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A father closes his eyes as he begins to dissipate. Abstract brain patterns scatter behind him.

Depression & Parkinson’s: Losing the Ability to be Happy

Parkinson’s disease does this incredible thing where it not only takes away one’s ability to control their body but also takes away one’s ability to be happy. It’s not enough to literally lose your body but also your mind.

Supporting my loved one while living my own life

For my father, his depression is brought on even more so because of his loss of routine and ability to work. As his family, the hard part is we aren’t sure how to support him through this time but also keep going with our lives. How does one support and love a sick parent but also remain working towards your own goals? I know there isn’t a version of my life where I disappear and just don’t check in at all. That’s an extreme that isn’t even conceivable.

The other extreme, though, is very much conceivable and quite frankly, terrifying. The idea that I solely dedicate all my hours to caring for this man and do nothing to further myself. These thoughts come off quite selfish and dark, but for immigrant kids like me and my siblings, supporting our parents didn’t just start because he got sick. We have been active in our family’s success since we were kids. We supported and worked with our parents to become educated and successful.

We’ve been supporting our parents since we knew how to navigate Microsoft Excel (3rd grade, thank you very much). To drop all the work that we had all been putting into our careers and future and become dedicated to our father is a difficult concept to swallow. And because my father’s brain chemistry is all over the place, it is hard for us to understand how he could ask us to drop our careers and be with him. He worked so hard to make sure we could have an education and be successful that to see him want to get in the way of that means he really isn’t himself anymore.

Feeling guilty not being there 24/7

Most recently, with us being home for the holidays, this time of year is nice for him but also difficult because it showed him what life would be like if his kids were with him all the time – a situation that is ideal for him, not so much for us. It does make me feel guilty to see him so sad, knowing that if I dedicated all of my hours to him, he wouldn’t feel this way.

I did live at home for two years after college, which was not easy. Not because I lost control of my routine or because I couldn’t be out late as I wanted but more because I immersed myself into his care. I lost who I was. It felt like for two years, I did nothing but support him and my mother. I think I cried all night before my 24th birthday – feeling the loss of purpose and direction at 24, but also the guilt for wanting to have a sense of direction even if it means not being there for my father. Quitting my job and moving out to New York came with a lot of guilt and still does.

What’s best for my own life?

What really stops me though is, because of his illness, it is difficult for him to see beyond himself. He would love for us to always be around him and be ready to comfort him when he needs it the most.

The night before I caught my flight back to New York, he cried to me that I wasn’t home anymore. I think his words were “What did I do that my kids aren’t with me as I am dying?” The thing with Parkinson’s is it wreaks havoc because it does kill someone but not right away. So yes, he is dying but less so in the immediate sense as other chronic illnesses.

The idea of being near him in his final years would mean we as his family could love him and support him as he needs for as long as possible. But for how long? And where does that leave me? And my career? And the future of my non-existent love life? I know it all sounds so selfish, but finding the balance between caring for your sick parent and your future is well, hard. It’s all really hard.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • TerryB
    2 months ago

    I have been living with this disease for several years now and I have come to the realization that I will always have to take an additional medication to deal with the, what I call, “ups & downs” or crying one minute and wanting to whip someone’s ass the next. I take “paxil” every day and I am able to manage those ups & downs. I strongly suggest you check with the Neurologist handling your father’s disease.

  • Juwairiya Syed author
    2 weeks ago

    Thank you Terry! I have actually taken your advice and decided to switch my father’s neurologist to someone else. It seemed we just weren’t getting the proactive support we needed for him. Let’s see how this new one works out.

  • Emma Lawton moderator
    2 months ago

    A beautifully frank article on a really tricky subject. Thank you for being brave enough to share your story as for those of us with Parkinson’s it’s really valuable to see a different perspective.
    Emma [moderator]

  • Juwairiya Syed author
    2 weeks ago

    Thank you Emma for saying that. I don’t feel brave but still, thank you.

  • Dan Glass moderator
    2 months ago

    A very powerful statement about a very difficult and painful situation. Thanks for sharing. Welcome to our team!!

  • Juwairiya Syed author
    2 weeks ago

    Dan,

    Thank you. And I am very happy to be here on the team.

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