As caregivers, we must remember the importance of independence

How I assist my husband while ensuring he maintains his sense of autonomy

Jamie Askari avatar

by Jamie Askari |

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One of my most vivid parenting memories involves my oldest daughter, Alexa, who’s now 27. We lived in Boston then, and I had enrolled her in a preschool program for 3-year-olds. She would be at school twice weekly from 10 a.m. until noon, which worked perfectly with her strict napping schedule. We discussed how much fun school would be all summer, and she seemed excited about it.

On the first day, I packed her backpack and strapped it onto her tiny back. I filled it with the comforts of home (her extra blankie, stuffed animals, and pictures of her dad and me), just in case she felt sad or lonely. She looked like she was carrying a large suitcase, but she loved it.

As soon as we walked into school, her enthusiasm did a quick 180. Her big brown eyes welled up with enormous tears, and she simply stated, “No school, Mama.”

As much as I hated to say it, I said, “Yes, school, Lex.”

For the next nine months of the school year, the teachers had to pry my screaming child out of my arms. Each time, they reassured me by reminding me that as soon as I was out of sight, my daughter ruled the classroom like a small dictator. Clearly, the only real issue was the moment she separated from me. As her parent, my job was to allow her to gain independence so she could blossom into the person she was destined to become. I am proud to say that she’s a very independent adult, despite the 3-year-old traumas of her past.

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How I fully commit to my role as a Parkinson’s family caregiver

Ironically, the end goal of parenting is to raise our children to leave us. To instill a sense of independence so strong that they can thrive on their own. My oldest sister told me that the best thing we can do for our children is give them wings to fly, and I lived by that mantra while raising my kids.

But what happens when independence is taken away unexpectedly by a chronic illness? Specifically in adulthood? The loss of so many things, in addition to independence, is overwhelming.

As caregivers, how can we continue to foster independence while gently assisting our loved one? Is there a way of helping without making our person feel helpless?

Finding a balance

I am a caregiver to my husband, Arman, who has early-onset Parkinson’s disease, and I feel that it is crucial for him to maintain his sense of self and autonomy. He needs to continue doing as much as possible without me stepping in to assist. He needs to know that he is still himself, an independent human.

There are a lot of helpful tools and suggestions for helping a person with Parkinson’s maintain their independence. For example, a clutter-free environment is an easy way to make any area safe and limit the opportunity for falls. Chairs with arms and no casters are the best choices so that the person can get in and out of their chair easily, safely, and independently. Loose-fitting, stretchy clothing is easier to maneuver and can be less frustrating to take on and off.

Occupational and physical therapy also are great tools that can prolong independence and safety. In addition, speech therapy can help maintain a strong, clear voice and decrease the chances of speech difficulties and the need for assistance as the disease progresses.

Parkinson’s disease can ultimately diminish all aspects of independence, leaving the person to depend on others. But until that happens, I will continue to fight against it. I will provide my husband with unconditional support but allow him the space to continue to be his own person. Parkinson’s takes away so much; we can’t let it take away independence, too.

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.


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