You may be the spouse, child or other friend or relative of a person diagnosed with Parkinson’s disease. Caregiving may not be a role you were expecting to fill in life, but it’s an incredibly valuable one. Making sure someone you love maintains the best quality of life possible, despite a serious health condition, can be a challenge.
It’s important to know you’re not in it alone. There are many support communities, organizations and resources available to help. An effective treatment plan is also one of your biggest assets.
Parkinson’s disease can be unpredictable. It’s hard to know which symptoms will appear, in what order, how severe they will be, and how quickly things will progress. It’s important to educate yourself, to be prepared. As a caregiver, you are your loved one’s most powerful advocate. So it’s important to surround yourself with the support and resources you both need, and to create a long-term plan.
Parkinson’s is a chronic progressive disease. That means caregiving for Parkinson’s is a marathon, not a sprint. It’s just as important to make sure your own physical, emotional and spiritual challenges are being addressed.
Caregiving isn’t limited to just physical assistance - although that becomes increasingly important in the later stages. In the early stages, your emotional support is more often what’s needed. Especially when you’re dealing with someone who has always seen themselves as a strong, independent person. They may have a hard time accepting assistance, or have difficulty knowing when they need it. Keep your loved one as involved in important decisions as possible, for as long as possible. Expect your role to evolve over time.
As a caregiver, you’ll help assemble a strong care team, from motor disorder specialists and neurologists to physical therapists and speech therapists. You will likely also be called on to help build, adjust and manage your loved one’s Parkinson’s treatment plan over time. This includes keeping things like doctor’s appointments and medication schedules organized.
When exercise is part of the treatment plan, you may need to offer encouragement, motivation and reminders to work out. It can be tough convincing your loved one to push their body’s limits every day. Keep reminding them that doing so is how you better control symptoms and keep Parkinson’s from making their limits more restrictive.
As a caregiver, you are coaching your loved one through the fight of their life. The reward is a better quality of life for both of you.