“Notes from Movers & Shakers with Parkinson”: How You See Your Changing Roles

Does your spouse ever get on your nerves? Can you tell when you get on theirs? Is it possible to preserve a loving and open relationship between caregivers and their charges with Parkinson Disease, considering the difficulties involved in dealing day-to-day with a slowly-progressive disease? In doing research for the book “Notes from Movers & Shakers With Parkinson”, we observed that while there was helpful information available focused on physical and logistical problems, there was little discussion in Parkinson Disease (PD) forums about the effect that changing roles has on the relationship between spouse and patient, from their own perspectives.

Those caregivers (who represent a clear majority) who are partners with the PDers in their care will see their relationships change. This should be no surprise, since the change in roles is often dramatic. The result is often very difficult to cope with. How can we keep communications open and stress levels manageable?

I was diagnosed with PD more than 10 years ago. My first reaction was to get home to my husband, Dale. We began dating in college and our relationship had endured over the years, and it was natural to turn to him first with this life-changing news. Although we were frightened by the prospect of what a future with Parkinson would mean, we tried to be optimistic. And, after some trial and error, medication seemed to control most of the symptoms. We talked about our fears, our priorities, and made some plans, including a short “bucket list”. Since I was not able to function at the high levels of stress that were part and parcel of my job in a major financial institution, I left the corporate world and worked on special projects, mostly editing, including my husband’s books – he’s an author.

Physical changes occurred slowly; I fell a couple of times while jogging, slipped on the ice and broke my nose; I realized that I had lost depth perception. This made navigating stairs, curbs, etc., very tricky. My husband became a human GPS, as we walked along –“Watch the curb on the right”, “There’s a step-down right here”, “Hold on to the railing”. He continued to be helpful around the house.

Two other pertinent factors to consider: I participate in a rigorous exercise program, which I believe has been instrumental in slowing the progress of the disease. And, I am taking medication that can influence behavior. It’s important to remember that Parkinson’s is described in some places, as a movement and behavior disorder.  Although I do not exhibit blatantly compulsive behavior, I notice that there are some activities that I cannot leave until completed. I joke about having “OCD” (Obsessive Compulsive Disorder). And I am much more easily distracted; periodically I seem to have lost the single-mindedness of purpose that I used to have.

All of this brings us to the effect PD is having on my relationship with my spouse/caregiver. As Dale began to understand where the shortcomings were in my daily routine, i.e., difficulty getting most things done on time, moving from one project to another without completing either… he developed ways to keep me on time. (Reminders an hour and half-hour before we’re to depart, staying “on my case” when he sees me leave the laundry without filling the washing machine to do something else). At first I took umbrage at his “telling me what to do” and acting like a parent. And he took umbrage at my “not taking his help and continuing to be disorganized, late, etc.”  We were both angry at each other’s stubborn stance. Each of us saw the other as insensitive and unappreciative. Once anger set in, there was a real potential for a downward spiral.

That famous line from the movie “Hud”, “What we got here is a failure to communicate”, is at the base of this problem. We needed to sit and talk and realize that each of us needed to know that the other was in fact doing his or her best to resolve issues, and that they were not trying to exert control over the other. And, it may be difficult to understand that what seems like an easy thing to do, like “pay attention”, takes much more effort and concentration than it used to.  And, that we might have to adjust our behavior, and to give up some of that “control” in order to enhance the day-to-day functionality of our lives.

As Dale pointed out, there is also a real need for both of us to “let go” of some things. It may not be appropriate for us to try to be in charge of all that was in our span of control. It may be time to reprioritize, or to stop doing certain things! And closely related to “letting go”, is accepting what is the new reality. The only way that we can move forward with a fresh outlook, is to assess these issues and determine what we can let go of, and what our new reality is.

We are determined to continue to communicate with each other about these sensitivities. I am convinced that if we can stay in touch with each other’s feelings and needs, not only will it help our daily lives, it will enable us to stay as healthy and as happy as we possibly can. We’ll be able to get past coping, and move forward to enjoy life.

Chris Ludwig, worked in a variety of capacities, before writing “Notes from Movers & Shakers with Parkinson”; she was a tax-preparer, a TV “Weather Girl”, and before retirement, a Vice President of technology for a major financial institution. She was diagnosed with PD more than 10 years ago. She’s an avid exercise practitioner, a novice tap-dancer, and believes strongly that “Exercise is medicine!” Chris now lives and shakes in Florida and Cape Cod with her husband Dale, where she continues to appreciate every day with joy and enthusiasm.

For more information or to order “Notes from Movers and Shakers with Parkinson,” please visit www.createspace.com/3747802.

Posted: 3/6/2012 7:54:44 AM by Cathy Whitlock

Browse current and archived blog articles written by caregivers, for caregivers.

May 2015
Part 2: Tips for Parkinson's Caregivers to help improve quality of life

April 2015
Tips for Parkinson's Caregivers to help improve quality of life.

December 2014
Keeping Watch

November 2014
Resources for People Who Care for Someone with Parkinson’s

September 2014
I Don't Like Parkinson's, but I Love the People in My Life

August 2014
Baby, oh Baby?

July 2014
When the Caregiver Takes a Break

May 2014
Arriving at Thriving

March 2014
Adult Swim

February 2014
5 Disability Insurance Issues Worth Talking About

December 2013
DBS: How it changed darkness into light

November 2013
Family Caregivers Deserve Special Recognition

September 2013
Saving $49,500 for a Good Night’s Sleep

August 2013
Growing Up with Parkinson’s

July 2013

June 2013
I Wish I May, I Wish I Might

April 2013
5 Grab-and-Go Healthy Snacks for Parkinson's Caregivers

March 2013
5 Caregiving Tips for Lewy Body Dementia

January 2013
Lewy What?

November 2012
How to Support a Caregiving Spouse: Three Tips from My Other Caregiving Half

October 2012
Bobcats and Turtles

August 2012
Build a Ramp

July 2012
A Bathroom That Works

June 2012
Lessons in Care, Lessons in Time

May 2012
Welcome to CareZone

April 2012
Dignity and Empathy in Caregiving

March 2012
Notes from "Movers & Shakers with Parkinson": How You See Your Changing Roles

February 2012
PD Inpatient "Care": Inept, Indifferent, Incompetent, Insufficient, Injurious

January 2012
Caregiver Isolation as Cultural Disease

November 2011
How to Take Care of the Caregiver

September 2011
The Disregarded Costs of Agency Care

August 2011
7 Tips for Hiring Good Caregivers

July 2011
Parkinson's and Your Voice: The Essence of You

June 2011
7 Ways a Care Recipient Can Help Alleviate Caregiver Burnout

May 2011
Lessons Learned About Caregiving for a Person with Parkinson's and Alzheimer's Disease

April 2011
Communicating With Your Partner When Speech and Voice Are Declining

March 2011
Long Distance Caregiving

February 2011
Financial Planning Webinar for Caregivers

January 2011
Caregiving Tool: A Home Healthcare Management System

December 2010
Caregiver Sanity: Three Things I Try to Remember

November 2010
Appreciating Family Caregivers

May 2010
Good Body Mechanics for Caregivers by Kevin Lockette, PT

March 2010
Taking the First Step in Your Own Care by Carol Levine

Currently: 0 (0 ratings)


Each month, we will feature a new column by caregivers on topic important for caregivers of people with Parkinson's disease. Read the latest column now.

Subscribe to this blog