Wearing Many Hats as a Parkinson's Disease Caregiver

As a Parkinson’s disease care partner, I feel that I’m the "wearer of many hats." I find this metaphor perfectly explains the caregiver or care partner’s situation. The unpredictability of Parkinson’s requires caregivers to be ready to change into a new role at a moment’s notice.

I think it is very important for care partners to share an example of the "day in the life" with those that they trust. Here’s an example of the roles I take on to prepare for a visit to the movement disorder specialist.

Multitasking before a doctor's appointment

To make the appointment, I’m the scheduler with calendar in hand to schedule the appointment. Not to mention, I am a voicemail ninja navigating those prompts on the neurologist’s office telephone system!

The day before the appointment, I’m wearing my nurse hat, making sure we either have the prescription bottles with us or write down which medications need refills.

I’m also wearing my administrative assistant hat, making sure paperwork and forms are completed for the neurologist and notes are prepared so we can accurately relay the "goings on" for the last few months.

My role in getting to the doctor's office

On the day of the appointment, my nursing work starts early making sure all medications are taken on time to ensure that "on time" coincides with taking a shower and getting ready.

Next, it’s time to be the driver. My husband made the decision to stop driving 18 years ago. He made this tough decision on his own because he was afraid of endangering the lives of others and himself. I’m fortunate that he made this decision without having an accident and without being pressured by me.

Staying on top of medications

Upon arriving at the office building, I drop him off at the front entrance. Accessing the building is tough as parking is a premium. Also, just in case his medications may be wearing off, it is easy for him to enter the building.

As we are ushered into the exam room, I put my administrative/nurse hat back on by mentioning the medications that need refilling to the nurse.

What I do during the appointment

When the neurologist arrives, I put on my reporter hat. My husband takes the lead in answering the doctor’s questions and I’m the backup reporter in case more in-depth information is needed. I also raise any issues that I think are important in my husband’s care.

I’m the scribe too – taking any notes for follow-up items such as medication research, therapies, and more. Exam room visits are definitely a tag team effort on both of our parts. There’s so much that can be discussed from exercise, medications, physical therapy, nutrition – it’s too much for anyone person to remember!

Caregivers have to juggle so many responsibilities

I’m very aware that Parkinson’s disease is slowly adding hats to my closet as time marches on. Neither of us likes this fact. I do my very best to educate myself and be aware of new tools and skills I need for any task. Karl and I are trying to decide what role matches a propeller beanie?

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