Tips for Caring for Someone with Parkinson's

It’s always devastating when a loved one is diagnosed with a life changing disease like Parkinson’s.  While naturally, people tend to gravitate towards providing comfort, resources and coping mechanisms, there is always someone else that needs to be thought of: their caregiver.  

Early on in a Parkinson’s diagnosis, patients will be able to go about their daily lives without much change.  They may notice that a few things that might be difficult to do, or that they may need more time to accomplish simple tasks, such as tying their shoes. As the disease progresses so will the patient’s need for help.

The role of caregiver typically falls into the lap of a loved one: family member, partner or close friend.  As devastating as Parkinson’s is because of what it does to the patient’s body and mind, being a caregiver for someone who is dealing with the disease can be as equally challenging and rewarding.

Often, caregivers will throw their heart and soul into caring for their loved one. It becomes very easy to lose yourself to the role of caregiver, especially when caring for a patient who is battling a progressive disease like Parkinson’s. As the patient’s health deteriorates, the caregiver’s time will be taken-up to a full-time, twenty-four hour a day, seven day a week role.  

Here is a list of ways to make caring for a Parkinson’s patient a little easier.

Know your stuff

For patients and caregivers it can seem like information regarding Parkinson’s is thrown at them at lightning speed after a diagnosis. Decisions need to be made quickly, forms signed, protocols put in place - it can be overwhelming and discouraging. When this happens, as the caregiver, take some time to ensure a full understanding of the disease. Don’t be afraid to ask the medical team and the patient questions. Read medical journals and visit trusted internet sites to get information on Parkinson’s and its effects. Having a broad knowledge of Parkinson’s will make it easier to advise the patient and when the time comes to make decisions with regards to care and next steps.

Organization is key

Caregivers need to know where everything is and keep track of all important documents.  The amount of paperwork that comes with a diagnosis of a disease like Parkinson’s can be incredibly frustrating to manage.  Caregivers need to have copies of medical records, wills, insurance documents, recommendations, dietary needs, allergies etc.  A good way to keep track of these documents and the ones that come with researching the disease itself is to keep a binder. Create a special binder for the patient that has copies of all important documents, phone numbers, and any other information that is required.  Keep a notepad and pen tucked into the inside pocket of the binder so that note taking at appointments can be done quickly. Keep the binder in an easy to access area and always bring it along to appointments of any kind. Keep a second copy of all documents tucked away in another location - that way if the binder were to be misplaced or left behind, the caregiver won’t have to dig around trying to recreate it.