Wedding planning shed light on my mom’s caregiving responsibilities
It's difficult to leave my dad, who has Parkinson's, at home alone
My sister is getting married this year. We’re all in a tizzy about it, updating our passports and getting excited about traveling to a wedding we weren’t sure would ever come. Having more reasons to celebrate and come together is a light in the darkness and a refreshing way to experience the world.
An essential piece of the wedding process is finding the right dress. Although my sister lives in New York City and has been to a few shops already, she realized she wanted to book a trip home to Detroit so that she could include my mom in the shopping. So we made a girls’ weekend out of it, staying in Detroit, eating good food, and sipping on Champagne while my sister looked for a dress that will make her feel her best on her wedding day.
While planning for the trip, we asked my mom if she’d like to stay in the city with us. She lives an hour’s drive north of the city with my dad, who was diagnosed with Parkinson’s disease in 2013. She said no fairly quickly. At first, I wondered if it was because she is a homebody who simply likes her own bed. I know she finds comfort and safety in habits. Eventually, though, I got to the root of the matter: She didn’t want to leave my dad alone for two days.
Dad still manages to navigate life with Parkinson’s disease fairly well on his own, but his off times are increasingly less predictable. As his symptoms worsen, it’s harder for him to exercise his own independence. My mom isn’t comfortable with the idea of him being alone in case he falls late at night or struggles to get started in the morning.
This realization about my mom’s experience as a caregiver reminded me what life with Parkinson’s is like and about the empathy that is required for such a wild and unforgiving disease. I already knew it was invasive, inconsistent, and unbelievably hard to manage. Yet before this conversation with my mom, I hadn’t realized just how much Dad’s progression was affecting her. I wonder how many of my mom’s habits are a response to life with Parkinson’s disease.
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.
About the Author
Brenda
My husband has Parkinson's disease, diagnosed in 2016, though he had it much earlier than that, given he was stage 3 at diagnosis. When a husband has Parkinson's disease, the wife is greatly affected because she took looses her independence, especially in the early waking hours of the morning when she has to help him get him ready for the day and in the evening hours when she has to
prep her husband for bed. Going somewhere overnight with him requires me to take a long a rollator, a wheelchair, a handicap commode chair at the very least. Once he had a bad fall out of bed and was hospitalized, he now has to sleep in a hospital bed with rails. So, I can no longer travel overnight with him and I cannot leave him alone overnight because he can't raise and lower the manual hospital bed rails by himself. Plus, he has to have a trapeze bar and my hand to help him get out of bed each morning. Parkinson's disease is very confining for both spouses. Quite sad.
Denise
I am in the same boat, husband has PD and I’m caregiver. Yes this nasty disease is progressing.i find myself not wanting to leave my home, or even to go to the grocery store or for a walk, I feel rushed and anxious of something like a fall or choking may happen while I am out.
John Martin
I have Parkinson. Visiting Angeles is your solution.