Providing Spousal Support When Your Loved One Has Parkinson's
I have this idea - a conspiracy theory really - that in the 60s and the 70s, infomercials were put out telling people, nay, warning people about the terrible effects of therapy. That therapy is somehow evil or completely useless. This theory is the only way I can figure out why people of my mother’s generation are so allergic to the idea of going to therapy. Every one of my friends I talk to say the same thing - my mother refuses to even entertain the idea of going to therapy. But for my mother, as the spouse of a man with Parkinson’s disease, therapy does not seem like an option but a necessity. Yet, she refuses.
The relationship between my parents
The dynamic of my parents is not unlike many immigrant-arranged-marriage-let’s-move-to-a-whole-new-country-on-our-own marriages. From the beginning, they depended on each other. My mother was 19 years old when she got married to my father. She left behind the only life she had ever known and married a man she had never met.
Five years and two kids later, my father decided moving to America was the next thing to do. Everyone was doing it. Like wearing light-washed mom jeans, moving to America was the trend for Indians in the late 80s and early 90s. So she followed her husband’s lead and packed up the saris she would never really wear again. They got here and needed to figure out how to make money. My father said let’s open a stall in the San Jose Flea Market. So they did.
My mother had great customer service skills and a keen ear for languages. My father bought and tracked the merchandise. They were doing it, figuring it out, together. Then they saved up enough to own a store. My father said let’s open a Dollar Store. So they did. She learned Spanish fluently, and he paid attention to what was selling and what was not. She learned how to make balloon decorations and bouquets, decorating majority of the local quinceaneras and baptism parties. 25 years went by like that.
With him seeing a vision for their future, and her working alongside him to make that vision come true. He led and she followed. You have to understand, she never stopped working by her husband’s side. Just as much as he needed someone to work out his vision, she needed someone to have the vision. But then, my father got Parkinson’s.
Caring for someone with Parkinson's
His visions no longer became realistic, and she started to see the holes in his ideas. He was too sick to work and she needed to make money. Gone was the dynamic she had grown accustomed to. Now she has to deal with the fact that her partner in life, her leader, was no longer the same person. She has to understand how to lead them together through his illness. She has to figure out how to be the sole income provider, the caregiver, and the visionary for her family. What was before is no longer and to make peace with that must be very difficult.
Which is why I push her to seek help, seek therapy, group counseling but she refuses. I can only imagine what she is going through, but for me, I have no clue as to why she would refuse to see a therapist anymore than if she were to refuse to take medicine for a common cold. I cannot begin to understand what she is losing, what she is dealing with and I cannot push her beyond her limits. But I hope she sees and understands I want what is best for her and she cannot do this alone.
Do you participate in a support group for PD?