I finally try a caregiver support group, and — surprise! — it helps

I never thought I’d be interested in a support group for Parkinson’s caregivers. When my husband, Arman, was diagnosed, we were both in our late 30s, and I certainly didn’t think I could relate to anyone caring for someone in my parent’s generation. I was also so busy with young children that I didn’t have time to look for anyone in a situation similar to mine.

One reason I felt I’d have trouble connecting with a support group is because Arman’s early-onset diagnosis came with specific concerns, and I thought many of them wouldn’t apply to those diagnosed in later years. For example, our top priority after his diagnosis was our young kids. We wanted to ensure that they grew up in a happy home despite the challenges we faced. Most families’ typical parenting issues appeared very different from our focus of navigating life and parenting with young children and chronic illness.

Another big issue we dealt with early on was the loss of Arman’s career. My husband had been practicing cardiology for only a handful of years before that work was cut short by his Parkinson’s. I thought it’d be tough for anyone to understand the pain of losing not only a career, but also an identity.

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Things have changed

Now that I’m an empty nester in my 50s, I felt it was finally time to join a support group for caregivers of spouses with Parkinson’s disease. I don’t regret my choice to wait almost 15 years until I was ready for this step; in general, I feel it’s important to support myself and my decisions, and thus minimize regret when possible.

It’s been wonderful to get to know some amazing people dealing with many of the same concerns and struggles I do. I’m comforted to know that I’m no longer alone in my journey as a Parkinson’s caregiver.

Beyond the beautiful support I’ve gained from this group, I’ve also learned so many valuable tips and tricks. My group has let me know more about Parkinson’s B1 therapy, and my husband has been trying it out. Our topics of discussion have included acupuncture and vegetarian diets, which have opened my eyes to options we might try.

While the manifestation of Parkinson’s disease is unique to each patient, learning about what others are experiencing is helpful. We’ve all become experts in caring for our spouses and their specific challenges, and we each have much knowledge to share about what we’ve learned.

Whether you’re a seasoned caregiver, a newbie, or somewhere in between, a support group might be a useful addition to your caregiver toolbox. It takes a village to navigate life on the caregiver journey, and welcoming a support group to my path has made the route feel a bit less bumpy.

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.