Parkinson’s Disease is a lifelong condition that is mostly associated with loss of movement through shaky/jerky movements, stiffness, and difficulty with coordination. But beyond the loss of movement, there are also non-movement symptoms such as difficulty digesting, irregular blood pressure, and fatigue. Parkinson’s Disease is also progressive, which means it starts with mild symptoms that get worse over time. Caring for someone with Parkinson’s Disease is an extremely difficult endeavor – this disease is a cruel one and it manifests itself differently in each individual. In this article, we hope to provide you with tips and resources for caring for someone with Parkinson’s Disease.
What is Parkinson’s Disease?
“Parkinson’s Disease occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die.” – Michael J. Fox Foundation
What Causes It?
According to the National Institute on Aging, scientists are still not sure what causes these brain cells to start dying, but it has been previously linked at times to genetics (especially in early-onset cases) or gene mutation, but in most cases, it appears to happen at random.
How Do You Care for a Loved One With Parkinson’s Disease?
Since Parkinson’s Disease is a progressive disease, it is frequently the case that the role of caregiver will start small and grow or change over time as the disease progresses. The early years are more commonly associated with mental health concerns, and later care becomes centered around the physical symptoms. Here are some ways to prepare now for your role and its changes while caring for a loved one with Parkinson’s Disease.
- Learn about the disease. It’s worth taking the time to understand the typical path of this disease and come up with a plan should those symptoms manifest. Knowing as much as you can about the disease, any potential treatments, potential medications and their side effects, etc. will help to reduce the stress and fear of the unknown in caring for someone with this disease.
- Communicate with your loved one. There’s a special set of challenges and a unique learning curve in caring for someone with Parkinson’s Disease. There will be times that will require patience and understanding – it’s difficult to realize when the loved one in your care needs your help, and when they don’t, and communicating about the difference between the two will help you both adapt.
- Stay alert for new or worsening symptoms. As touched on earlier, Parkinson’s Disease manifests differently for each person, so once you understand the symptoms, it’s important to look for signs of new or worsening symptoms or changes. These seemingly subtle changes are important to communicate with a doctor so they can be properly managed through medication or another form of therapy before they become hazardous. You can also communicate these changes with the loved one in your care – they may not recognize these changes in themselves.
- Be realistic about your ability to care for this disease over time. This disease puts mental and physical stress on you as the caregiver that may be beyond what you’re able to responsibly or reasonably handle. For example, if you’re caring for a spouse that is a larger human being than you, the physical demands of dressing, bathing, or lifting them will put you at risk of injury yourself. Similarly, if you have demands outside of caregiving (as most do) it’s important to know when to get help to supplement the care you’re able to provide.
- Take care of yourself too. Don’t forget to care for your own health as well – too often caregivers care for their loved one(s) at the expense of their own physical or mental health, which does both of you a disservice.
Resources for Caregivers
National Institute of Neurological Disorders and Stroke
Michael J. Fox Foundation for Parkinson’s Research
California Caregiver Resource Centers
April is Parkinson’s Disease Awareness Month. If you or a loved one is suffering from Parkinson’s Disease, you are not alone. It is a terrifying diagnosis and a challenging one to provide care for.
If you provide regular care to your loved one, we at CRC are here for you. As a caregiver, you’re faced with new challenges every day. The California Caregiver Resource Centers are a network of eleven independent 501(c)3 not-for-profit organizations across California. They were created with you both in mind and at heart to be a free resource as you navigate the challenging role you’re in. We would love to connect you with your local Center, where they can talk more about local programs for caregivers, answer your questions, and explain how they can best support you.Share this post: