Advice For PD Sufferers And Their Caregivers
Getting a diagnosis of Parkinson's disease (PD) can have quite an impact, not only on the person's life but that of their loved ones, friends and co-workers. For the most part, it is a family member or close personal friend that oversees the caregiver role when they become disabled with the disease and can no longer live independently. It is not just a caregiver role but rather a partnership between the PD patient and the caregiver.
This two-sided PD partnership evolves as the symptoms of the disease evolve. As the patient adjust to the varying symptoms and changes in physicality, so must the caregiver. Independence of the patient slowly erodes creating greater dependence on the caregiver. The relationship is dynamic and the caregiver must be fully aware and ready to accept more and more responsibility over the patient's life such as paying bills, chauffeuring to appointments, cooking, cleaning and more.
It is important to remember several things if you are in the caregiver role. First of all, your loved one's experience with Parkinson's disease is unique. Because this degenerative neural disease is chronic, there are always changes in the patient's condition and good days and bad. Because the disease progresses differently in people, do not look to other patients with the disease and imagine your loved one in that position in a few years. Secondly, you do not have to be trained professionally in order to do a good job as caregiver to your loved one with Parkinson's. Just like they are learning the ins and outs of the disease, you are learning the ins and outs of caregiving.
As the caregiver, assess your strengths and weaknesses and discover where you might need to improve in order to best fulfill your role. Look to outside support to fill in the blanks as needed such as support groups, friends or family spelling you so you can get a break and more. Remember that you are not alone Ė your loved one with the disease is right there with you and is as ambivalent as you are.
Here are a few things to remember when dealing with Parkinson's and caregiver duties:
1. Talk candidly about the disease with each other. It is important to know each other feelings so that when those bad days come along, you understand what they are going through and make allowances. Discuss how the disease is impacting each of your lives and how both of you plan to handle it.
2. Do not allow the disease to define who you and your loved one are. Place your personal relationship first whether it is man and wife, sister and brother or friend and friend. Your individuality is important as well so keep up each other's personal interests for as long as possible and find alternate ways to enjoy them if your Parkinson's loved one can no longer be active in some of them.
3. Respect each other's journey with Parkinson's as the caregiver and patient role is quite different. If your loved one wishes to wait to share the news of the disease with others, respect that decision. If they are not ready to learn more about the disease and delve into alternate treatments and such, respect that option but feel free to look on your own. When your Parkinson's loved one is ready to venture further, you will be ready at hand with more information.
4. Donít be afraid to ask for second or third opinions and respect your Parkinson's loved one if they are not quite ready to go forth with that move. Find a good doctor that listens to your loved ones problems and can answer questions to satisfy your needs.
5. Don't be afraid to ask for help for yourself or your Parkinson's loved one. If they are in denial and you are becoming depressed or over worked, you need help and they will eventually see that. Look to family and friends and even support groups in your area.
Each person's journey with Parkinson's disease, whether as a caregiver or patient, is different. As such, recognizing and respecting those differences is paramount to dealing with the disease.
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