1. 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.
·
Kirk has written an article on this subject on his blog
which can be accessed at http://www.blogger.com/blogger.g?blogID=4043496383382565799#editor/target=post;postID=5852441669583448568
2. Communicate
·
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.
3. Learn
·
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.
4. 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 as 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.
5. 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.
6. Faith
·
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.
7. Patience
·
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.
8. Balance
·
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.
9. 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.
10.
Perspective
·
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.
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