Caregiver Do’s and Don’ts

All my life, I have resisted following the rules.  That probably began before I started school.  Early questions I posed to my mama included:  “Why do I have to stop playing to come indoors to eat?” and “Why can’t I watch Daddy kill that chicken?”  It continued at school when I couldn’t understand why some of the other girls were “so sensitive.”  My first grade teacher called my mother to report a playground incident where another little girl had complained that I “hit” her.  In my mind, it was just a “friendly slap,” so what was the big deal?  I was in big trouble with my teacher, but surprisingly, my mama somehow understood and went easy on me, which was unusual.

There are no real rules for caring for a person with Parkinson’s, yet there are activities that must be performed to care for your loved one.  Medication schedules, physical therapy schedules, and doctors’ appointments all follow the “rules.”  However, before you can care for someone else, you must care for yourself.

Caregiver Do’s

1. Take care of yourself.  This means ensure that you get enough sleep, consume a proper diet, and exercise appropriately for your age and physical condition.  I have learned that a good walk can aid the mind as well as the body.
2. Maintain your activities outside the home as much as possible.  For me, this includes attending church and singing in the choir.  Not only is it a spiritual practice, it is also a physical release.
3. Ask for help.  In our case, this includes having an in-home caregiver.  Our son and daughter also help out when they can.  If you don’t have a caregiver or children, ask for help from friends and/or neighbors.  If others don’t know you need help, they cannot help.
4. Join a support group.  This will help you understand that you are not fighting this alone.  UT has a support group, and there is also one in Oak Ridge.
5. Keep records of all medications, doctors’ instructions, and therapy visits.  Watch for changes in your loved one’s condition so medications or therapies can be adjusted.  Having a computer with Excel comes in handy.  Try to keep detailed notes from all doctor visits and phone calls with nurses.  That can make a real difference.
6. Go easy on yourself.  If you’re like me, you are your own worst critic.  No human being is perfect, so forgive yourself if you think you’ve made a mistake.

Caregiver Don’ts

1. Don’t allow yourself or your loved one to give up.  It is said that no one dies from Parkinson’s; rather, you live with it.  That goes for the caregiver as well as the person with the condition.
2. Don’t obsess or worry about things you cannot change.
3. Don’t expect your world to be like it once was.  Serenity can be achieved through acceptance of your situation.
4. Don’t stay with a physician if you think he or she isn’t helping your loved one.
5. Don’t maintain a medication regimen if it isn’t working, but consult with your physician for changes.
6. Don’t lose Faith.

Some days the “rules of Parkinson’s” seem to change.  Every day will be different, so being able to accept things as they come along will help you.