How to Talk to the Doctor About Your Elderly Parent or Spouse

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A frequent problem expressed among family caregivers is that their aging loved ones aren’t honest with their doctors. At home, they may gripe about intense pain, struggle to complete activities of daily living (ADLs) independently, or exhibit memory problems that lead to unfair accusations, but the moment they sit down in a doctor’s office, a change occurs. Like an actor on stage, the patient becomes animated and charming and has no complaints to report to their physician. What gives?

A Caregiver’s Experience With “Showtiming”

My mom was a supreme example. She fell in her apartment on a weekly basis and had memory problems. She was taken advantage of by unscrupulous telemarketers and suffered from digestive issues. However, whenever I took her to the doctor, all her hardships disappeared. What I called her “hostess personality” took over as soon as we would arrive at the office. While she may have complained of arthritis pain in the car on the drive there, the minute she had a chance to tell her doctor how terrible she felt, she became perkiness personified.

I’m not alone, either. A while back, a friend of mine took her mother to the doctor because she suspected her mom was in the early stages of Alzheimer’s disease. My friend sat dumbfounded as her mom charmed the socks off the doctor and seemed as quick as she had been 10 years earlier. Her mother denied having any health issues, especially those associated with memory. The doctor was too busy to run additional tests on someone who appeared to be “so sharp for her age,” so he signed off on some prescriptions and sent them on their way. My friend felt like banging her head against the wall.

Why Do Seniors Mislead Their Physicians?

While the reasons for a senior not being honest with their doctor are often multifaceted and difficult to pinpoint, fear, denial and a phenomenon called “showtiming” are usually to blame.

Fear

One reason our elders put on such a show for medical professionals is because they are afraid. They don’t want to face the reality of a bad check-up or a new diagnosis for many reasons. Hearing that one has heart disease, cancer, Parkinson’s disease or some form of dementia is devastating enough. But one of the most frightening consequences of such a diagnosis is a looming loss of independence. So, they put on their company manners, fail to mention or downplay their symptoms, and tell the doctor whatever sounds best in order to get out of there with the cleanest bill of health possible.

Embarrassment

Fear of embarrassment is also a powerful motivator. Research has shown that people of all ages hesitate to share complete details relevant to their health with their physicians out of fear of judgement and/or embarrassment. Seniors have a great deal on the line and want to retain their dignity, so they avoid to divulging information that makes it seem as if they are physically frail or exercising poor judgement.

Denial

Denial is a natural and powerful tool for humans. It often helps us get through difficult situations until we can emotionally wrap our heads around an issue and tackle it. In the case of our aging loved ones, when they come home from a doctor’s visit without any major developments, they’ve dodged a bullet. Whether or not it is a conscious attempt, many seniors gather and direct all their effort into that one appointment, and it’s often enough to convince a doctor or other professional who isn’t privy to their daily behaviors and routines that all is well. It also doesn’t help that healthcare providers are pressed for time and cut appointments increasingly short these days.

Dementia and Showtiming

Piggybacking off fear and denial, dementia can seriously complicate doctor’s appointments, leaving family caregivers utterly flummoxed and frustrated. Seniors in the early and middle stages of dementia sometimes use all their energy and what remains of their faculties to put on a rather convincing performance that they are fully alert and lucid. This phenomenon is commonly referred to as “showtiming.” The energy and concentration such an interaction requires usually leaves a dementia patient physically and mentally exhausted afterwards, sometimes for hours or even days.

The reasons for showtiming can vary, but fear and denial typically play a role. A very specific type of what many perceive to be “denial” is often to blame in dementia patients: anosognosia. This neurological condition is characterized by a lack of awareness of one’s own cognitive or psychological impairments. Changes in the brain render a senior with Alzheimer’s disease or another type of dementia incapable of recognizing their lapses in memory, loss of judgement and mood swings. Dementia patients with anosognosia will vehemently deny any memory problems or instances of poor decision-making despite being presented with concrete evidence of such. They may even deny other symptoms or health issues simply because they do not remember them.

Read: Anosognosia: When Dementia Patients Can’t Recognize Their Impairment

8 Tips for Talking to Your Parent’s Doctor

Fortunately, there are some tips and tricks that family caregivers can use to ensure doctors are well-informed while their loved ones’ dignity remains intact. Start with the following strategies, but keep in mind that effective tactics will vary depending on a senior’s personality and medical concerns.

  1. Get Proper Authorizations

    Keep in mind that few doctors will talk to you without an appointment, and you’ll need the proper HIPAA authorization and a valid medical power of attorney (POA) document to have a comprehensive discussion about a loved one’s condition and medical care. Have these three legal documents prepared and provide copies to all physicians involved in your parent’s care.
  2. Talk With Your Loved One Ahead of Time

    Explain that doctors these days respect and appreciate an educated patient. Our elders grew up in an age when doctors were put on pedestals and there was little meaningful patient-physician interaction. Reminding them that they have some power during these appointments may encourage them to be more honest and forthcoming.
  3. Identify Your Role as an Advocate

    Remind your loved one that you are on their side and that their safety and health are your number one priority. Try to establish trust. This isn’t always possible, though, since some elders become suspicious of everyone’s motives. All you can do is try.
  4. Ask to Talk to the Doctor One on One Beforehand

    Alert them to your loved one’s impressive acting abilities and discuss any symptoms and problematic behaviors you have observed at home. This could be an in-person conversation or a telephone call.
  5. Send Documentation

    Another option for communicating with the doctor is to write and send them a letter or email ahead of the appointment noting your concerns. This way, the doctor is prepared with the facts when you see them. They can then mention these issues in a tactful way, pursue additional testing, or suggest a referral to a specialist without revealing you as the inside source of information or being misled by your loved one’s version of things.
  6. Keep a Diary of Observations

    Consider attaching the notes that you’ve kept over a week or two to your letter that indicates the dates and times of new or worsening behaviors or health issues that concern you. Again, this will enable you to share detailed information with the doctor without blatantly contradicting or embarrassing your loved one during the appointment.
  7. Bring a Medication List 

    Make a complete list of every prescription, over-the-counter medication, herbal supplement and vitamin your loved one takes, including dosages. Instead of composing a list, some caregivers simply put all their loved one’s pill bottles in a bag and bring them to the appointment. This complete account helps the doctor spot drug interactions, troubleshoot adverse side effects and prevent overmedication.
  8. Keep Your Parent Involved

    Medical professionals are notoriously busy, but during the visit, make sure the doctor interacts with your loved one. Some physicians will look over their notes and then speak directly to the family caregivers, since it’s faster and easier to get straight answers to questions. However, you are there to support your loved one, take notes and contribute to the improvement of their care plan. Taking over the appointment will only build resentment and cause your loved one to shut down further. Yes, in some cases where an elder is no longer capable of communicating with the physician, their caregiver must take a more active role in appointments. Nevertheless, a senior still deserves the dignity of being treated as an adult patient and participating in their own care as much as possible, no matter how confusing or childish their behavior may sometimes be.

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Sources: Prevalence of and Factors Associated With Patient Nondisclosure of Medically Relevant Information to Clinicians (https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2716996); StatePearls: Anosognosia (https://www.ncbi.nlm.nih.gov/books/NBK513361/)

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