Voices from Parkinson's community
Mrs. Shaky Paws Top 10 Recommendations for Care Partners
Live in the moment
- Learn from the past, plan for tomorrow, but live for today.
- Don’t put off those activities that you have talked about doing “some day”.
- Make time for fun.
- It is crucial to keep the lines of communication open. Tell each other what you are thinking and feeling.
- Share the things you are worried about and problem solve together. Express your love for each other frequently.
- Catch each other doing little things that provide an opportunity to express appreciation.
- Learn as much as you can about PD and related issues.
- Stay engaged by participating in support groups and seminars.
- Participate in clinical research trials with your partner in order to help yourselves as well as others.
- Understand and accept that PD is a moving target and that your partner’s evolving condition/needs as well as your own will require flexibility and adaptation.
Advocate for your partner and yourself
- Accompany your partner to all medical appointments in order to provide first-hand information about what your partner is experiencing as well a “second set of ears”.
- Since it is typical for your partner to have executive function problems, take notes regarding important details
- Ask questions, voice thoughts/ideas and ask for clarification of anything that is unclear.
Take care of yourself
- Ask for help. Solicit assistance as needed from family members and/or friends.
- Make time for yourself. Stay engaged with your passions.
- Attend to your personal wellness.
- Our belief that we will be equipped to deal with whatever happens is extremely comforting to us. Staying committed to that idea over time requires faith.
- Faith provides an opportunity to “let go” of fear about the future over which we have no control, and focus on the things we can control.
- Read the same article listed under #1 if you haven’t already.
- PD mood swings and/or cognitive problems can be very hard on relationships. No matter how good your communication, it is likely that your partner will sometimes act or react in ways that are “not tactful”. Try very hard not to take these things personally.
- At a later time, communicate about what happened.
- Don’t let an individual episode create a rift between you.
- Talk with your Movement Disorder Specialist (MDS) about any ongoing concerns.
- Your “PD life” takes place in the context of your “overall” life. It will be beneficial to both of you to keep the two integrated and balanced as much as possible.
- As the disease evolves, your partner’s physical and mental abilities will change and may be influenced by depression, anxiety or apathy.
- Based on your knowledge of your partner, you can experiment with different strategies to encourage exercise, keep them engaged mentally and socially, discourage driving and more. Keep your MDS in the loop and ask for suggestions.
- Care partner/PWP breakout sessions in support group meetings are a good opportunity to share concerns and get suggestions.
Be prepared to make tough choices
- Despite your best efforts, there may be a time when you are no longer able to cope with your partner at home by yourself.
- Explore options (preferably with your partner) such as assisted living, residential facilities, or in-home care/services so that you can make an informed decision if and when the time comes.
- Do not “suffer in silence” or feel compelled to “go down with the ship”. Talk to your MDS, support group friends, and family members as necessary.
- Continue to find the joy in your lives and the love in your relationship.
- Celebrate the small victories.
- Be happy whenever possible.
- Do NOT let PD own you!
“Mrs. Shaky Paws” is Linda Hall, retired social worker and wife/care partner of Kirk Hall (they will celebrate their 43rd wedding anniversary this year), author of Carson And His Shaky Paws Grampa and patient perspective Parkinson’s advocate/speaker. Initially reluctant to accept her husband’s diagnosis, Linda has become very knowledgeable regarding PD and is a very effective advocate for him. She is an active participant with Kirk in Denver area support groups and the Parkinson Association of the Rockies. Linda is engaged in an ongoing “balancing act” involving six grandchildren, her love of exercise and competitive tennis, involvement in the local PD community, and Kirk’s evolving needs and activities. Articles related to the book, Kirk & Linda’s journey, and the challenges/blessings of life with PD can be found at shakypawsgrampa.blogspot.com. For information on his book, which was written to facilitate communication between adults and children regarding serious illness, visit http://www.innovopublishing.com/Featured-Book-Shaky-Paws-Grampa.html.