How I fully commit to my role as a Parkinson’s family caregiver
My approach to providing care for a husband with early-onset Parkinson’s
About a year or so after my husband, Arman, was diagnosed with early-onset Parkinson’s disease, we were attending a party. I remember an acquaintance asking me that night, “Why don’t you ever let loose and have some fun?”
At that point, Arman was early in the progression of the disease and didn’t require much help from me yet. But he was starting to need me to step in to assist him with the tasks of daily living. Even at that early stage of progression, I saw the need to be his protector.
From the first day of his diagnosis in 2009, I was always on my game in case I needed to step up and help Arman with anything, day or night. I could no longer put anyone or anything before him, as my world became about caring for him. It was quite the juggling act, as our three children were very young at the time.
The caregiver commitment
It may be difficult to fully understand what I call the caregiver commitment. This means that every waking moment of your life as a caregiver is committed to your loved one with chronic illness, with no exceptions.
Not long after Arman was diagnosed at age 38, I came to an interesting revelation. I realized that as my husband’s caregiver, no matter what stage he was in, I always had to be prepared for any situation that might arise. It reminded me of when Arman was a medical resident and was on call. His pager was always turned on, just in case.
Over the years, this caregiver commitment has gradually fallen on our children’s shoulders in addition to mine. Growing up with a parent who has a chronic illness is on-the-job training for this. When they visit us at home, or we are all together on vacation, they take this commitment very seriously. It makes me proud to see how my children are so eager to step up and help their dad and me at any moment. All we have to do is look at each other, and they know what needs to be done. It is like our family has an unspoken language in this regard.
I know how important my role is as Arman’s caregiver, and I realize that it can be complicated to be both his spouse and caregiver. It can be easier to step in and help when I see him struggling, but I try to wait until he has a chance to try on his own. I do my best to allow him independence, even when it makes me uncomfortable. Maintaining his sense of autonomy is essential to his well-being and sense of self-worth.
Adding caregiving to any relationship can be a complicated journey without maps or directions. Finding the perfect balance to avoid helping too much or too little is difficult. I continue to seek the strength it requires to be the best caregiver I can be while looking on the bright side of every situation.
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