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We Make Them Together: Major Decisions in Caregiving

Monday May 09, 2016

7 years ago my husband of 53 years was diagnosed with Parkinson’s. We made some major decisions along this path that have assisted us in coping with this progressive disease. I was asked to share them.

Decision 1

We will continue to learn and be physically active. As time and energy permit we make use of all the available classes, books, seminars and activities. We observe, listen and learn from others with Parkinson’s. I walk early every morning with neighbors for an hour, take classes and maintain hobbies that are in my area of interests. My husband is involved in social activities for men with Parkinson’s and multiple exercise classes. He participates (with reminders since his executive function has diminished) in the household chores he is able to do.

Decision 2

As his wife I do not assume any task that he can still do unless we talk about it. If he wants to do something I feel he shouldn’t or couldn’t do we talk about it. When preparing for appointments with the Doctors I express my differences with his view of symptoms as “I see it differently”. It feels good to know that we can disagree and be honest with one another.

Decision 3

We built an intergenerational group to assist us in this journey. Our team includes our local daughter and husband (ages 40s), a couple in their 50s, another in their 70’s. We interact with them socially almost weekly. We meet formally as a team about every three months for dinner. We review a list of all areas of our life. We ask for their input. Examples of the ways they helped us are

• My husband was experiencing dramatic nighttime dreaming. I became sleep deprived and experienced anxiety. With their encouragement I sought help from my Dr. and spent a week with friends at the beach. His meds were changed and the problem is resolved for now.
• Accessing financial resources with his name only on them was a major issue. The team identified steps to take and held us accountable for completing the forms with our attorney.
• When transportation & driving issues came up, the bus (which we both now use) and Uber were suggested. With my daughter I tried out Uber and now know how to use it.
• He was resistant to changing medical providers for vision issues. The team was able to persuade him to do so.
• A Team member is helping develop a plan on the computer to renew prescriptions relieving the anxiety of one of the multiple medications running out.
As his wife these decisions have helped me know I do not need to assume all the responsibility. I can count others to provide perspective, wisdom, support and guidance along the way. This helps us be partners instead of patient and caregiver.

Sharon WebbAbout Sharon

Sharon resides in Washington state and had a long, rewarding career in Education and Human Services. She still occasionally substitute teaches. She raised 3 daughters and has 10 grandchildren. Family and friends are at the top of her list for life’s enjoyment.

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