Accuracy Matters

By K.J. Bannan

When a loved one can’t find the answers, a caregiver can fill in the gaps

Anna Falkenstein’s husband went into cardiac arrest six years ago while walking outside. He pitched forward as he collapsed. Bystanders started CPR, but his brain was without oxygen long enough to cause an anoxic brain injury and major memory loss.

“When he woke up, he had no idea who he was, who anybody around him was. He totally lost all of his long-term and short-term memory,” Falkenstein says. 

As a result, he often forgets or misrepresents his symptoms at doctor visits. Falkenstein, who lives in Virginia and attends every doctor visit, helps her husband answer questions. However, she doesn’t just blurt out answers for him, she says. 

“From the beginning, his doctors taught me the most important thing: We still have to respect the patient and give him his dignity,” she says. “All of them still ask him the questions. “I’m there. I let him answer. And then I supplement gently.” 

Finding a Balance

Teri Dreher, principal with NShore Patient Advocates, says Falkenstein’s strategy works well. The patient’s mental health is just as important as their physical health. It’s important for them to feel like they have a say in their care even if they have dementia or forgetfulness due to aging. 

She suggests jogging the person’s memory without confronting them. “You don’t want to embarrass your family member at all,” Dreher says.

Stephanie Erickson, a clinical social worker and author of the book Plan for Aging Well, suggests talking to a loved one proactively about any age-related changes such as memory loss, mobility issues, or health concerns. You can start by bringing up an upcoming doctor visit when you’re both still at home or in another relaxing setting. “Proactive conversations allow older adults to share their expectations, fears, and hopes for any unforeseen age-related changes, which in turn helps caregivers best support them,” Erickson says. The conversation can set expectations, and it gives you the chance to explain why it’s important for you, as a caregiver, to provide input to doctors.

“If your loved one allows you to come into the exam room, there’s a level there of trust already. It can be as easy as saying, ‘I’m not trying to hurt you or be argumentative. I’m not trying to disrespect you. My experience, my observations, are very different from what you’re saying during appointments sometimes, and I want to help you advocate for the treatment that you want and need,’” Erickson says. 

If the loved one resists, she adds, “The caregiver can share his or her concerns via email or fax in advance of the visit and ask the physician to evaluate these issues.”

It’s helpful to schedule time before each appointment to go over questions that you know the doctor will ask. Discuss answers together, writing them down and bringing them with you to appointments. Patients and their family members should review questions that the patient wants answered, and stress the importance of being brief. The top three most critical questions need to be addressed first. This is important for all patients and caregivers, Dreher says, as doctors get busier. 

Yet, even the best plans can go awry. You and your loved one might agree on everything prior to the appointment, but once you’re in the exam room — whether due to stress, memory lapse, or something else — your loved one may suddenly get upset or contradict what you’ve previously agreed on.

In those situations, Dreher suggests reminding the patient about your previous discussions. “You might just gently say, ‘Well, didn’t you tell me yesterday that you had x, y, and z symptoms after you took the medicine?’” 

If the patient’s emotions escalate, let it go in the moment, and ask the doctor or nurse for a few moments of their time alone at the end of the appointment. Use that time to correct the missing or wrong information. 

Over time, when caregivers and patients work together to gain acceptance and understanding of what’s going on, appointments become easier, Falkenstein says. 

“At first, [my husband] didn’t like that I had to correct what he might have said, but we’re almost six years in, and he’s glad that I’m there to let them know what appointments we’re doing for cardiac stuff or how his symptoms are,” she says. 

After years of working with her husband, the couple has realized that having her confirm information that he may not remember is the best course of action — and leads to the best outcome for him, she says.

Originally published in the Summer/Fall 2023 print issue.