Just because someone carries it well doesn’t mean their load isn’t heavy

A little support can go a long way in easing caregiver burden

Jamie Askari avatar

by Jamie Askari |

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I’m not typically a private person by nature. But for nearly 15 years, I’ve worked hard to hide my heavy load, to keep it tucked away from the world. Some days, this load weighs on me so much that, figuratively, I can hardly stand up. I usually struggle in silence as I bear the weight of the Parkinson’s caregiver load.

When my husband, Arman, was diagnosed in 2009 with early-onset Parkinson’s disease at age 38, I vowed to stay positive and not let the condition ruin my family’s solid foundation and happiness. I just couldn’t allow Parkinson’s disease to have that much power.

So I put a smile on my face every single day and resist the pull toward self-pity, anger, and sadness. Ironically, my daughter is always saying that in pictures, my smile looks fake, forced, or unnatural. Maybe she’s right.

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Working as a team

I’m aware that when it comes to Parkinson’s and caregiving, I have it fairly easy at this point. However, things are slowly getting harder, so I try to stay present and enjoy where we’re at currently. My husband values his independence and does his best to keep my load light, as he can see when I struggle to carry it all.

Despite his balance issues, slowness, and stiffness, he tries to do what he can to help me. On the flip side, I try to allow him to do as much as possible. While it’s very tempting to hover over his every move to ensure his safety, I’m doing my best to allow him the space and freedom to manage his tasks independently.

Don’t get me wrong, I hover quite often, especially in public places that may not be as safe as home. But I’m trying to allow him to take some of the load off my back. We have always functioned as a team in our marriage, and I want to keep it that way.

We all encounter stressful situations daily, such as traffic, rude people, and the ordinary annoyances that rule our everyday lives. I have no idea what anyone is going through, and their load may be much heavier than mine. So I do my best to stay kind and respectful of others in every situation, even stressful ones.

This can be challenging, but I always try to treat others how I expect to be treated. As the popular saying goes, just because someone carries it well doesn’t mean their load isn’t heavy.


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

rgmichel avatar

rgmichel

My wife is in her 17th year of PD, so I know exactly where you are. "Hovering" is a good way to put it. Its sounds like my wife is further advanced, as I have to "hover" 24/7. I often think its more difficult for a woman to look after a man with PD, then the other way around. My wife is in such condition that my strength is often needed to catch a fall, or lift her into the bed or help her in the bathroom. My understanding is that it becomes worse, but I don't think about that too much. The correspondent here is working, which is good for sanity. I have kept up my work, albeit from home and only part time, but I could not be a carer full time and work full time. The early years of PD were relatively easy, with the only blessing being that PD progresses very slowly.

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Jamie Askari avatar

Jamie Askari

Thanks for understanding about the "hovering", I am beginning to do it more often everyday. I am working hard to keep my body strong for the future of PD!!

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Mike avatar

Mike

Jamie,
Parkinson’s is tough for all impacted by it. But you know at church this morning there we’re lots of folks wIth health issues lots more challenging than mine. I just have to remember my blessings and avoid the self pity that can creep in . It helps me so much to hear of other challenges. Thanks Jamie, Blessings, Mikei

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Jamie Askari avatar

Jamie Askari

Thanks Mike, I always appreciate your kind words! I agree that is so important to continue to count our blessings, even on the hard days.

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Lori DePorter avatar

Lori DePorter

Well said Jamie. My husband found it difficult to watch me struggle to find my way. More research is being done on the needs of caregivers. https://parkinsonsnewstoday.com/columns/research-confirms-need-parkinsons-caregiver-support

Lori

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Jamie Askari avatar

Jamie Askari

Thanks for reading Lori! It is great to hear about the research being done, so very important!

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