If you care for a Parkinson’s disease patient, you may not get the support and information you need for the job. When you go to the doctor, it is likely the majority of the visit focuses on the patient. However, caregiving is emotionally and physically draining. Being a caregiver is not all all gloom and doom. Many caretakers report satisfaction from being there for their loved one, and the insights they gain on life and themselves. Nevertheless, as a caregiver you confront sorrow, strain, pain, a heavy workload, resentment because your activities are limited, and other negative emotions. The late stages of PD introduce even more challenges, and being prepared may help you undertake them. At the World Parkinson Congress, co-presenters Richard Schulz, Ph.D., Barbara Stewart, Ph.D., and Dag Aarsland, M.D. discussed the implications of care giving. Their aim is to help caregivers translate preparedness into more successful caregiving.
Falls and Other Concerns
A caretaker's biggest fear was seeing their patient fall. How do I prevent falls? What do I do if they fall? What if I get injured trying to prevent or manage a fall? PD caregivers also reported worrying about:
- Paranoia
- Toileting accidents
- Getting through the night
- Finances
Things that Help
Dr. Aarsland concludes, “The most important findings from the literature about caregiving are that a caregiver's mutuality (ability to get along), ability to anticipate their patient’s situation, and their preparedness to handle the situation, are the greatest factors in reducing caregiver strain.” He states that caregivers can enhance these abilities by learning care giving skills, and balancing their lives with enjoyable activities. Dr. Aarsland also encourages caregivers to learn about the late stages of PD, so they are more likely to predict and prepare for their patient’s needs.
Caregivers’ Illnesses
One of the best things caregivers can do for the person they care for is maintain their own health. “Good health of the family caregiver can serve as a resource; but, poor health can make it more difficult to give care,” Stewart writes. She points to the research of other health care professionals and highlights surveys she has been conducting for 10 years. Stewart concludes that caregivers have higher rates of physical and mental illness than the general population. Schulz echoes her findings: “Being a strained caregiver increases your health risk by about 60 percent.”
If you take care of Parkinson's patients, a lot of this information is obvious. Feeling strained, challenged, or overwhelmed by your circumstances is normal. Most caretakers have similar feelings. If there is an aspect of caregiving this blog overlooks, please email your insight to mnilsen@myparkinsonsinfo.com. Your fellow readers could benefit from your insight.
