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 increases substantially. Caregivers can help people with Parkinson’s adjust to the disease’s effects on the body. And knowing that a loved one is cared for can help the entire family adjust 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.
Here are five ways to handle your role as a caregiver, without neglecting your own well-being.
1. Be Involved
Doctors strongly encourage caregivers to attend doctor’s appointments. Your input may help the doctor understand how the disease is progressing, how the treatments are working, and what side effects are occurring.
As Parkinson’s disease progresses, dementia may make the patient’s memory worse. By going to the appointment, you can help remind your loved one what the doctor said or instructed. Your role during this time is especially important to the treatment plan.
2. Establish a Team
Many family members, friends, and neighbors will be happy to help if you need to run errands or just take a break. Keep a handy list of people you can call on occasionally when you need help. Next, designate whom you should call for certain situations. Some people may be more helpful with certain tasks, like grocery shopping, mailing packages, or picking up children from school.
3. Look for a Support Group
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 your personal life with caregiving can be difficult. Many caregivers will face periods of feeling guilty, angry, and abandoned.
Of course, you don’t 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 your local hospital’s health outreach office for contact information for a 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. They also provide an opportunity to share suggestions, ideas, and tips among the group members.
4. Seek Professional Assistance
Especially in the latter stages of Parkinson’s disease, caring for your loved one may become more difficult. When this happens, you may need to seek professional care. Certain symptoms and side effects of Parkinson’s disease may be best treated with professional assistance or home health nurses, or in a nursing home environment. These symptoms and side effects include difficulty walking or balancing, dementia, hallucinations, and severe depression.
Several organizations, including The National Alliance for Caregiving and the National Family Caregiver Association, provide assistance and care specifically to caregivers. These caregiver support groups offer education seminars, enrichment resources, and connections to other individuals in similar situations.
5. Care for the Caregiver
Parkinson’s disease begins very slowly, and typically starts with a small tremor in one hand or difficulty walking or moving. Because of this, the role of caregiving is often thrust on a person with very little warning or preparation. It’s important for the caregiver to become familiar with all aspects of the disease. This will ensure better care for the patient and an easier transition for the caregiver.
When a loved one is diagnosed with Parkinson’s disease, treatment for the disease should begin almost immediately. This is a time of major change not only for the person with Parkinson’s 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 24/7. You’ll likely feel as if your entire world revolves around your loved one, while your personal life takes a backseat.
As the physical demands of caring for a loved one increases, many caregivers neglect their own health. Remember to take care of yourself. Eating a balanced diet, exercising regularly, and getting proper sleep are just three things you can do to stay in shape.