For those who care for someone with Parkinson's disease

Parkinson's disease Caregiver Commentary

Let's have a Pity Party
By Susan Hamburger

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.

What is a pity party, you ask? Well, it is just what it sounds like, and believe me, at times it helps. Have you ever gotten caught up in feeling sorry for yourself or the caregiving situation you are in? Is this what you had planned for the golden years of your life? Do you get frustrated and angry? Do you ever feel overwhelmed with everything you have to do, without time for yourself? Does your natural optimism fail, being taken over by a very negative outlook? Does your get up and go get up and leave you? Do you feel like burnout is approaching? Well, my dears, what you need is a pity party.

Call some of your friends or family members and invite them to your pity party. I usually invite my close friends and/or people I know who are living in the same kind of situation – preferably those with a sense of humor. Stan is usually included, but the Parkinsonian can be excluded if you wish. Often one or two of my caregiver friends have the same feelings that I do at that time, so we make it a joint pity party. You set the time and date and make the plans. Sometimes I just call some friends and say, "Come over now, I need a pity party!!"

What do you do? First we have a few snacks and the drink of our choice – I prefer champagne and Stan likes Coke. Then do whatever you want to do – you can tell stories about what you have to deal with, you may choose not talk at all about what you are going through, or you can try to determine who has done the most unpleasant thing or has had the worst feelings. Do whatever you want to. All I need is to have some friends come over and relax (with a little champagne), and that is enough to cheer me up. We end up laughing a lot and life seems so much brighter!

Why is it that something like a pity party can be so helpful to caregivers? It's because it provides something that we get little of, need desperately, and often don't know where to go for it. What helps me so much is getting VALIDATION and acknowledgement from other people that they care about you, that they understand what it is like to be a caregiver, how difficult it can be, and how frustrated we feel sometimes. Other people cannot realistically take away the problems we meet, unless they have a cure for PD, but just knowing that somebody knows, cares and understands is so therapeutic. You may not want to have a pity party (even though they can be fun). That's just my weird humor showing. But please do something to acknowledge that what you are doing is tough and let others know you need support. If it involves laughing together, it works like magic for me! There is nothing that makes me feel better than having someone who I know has been there, say something like, "I know what it's like," or, "I understand." And also remember this when you talk to other caregivers who are having a hard time. You can provide it for them too.

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 Biostatistician 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 Amercican 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.

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