Celebrating Experienced and Accidental Caregivers During Parkinson’s Awareness Month


Celebrating Experienced and Accidental Caregivers During Parkinson’s Awareness Month


As a caregiver for a person with Parkinson’s Disease (PD), in my opinion, you are an everyday superhero! Parkinson’s is a complex, progressive disease with no cure. Every person’s Parkinson’s journey is unique. It may begin with a tremor in a finger and progress to daily challenges: difficulty with walking, talking, swallowing. Even simple movements can become arduous.

April is Parkinson’s Awareness Month. This April in particular will be a month to remember due to the pandemic caused by COVID-19. If you are a primary caregiver for a loved one with Parkinson’s, it’s no doubt been a month filled with moments of fear and anxiety. Thankfully, seasoned caregivers have a toolbox filled with strategies to help them get through the day. They know who to call, where to seek help, etc. Primary caregivers are experienced, resourceful, and creative.  

But what about those of you who became accidental caregivers during this time? You were living your life with all the necessary systems in place when the pandemic struck and life changed. We are all sheltering in place, working from home, homeschooling children, and now you are also a caregiver--an accidental caregiver with a big heart, full of love and compassion but not a lot of experience!

Through this pandemic, many families have had to make new decisions about their loved one’s care: 

  • Your mother with PD lives with you but goes to an adult day center during the day so that you can work or take care of your family. The adult day center is now closed and you are working from home, caring for your family and your mother.

  • Your father with PD lives in assisted living where he is active and cared for yet there are cases of COVID-19 and some deaths have occurred. You decide it's best to bring him home where you will become his caregiver.

  • Your sister with PD lives independently and receives daily assistance through a home care agency. The agency has problems sending home health aides on a regular basis.  You live far away and now have to manage her care remotely.

These are challenging times to say the least. I can empathize as I was an accidental caregiver. I was going about my life until my mother fell ill with a gastrointestinal issue that required surgery and months of care. My father and I jumped into action with a lot of heart but not a lot of experience. It happens to someone every day when their loved one is diagnosed with PD or another illness.

That was the beginning of my mother’s health journey. She was diagnosed with PD a few years later and passed away in July 2018. I miss her every day, but I'm thankful for the many lessons she taught me as one of her caregivers. I would like to share a few of them with you today:

  • Be patient. With yourself, your family, and especially your loved one with PD. You are doing the best that you can. You are doing enough.

  • Reach out to local organizations. There are many community groups that are popping up to help during the COVID-19 crisis. Meal delivery, grocery shopping, prescription delivery. People want to help in times of crisis, let them.

  • Every worry needs a plan. Reach out to your medical team with your questions and get answers. Most medical practices are offering telemedicine, and physicians are available to respond to questions via email.

  • Find time for yourself. Reach out to family and friends to talk or schedule a video chat, virtual coffee, or happy hour. Spend a few minutes in meditation.

Hopefully, things will get back to a ’new normal’ soon. As a caregiver, experienced or accidental, remember you are a superhero to your family today and always.

Wishing you peace, love, and sparks of compassion.

Debbie Moulton

A version of this post also appears on Debbie's blog, Tuesdays With Mom. Debbie is a certified caregiving consultant. You can learn more about her consulting services at Real Life Spark.

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