We need to ensure that caregivers have the support they need, because they are a vital part of their loved one’s health care team,” said Carmel Dyer, M.D., executive director of the UTHealth Consortium on Aging, founder of the UT Physicians Center for Healthy Aging and a geriatrician who cares for Peek’s mother and other patients at the center. “We know that without a support system in place, caregivers are at risk for depression and what is known as caregiver fatigue. We need to give them a safe place to talk about their frustrations – their realities – so that they can cope in healthy ways.”
Floersheimer said the purpose of New Reflections is to share personal experiences, listen to how others cope and to be an emotional safety net for one another. “As a group, we discover how we can help to provide the best care for our loved ones and learn different techniques for coping.”
Floersheimer serves as the facilitator. As group members share their experiences, she prompts them to reflect on the past, focus on the present and plan for their families’ future. Throughout the meeting, she provides nuggets of advice and tools they all can employ when they return home to loved ones with fading minds and failing bodies.
“For every negative, find a positive,” she tells them. “Be courageous and confident. Remind yourself, `I’m doing the best I can.’ Focus on what you can do, because that is all you can do.”
When one participant shared that she could never put her mother in a nursing home, Floersheimer said kindly and firmly, “Take `never’ out of your vocabulary. Things can change quickly. What you think you may never do today is the right thing to do tomorrow. You need to be open to all the possibilities.”
Consistently, Floersheimer reinforces a message of self-care. “Recognize your personal worth,” she will say. “Accept help.”
For Peek, that means finding time to attend not only New Reflections but also gardening and nutrition classes at UT Physicians Community Health & Wellness-Victory near her home. For others, it may be weekend getaway or take-out on a day when there simply is not enough energy to cook.
Dyer said the New Reflections group is a key component of the integrated care the UTHealth team provides at UT Physicians Center for Healthy Aging. Inviting caregivers to share their experiences and emotional journeys can be just as important as the health care their loves ones receive at the clinic.
When Colleen Jernigan’s mother became a patient of Faith Atai, M.D., and was diagnosed with dementia, Floresheimer invited Jernigan to join the New Reflections group. “I didn’t have any idea what we would be up against,” Jernigan said. “When Fran mentioned the support group, I thought, no, that’s not for me. I’m not going to go.”
She quickly learned that caregiving sometimes comes with an overwhelming sense of isolation. “Now, even if I go late to the group, I go. There is power that comes from the group,” Jernigan said. “Sometimes they are listening to you, and sometimes you are listening to them and learning from them.”
At the recent group meeting, just weeks before her own mother died in her sleep, Jernigan listened as Peek told her story. Jernigan nodded with empathy, laughed at the dark humor and found comfort in knowing she was in a room filled with people like Peek who truly understand the weight of tremendous loss and sorrow that can accompany the caring for a loved one with dementia.
“The support we can provide one another in the group becomes so important. We need one another, and we need Fran,” Jernigan said. “She just loves us at a time when we really need to be loved.”
— Meredith Raine, UTHealth