In a recent column, I discussed the stages of caregiver burnout to help us recognize if we experience these feelings. Caregiver burnout is very common, and we need to pay attention to where we are so we can try to prevent the next more serious stage of caregiver burnout. Remember, the stages are frustration, then depression and finally despair.

In this column, I’d like to make some suggestions to help prevent the depression and despair stages of burnout as much as possible. I am speaking from 21 years of caregiver experience with Parkinson’s disease. It is so vital to pay attention to your thoughts and feelings as this disease progresses so you will be able to be there in a healthy state of mind for your loved one when they need you the most.

I think the one thing that helps me the most, and it may be different for other people, is exercise. I do low impact aerobics and yoga at least two times a week, and I know that it helps me to relieve stress and always lifts any feelings of depression that I have. Sometimes I have to really force myself to do it, but I also know that afterwards I will feel better.

The next thing that helps me a great deal over time is getting some relief. I am fortunate to be able to have Whittley, who comes four days a week for four hours, but if that is not a possibility for you, it’s really important to get family, friends, neighbors, or anybody who is willing to relieve you of caregiver responsibilities, for a few hours at least. During those times I try to do the things that I WANT to do. It might be shopping, walking, errands, visiting with friends, writing columns or letters, surfing the Internet, reading, or ANYTHING that I feel like doing that helps me to feel like I live a normal life. That is really important for me, and I’m sure it is for all caregivers.

These two things have helped me personally avoid serious burnout. There are many other things that help:

  • Lighten up – A light-hearted approach to what you have to do and laughter will improve your attitude, reduce resistance to change, and make it easier to respond to troublesome demands. Remember what Abraham Lincoln said, “You’re about as happy as you make up your mind to be.”
  • Know yourself – We should balance our abilities against the nature of caregiving and figure out what is possible and what is not. If you know there are things you cannot or do not want to do, then work around them, enlist somebody else to do them, or decide whether they really have to be done. If you hate to cook, there are many other options to take advantage of. But the important thing is not to beat yourself up about not wanting to cook.
  • Get smart – The more you know about Parkinson’s and the strategies of caregiving, the more effective you’ll be in avoiding burnout. Your situation is unique, but ask others how they might handle certain things that are difficult for you. Share your caregiving problems with your loved one. Ask for their suggestions on how to make things easier for you. Seek to also understand their feelings. Be aware of what services are offered in your community – support groups, classes, educational material, home health care, etc.
  • Communicate – Speak up when things bother you. If you repress your concerns, you will sap your energy, increase your frustration, and bring on increased stress. Let other people know what you are going through. I started doing that recently and it was amazing how many caring responses, and, to my surprise, offers of help I got back from others.
  • Depersonalize – Don’t feel that everything that might go wrong is your fault. It’s important to keep an objective viewpoint and attribute to Parkinson’s or the difficult situation what is rightfully due. You are not a failure if you admit things are difficult, or if you seek professional help for yourself. Expectations for yourself must be realistic. You are the same person you used to be but the situation can make you feel very inadequate if you let it. Give yourself a break!!
  • Build a support system – One of the best things you can do for yourself is to maintain friendships – related or unrelated to PD – because they are a wonderful source of refuge and strength. Don’t ALLOW yourself to become isolated, no matter how hard it is sometimes to maintain social contact. Join a support group and open up about how you feel about caregiving. Enormous stress will build up if you do not have a strong support system. Call me if you have nobody else!!!
  • Think of something that might be on the edge of what you can afford or that feel you do not deserve but you really would like to have – GO BUY IT FOR YOURSELF! You deserve the very best!

Editors Note: Susan was caregiver to her husband Stan, diagnosed with Parkinson’s disease in 1980. He passed away on August 12, 2008 at the age of 73.

About the Author
Susan Hamburger earned a Bachelors Degree from the University of Wisconsin in Elementary Education, and two Master’s Degrees, in Educational Psychology and Biostatistics / Epidemiology. She has been a kindergarten teacher, a school psychologist, and retired as Bio-statistician at the National Institute of Mental Health.Susan has served on the Board of local Parkinson’s disease support group organizations since the early 1990’s. She has served Chair of the Patient Services Committee, Vice-President and President of the Washington DC area chapters of the American Parkinson’s Disease Association and the National Parkinson’s Disease Foundation. Susan has also spent many hours on Capitol Hill, lobbying our Senators and Representatives to increase the funding for Parkinson’s disease research.