As a caregiver of someone with Parkinson's disease, you have a lot to do:
- You help maintain the quality of life for your loved one.
- You educate yourself about symptoms, treatments, and the progression of the disease.
- You keep track of appointments with the doctor, medication schedules, and exercise.
- You offer the love and support necessary to meet the challenges of Parkinson's disease.
You are a caregiver. The role you have taken on is not an easy one. The following tips offer some guidance on how you can help your loved one.
- 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 assist you in providing care.
- Learn as much as you can about your loved one's disease. That way you'll understand what changes to expect in your loved one's behavior or symptoms and how you can best help when those changes occur.
- Let your loved one participate. Don't try to do everything for your loved one. Allow them the time to complete daily activities on their own, such as dressing.
- Consult your loved one about their 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. Don't 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 normal as possible. You will not only feel more energized, you will be less likely to feel resentful.
- Have someone you can talk to. You are there to listen to and support your loved one, but you also need a support person. Talk openly and honestly with a friend or family member. If that's 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 You as a Caregiver Are Likely to Face
There are challenges that a person with Parkinson's disease confronts. First, the disease can vary from day to day. There will be times when they can function almost normally and then other times when they will be very dependent. This is a natural part of the disease. But it can make a caregiver feel that the person is being unnecessarily demanding or manipulative. Keep in mind that Parkinson's is unpredictable and each day can pose new challenges for you and your loved one.
Also, keep in mind that Parkinson's is a progressive disorder. While medications and surgery can provide significant relief of symptoms, they do not stop the progression of the disease.
Depression is also very much a part of the disease. It is important to recognize the signs and symptoms of depression so you can help your loved one seek treatment promptly. And, if you are feeling depressed and having trouble coping, it's just as important to get care for yourself.
Communicating With Your Loved One
Parkinson's disease can make verbal communication very difficult for your loved one. That can get in the way of your ability to care for their needs. Here are some ways that can help you better understand your loved one.
- Talk to your loved one face-to-face. Look at them as they are speaking.
- In the case of advanced disease, ask questions that your loved one can answer "yes" or "no."
- Repeat the part of the sentence that you understood. (For example, "You want me to go upstairs and get the what?")
- Ask your loved one to repeat what they have said, or ask them to speak slower or spell out the words that you did not understand.