I Will Always Love and Care for My Sister — Even When It’s Inconvenient

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by Jo Gambosi |

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Have you ever decided to work on a personal project or settled down just to relax, ready to welcome the time alone? If you’re a list-maker like me, you’ve carefully gone over your to-do list and checked every item off. Then, suddenly, it happens — the interruption. Aargh!

Someone texts you (or even worse, sends a group text), calls, or asks if they could stop in for “just a few minutes.” But dang, it was time to relax and take care of what I needed to do!

In caring for and about someone with Parkinson’s disease (PD), interruptions have become my norm. While inconvenient, I view them as a test of my patience and unconditional love.

I would never want my sister Bev, who has stage 3 PD, to think that I am tired of caring for her. I love and treasure her. But caregiver fatigue is real, and the duties can often be bothersome and ill-timed.

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Since I live in Arizona, and Bev lives in Ohio, I care for her through frequent conversations, virtual meetings, managing her finances and online bills, and providing tech support. Bev’s daughter (who lives with her), son, and friends provide assistance with physical challenges such as balance and gait issues.

I’ve definitely had to practice “inconvenient love” with Bev — more so as time passes. By that, I mean I have to put her priorities first and lay aside my own. Bev has increasing cognitive difficulty because of her PD, so she’ll repeatedly call me to ask about the balance of her bank account or how to manage something on her cellphone or computer.

Moments writer Joe Duncan explains why love must be inconvenient:

“The guiding principles of our lives only become meaningful when we adhere to them in times of inconvenience or problems. Our moral character is truly tested upon the backdrop of pressure when the fibers of what we’re made of are put to the ultimate test — in no place is this more relevant than in our personal relationships with others who are significant to us.”

As one of Bev’s caregivers, there’s no escaping the inconvenient love required and the interruptions to my life. But for Bev and anyone else living with PD, the interruptions caused by the physical and emotional challenges of the disease have a far greater impact on their lives.

Fellow Parkinson’s News Today columnist Mary Beth Skylis recently shared the following about her father, who has PD: “One thing about Parkinson’s is that it’s a daily reality — those who have it wake up in the morning, only to realize that Parkinson’s is still there. Every day is a reminder that there’s no escaping it.”

Through my faith, I have learned that loving people means always loving them — even when it’s inconvenient. Caring for someone with PD guarantees interruptions, especially as the disease progresses. It requires an “I am second” attitude. I pray that I can act with patience, compassion, and understanding when these interruptions occur.

Caring for someone and loving them was never meant to be easy.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Joanne Eckert avatar

Joanne Eckert

The real-life stories here are wonderful. In the past I was a caregiver to my Dad, my Mom, my neighbor and my sister. It’s true that an “I am second’ attitude” is necessary, but if you truly love someone, it’s quick to adapt to. Sadly my son, at the age of 42, was diagnosed with Parkinson’s. He has a wife and 5 children (twins & triplets). He is now 48. Just 8 months ago we were told his wife wants a divorce. She has no shame in admitting that she doesn’t want to deal with a sick husband. As she says, “I want to be happy.” So here I sit, 3 hours away from them, trying to figure out how is this even possible after 19 years of marriage. At the onset, they both went and had tattoos put on their arms saying “We’ve Got This”. I spoke with her. She made it very plain that she doesn’t want to be a caregiver. Our hearts are crushed. Having strong faith and family values, my son doesn’t want his children to have to leave their home so he has agreed to find another house for himself nearby so he can spend lots of time with the children. He will be living alone and that concerns us deeply. However, we truly believe a cure is coming very soon. If not that, we’re believing for a miracle for our son. To those taking care of loved ones, I say “Thank you for doing what is right.” God will bless you. Remember to have time-outs to care for yourself and when you’re with your loved ones, let them feel your love. They’re scared. They need you.” Thank you again for the beautiful article.

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JIM STARRETT avatar

JIM STARRETT

Patience is more than important.... in my case it has taken a lot of practice since the past ten years i have been the number one caregiver for my wife. back in 2012 she was diagnosed with 4th stage cancer, and Parkinson's disease.
At that moment in time her doctors discovered a severe compressed fracture of a vertebra in her lower spinal column.
She survived the cancer, it's gone. a victory for both of us. as her struggle with Parkinson's continues i keep abrest of the changes caused by this horrible disease, but patience, love, and taking care of oneself can make a difference.

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