For Caregivers: Wearing Many Hats
As a Parkinson’s disease care partner, I feel that I’m the “Wearer of Many Hats”. I find this metaphor explains the caregiver/care partner’s situation - the unpredictability of Parkinson’s requires us to be ready to make a change to 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.
Multitasking to see the neurologist
Here’s an example - A visit to the neurologist/movement disorder specialist for a follow-up/check-up appointment:
- To make the appointment - I’m the scheduler, with calendar in hand, that schedules the appointment. Not to mention being a voicemail ninja navigating those prompts in 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 medication(s) 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.
- 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 eighteen 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.
- 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.
- When the neurologist/movement disorder specialist 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, etc. 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, etc. – it’s too much for anyone person to remember!
Caregivers have to juggle so many roles & responsbilities
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?
Do you think there is enough awareness of Parkinson's disease?