Do you realize how much you do?
- You help maintain the quality of life for your spouse, parent, family, or friend with Parkinson’s disease.
- You become educated about symptoms, treatments, and the progression of the disease.
- You might keep track of medicine schedules, appointments with the doctor, and amount of exercise.
- You offer the love and support necessary to meet the challenges of Parkinson’s disease.
You are a caregiver. While many patients retain their independence after being diagnosed with Parkinson’s disease, some might need more help with daily activities. For others, the diagnosis might come after weeks or months of coping with symptoms that did not have a name. Regardless of how long you’ve been dealing with Parkinson’s disease or to what degree, in some way Parkinson’s has affected your life and responsibilities — physically, emotionally, and/or economically.
The role you have taken on is not an easy one. However, the following tips offer some guidance on how to maintain and improve your caregiving relationship:
- Take time for yourself. Make sure you have time to relax. If necessary, enlist the help of other family members or even hire someone to help out.
- Learn as much as you can about your loved one’s disease so you will know how you can help. You’ll also understand what changes to expect in your loved one’s behavior or symptoms.
- Help your loved one participate in as many activities as possible in the home and outside the home. Maintain the intricate balance between helping your loved one accomplish a task and actually doing the task for him or her. Allow your loved one the time needed to complete daily activities, such as dressing, on his or her own.
- Consult your loved one about his or her family affairs. Although it’s not easy to discuss these topics, you should be informed of your loved one’s wishes regarding a living will, durable power of attorney, and do-not-resuscitate (DNR) order.
- Set realistic goals for yourself and your loved one. Do not attempt to do everything. By setting attainable goals, you are setting everyone up for success, rather than disappointment.
- Do not put your life on hold. Continue to meet with friends, participate in hobbies or groups, and maintain a schedule as normally as possible. You will not only feel more energized, in the long-run you are less likely to feel resentful.
- Have someone you can talk to. You are there for your loved one, to listen and to offer support, but you also need a support person. Talk openly and honestly with a friend or family member. If this is not possible, join a support group. Understanding that you are not alone and that someone else is in a similar situation helps you to feel nurtured.
Challenges of caregiving for patients with Parkinson’s disease
There are some unique challenges that a patient with Parkinson's disease confronts.
First, the disease is quite variable. There might be times when the patient can function almost normally and other times in which the patient might be very dependent. This is a natural part of the disease. Also, the patient's response to medicines might fluctuate. There is a natural tendency for a caregiver to suspect that the patient might be unnecessarily demanding or manipulative. The caregiver might see the patient functioning normally but then assume that the patient should always be able to function normally.
Second, Parkinson's disease is a progressive disorder. While medicine and surgery can provide significant relief of symptoms, they do not stop the progression of the disease.
Third, depression is very much a part of the disease. The chemical changes that occur in the brain that cause the slowness of movement or tremor also increased the risks for depression. Parkinson symptoms and disability can be made worse by depression, so it is important to recognize the signs and symptoms of depression and help your loved one seek treatment promptly and treat depression aggressively.
The most effective caregiver is well-informed, prepared, and ASKS for help and support from all resources that are available!
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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 9/20/2005
