For those who care for someone with Parkinson's disease

Parkinson's disease Caregiver Commentary

Are you in danger of getting burned out?
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.

The capacity to care is what gives life its deepest significance and meaning To me, that's what makes life worth living, even when living with a cruel chronic disease like Parkinson's. We care about our loved one and as caregivers we provide the care and attention that allows them to remain at home, see to their physical comfort and safety, and try to preserve their dignity and self- esteem. I would not want to do it any other way – however this job is not just caring and handholding. It is difficult at times and can be exhausting work.

If you are like I am, you have had to take on everything in your household – cooking, cleaning, laundry, shopping, transportation, errands, personal care and hygiene, coordinating medical care, attending medical/dental appointments, handling insurance claims, giving medication, getting meds refilled, paying bills and managing investments, doing the taxes, doing or arranging for household repairs, in addition to providing emotional support and companionship and trying to take care of yourself. I am fortunate to be able to hire a few people to help me with some of this overwhelming number of tasks, so I am able to find a little time for myself and have not reached the point where I feel that I can no longer handle the burden. Well, sometimes, I get very stressed (physically, emotionally and mentally exhausted) and think that I can no longer handle everything, but I usually will bounce back. As the disease progresses, I find that those moments become more frequent, but fortunately they are not lasting a long time.

I'm sure there are others who know exactly what I am talking about. It's called BURNOUT. Caregiver burnout is very common and can cause you to change from a person who is positive and caring to one who is negative, angry and uncaring. I think it would be helpful to look at what the stages of caregiver burnout are and see if you have experienced any of them yet. In the next article I will discuss ways to prevent caregiver burnout.

It's not hard to understand why the first stage of burnout is frustration. That's a daily occurrence around my house – why can't he remember to do something he has done for years, he could do that yesterday, I'm doing the best I can do but it's not always enough, I didn't expect to have to do all of this, I told him to take his medication but he didn't, etc, etc. Any of this sound familiar? This type of frequent frustration can lead to ill health in the caregiver – more colds, headaches, insomnia, backaches, and anxiety. Some people at this stage begin to overeat or use alcohol or some other drug as an escape. Many begin to avoid social contacts.

The next stage of burnout is depression. Besides feeling sad and depressed, this can be seen in frequent crying, being easily hurt, getting angry and bitter, and overreacting with outbursts of hostility, inflexibility and resentment. At this stage it's critical for the caregiver to recognize what is happening and to reach out to others who understand what the situation is– friends, family, doctor, support groups.

Stage three of caregiver burnout is despair – feeling helpless, ineffective, cynical, adrift, unable to concentrate, etc. There is little joy in caregiving and it has become mechanical and forced. Situations that once produced a negative reaction now result in feelings of hopelessness. Some at this stage forego personal hygiene, feel little sense of accomplishment, and seem to have little sense of humor, lose interest in others and often keep to themselves.

To avoid reaching the last stage of caregiver burnout, it's really important for us to pay attention to what is happening to us. In most cases, the negative feelings that occur are common responses to uncommon stress and they are temporary. But with burned– out caregivers the feelings become generalized, occur more frequently and can become chronic. Burnout raises lots of red flags for you and others to see. Recognize them early, deal with them decisively and burnout may well be prevented. Watch for: alienation, irritability, withdrawal, lack of compassion, and a loss of hope, meaning and purpose. It is not uncommon for stages of burnout to overlap. Any combination of feelings and experiences can result in burnout if the caregiver or someone else does not recognize it and begin to intervene.

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.

Read more commentary...