When it comes to Parkinson's disease, the body is the main focus. It slows down, changes, becomes clumsy and deformed, sweats, tires out quickly, and it no longer obeys its owner when it comes to tremors or dyskinesia...The neurologist told us, "Continue to live like you did before..." Easier said than done!
The body mis en scène
The body and its miseries are central to my husband. He isn't always aware of it. Even if I understand that his expression reflects his daily discomfort, it is often tedious, even irritating for me. And, by choice, I listen, I express my weariness or I sing to him "J'ai la rate qui se dilate..." Finally the disease always brings back our good memories and, contrary to what my husband may think, he is not the one irritating me, but it's his sickness.
I wonder about my husband's lack of decency. The nurse in me often noticed this lack of decency with the elderly and institutionalized and thought that it was the consequence of the way in which their bodies are approached by nurses, or even a frontal lobe syndrome. My husband told me that actually it's a simplification: Once the body is hard to move, it's -- among other things -- easier to sleep naked because the friction between the body, pajamas, and sheets hinder his movement. And he pays careful attention not to roam naked in front of our daughters-in-law.
The disease forces a new intimacy. The first time that I had to give my husband a shower, I had the feeling of no longer knowing what I had already practiced with numerous patients, as if the emotional dimension disrupted my know-how. He sensed my discomfort, which he interpreted as agitation because he thought it was a "normal" reaction.
Gestures become difficult so they are cut down, and personal hygiene, for example, is no longer a daily routine. There again, what the nurse in me accepted without problem for a patient, the spouse in me supports with more difficulty and, without pestering, I express my wish to have in front of me a clean-shaven husband, at least one day out of two. My husband holds up pretty well and says that "it rolls off" a bit like water on a bird's feathers...and I respond that he isn't attractive as long as he looks like a convict.
We don't sleep together anymore because of his restlessness at night, and that certainly brings about the loss of physical contact. We "miss" each other and make up for that by a few brief awkward cuddle sessions. The lack of comfort and the frustration come quickly. We don't do what we want with a hand that trembles, a body that stiffens. The spouse that I am "protects" by putting distance between us to minimize frustration.
So here are some aspects of our family life with Parkinson's disease. Please look at our experience as a generality!
This blog post originally appeared on The Huffington Post France and was translated from French.