Dennis was diagnosed with Parkinson’s 15 years ago and underwent Deep Brain Stimulation at OHSU in 2013. Last week, we heard his story, from the patient perspective. Here, his wife Mary Ellen provides a look into the caregiver’s frame of mind.

Originally published on Summit For Parkinson’s, a group of Montanans giving back to the Parkinson’s community.

The caregiver’s perspective

“How’s Dennis?” That is the typical question of friends and acquaintances wanting to show they care about the health of my husband. “Up and down,” I usually reply. But I am really thinking, “I wish I knew.”

It’s difficult to know how anyone is who has Parkinson’s. The days are not predictable. My husband and I  have lived with his Parkinson’s for ten years. He has what the experts term, “idiopathic Parkinson’s,” which, translated, appears to mean “Dennis appears to have Parkinson’s, but it’s just not typical.”

So given that Dennis has “idiopathic Parkinson’s,” I don’t know if what I am experiencing with his Parkinson’s is typical or not. That said, I do believe caregivers share a great deal in common no matter what the formal diagnosis of the partner may be.

Living with a Husband Who Has Parkinson’s

For the most part, living with Parkinson’s is like having a third person with you at all times. Imagine having someone with you who takes control randomly and changes his mind at will.  It’s stressful. The major issue I have found living with Parkinson’s is its unpredictability.

In terms of our lives, I am most challenged by my inability to plan.  I never know how Parkinson’s will impact my husband. Dennis can be doing something fairly normal, such as having dinner or watching television. Then, suddenly, he can’t walk. Sometimes his is even frozen in place. He can be ready to go to a football game one minute and unable to get out of the car the next. He can enter a party with enthusiasm looking energetic and lively and find that he has to leave the festivities a half hour later hardly able to navigate out the door. Our lives have become a “best guess” scenario in terms of how Dennis’ body will perform at any given time.

This unpredictability is often misunderstood by people who don’t know Parkinson’s symptoms or appreciate the complexity of the disease. I understand their confusion and sometimes disbelief. It is difficult to accept that a person with Parkinson’s who looks healthy enough one when he entered the room lacks the control to “buck-up,” “push through” or “hold on a minute.”

What Parkinson’s has Taught me

COMMUNICATION IS ESSENTIAL: In spite of the issues that often make living with Parkinson’s a nightmare for Dennis and for me, he and I daily talk about his feelings and mine. Because of this, we constantly make a point of communicating straight up. We don’t hide our feelings and opinions from each other. I don’t tell other people about what it’s like living with the disease that I don’t tell him directly. He doesn’t try to cover up his disappointment in what he can and can’t do. Because we communicate, we are able to laugh a lot about things such as breaking glasses or slopping food or typing on a computer. Laughter helps us both deal with frustration and anger and fear.

FLEXIBILITY IS A GIVEN: There is nothing that a person has planned that can’t be postponed or changed. Nothing.

PATIENCE IS MANDATORY: It’s a lot easier for a healthy person to do things for a person with physical challenges than to wait while they do it for themselves. I am healthy. I could play the role of superwoman. I don’t. I encourage Dennis do as much as he can for himself. If it takes him three hours to sweep the walk, so be it. If he needs salt, he gets up and gets it. Dennis has always taken pride in contributing to the well-being of our household. He deserves to participate. It is my belief that if I take over all the responsibilities for running our lives, I will eventually make him weaker and more dependent. This is not a good situation for either of us.

So, our “deal” is that when he is in dire need or is completely and totally frustrated and he needs my help, he tells me. I would call on him if I were experiencing the same thing. Otherwise, he takes care of things himself at his own pace which is on his Parkinson’s clock.

I find that when we are with friends or even just out in public, people are often so concerned that they jump up to help him. Some strangers have even grabbed his arm on occasion. When I see Dennis is in need, I just tell myself, “I must have patience.” Dennis deserves the right to be in control of his situation. I don’t intervene unless he requests it, or after I’ve consulted with him first. I notice I have begun treating all people with disabilities more patiently than I ever had before we began living with Parkinson’s. Now, when I see someone struggling to do something, I don’t just insist on helping. I ask. I wait. I am patient. It’s hard.