People with Parkinson’s disease rely on caregivers for a wide range of support—from driving them to doctor’s appointments to helping them get dressed. As the disease progresses, dependence on a caregiver will increase substantially. Properly caring for a loved one who has Parkinson’s disease can help him or her adjust to the disease’s changing effects on the body, and knowing that a loved one is cared for properly relieves a burden of worry and can help the entire family acquiesce to the diagnosis.
But the person with Parkinson’s disease isn’t the only one who should be cared for. Caregivers must take care of themselves, too. Being a caregiver can be a complicated and physically and emotionally draining experience. Learn how to handle your role as a caregiver without neglecting your own well-being.
Doctors strongly encourage caregivers to attend doctor’s appointments. Not only may you be able to help your loved one remember and understand what the doctor is saying, but your input and observations may also be helpful in providing the doctor a full understanding of how the disease is progressing, how the treatments are working, and what side effects you’ve noticed. As Parkinson’s disease progresses, dementia may make the patient’s ability to recall events harder and less clear. Your role during this time is especially important to the treatment plan.
Establish a Support Team
Many family members, friends, and neighbors will be happy to help if you need to run errands or just need a break. Keep a handy list of people you can call on occasionally when you need additional help.
Some people may feel more comfortable helping you with other tasks, such as grocery shopping, taking something to the post office, or transporting children between activities. If that’s the case, keep a running list of errands you can distribute among friends who ask. Every little bit helps.
Care for the Caregiver
Parkinson’s disease begins very slowly—a small tremor in one hand, difficulty walking or moving. For that reason, the role of caregiving is often thrust on a person with very little warning or preparation. When a loved one is diagnosed with Parkinson’s disease, treatment for the disease begins almost immediately. This is a time of major change not only for the person with Parkinson’s disease but also for you, the caregiver. Whether you’re a spouse, parent, child, or friend, your role as a caregiver is to be on call 24 hours a day, seven days a week. You will likely feel as if your entire world revolves around your loved one—in other words, you come second in everything.
As the physical demands of caring for a loved one increase, many caregivers neglect their own health. The needs and desires of the patient can supersede those of your own body, so ailments, signs of potential health problems, and preventive health measures, such as getting regular exercise, eating a balanced diet, and getting adequate sleep, often go ignored. Take care of yourself and your loved one. You’ll both benefit in the end.
Reach out for Professional Help
Caring for a loved one can be deeply satisfying—it’s a chance for your family to draw together as you face the challenges of Parkinson’s disease head-on. However, providing emotional and physical care for someone with an illness can become stressful and, at times, overwhelming. Balancing one’s own personal life and responsibilities with caring for a sick loved one can be difficult. Many caregivers will face periods of feeling guilty, angry, and abandoned.
You do not have to experience this alone. Support from other family members or professionals can help relieve stress, reevaluate approaches to treatment, and offer new perspective on the caregiving relationship.
Ask your doctor or call your local hospital’s health outreach office and ask for contact information for a local Parkinson’s disease caregiving group. The person you’re caring for will likely also benefit from being part of a support group. These groups allow for open communication with other people facing the same struggles you are, while providing an opportunity to share suggestions, ideas, and tips among the group members.
Especially in the latter stages of Parkinson’s disease, caring for your loved one may become more difficult—so difficult, in fact, that you may need to seek professional care. Symptoms and side effects of Parkinson’s disease, such as difficulty walking or balancing, dementia, hallucinations, or severe depression, may be best treated with professional assistance or home health nurses, or in a nursing home environment.
Several organizations provide assistance and care specifically to caregivers. These caregiver support groups offer education seminars, enrichment resources, and connections to other individuals who are in similar situations—all can help provide you with the best support for your current situation. These organizations include:
The National Alliance for Caregiving
National Family Caregiver Association
Family Caregiver Alliance