Having a loved one receive a diagnosis of Parkinson’s disease is a life-changing event for both them and for you. You may be thrust into a caregiver role, especially as the disease progresses. People with advanced PD may need assistance with basic activities like getting dressed, bathing, and using the bathroom. Currently, there is no cure for the disease and while medications can slow the disease, they lose effectiveness over time. This means you’ll need to be prepared for these changes before the stress causes you to burn out.
It is very important to know that no one is born a caregiver. Every caregiver has to learn how to do it well, and there will be mistakes made. This does not mean you’re a bad caregiver. Every challenge you learn to overcome will help you and your loved one have a higher quality of life. If you decide to become a caretaker of someone with PD, here are the basics of where to begin.
Educate yourself and your loved one about PD
You and your loved one must become familiar with the disease and what changes it causes. This will help you understand the symptoms, how they change over time, and what adjustments need to be made to home and routine to keep your loved one safe. Our CareMAP site at caremap.parkinson.org is a great place to start.
Ask your loved one what they need
One of the biggest mistakes that any caretaker can make is assuming what their loved one needs. Especially in the beginning, you should talk with your loved one to find out how much help they want and under what circumstances. If it takes them a long time to complete a task, give them extra time. They may not be ready to admit they need help yet. Many of the mental problems of PD don’t appear until 10-15 years after the first signs, so it’s most likely that you’ll be working with physical challenges in the beginning.
Find caregiver support
Some people do feel like they should do everything on their own or else they’ve failed as a caregiver. This is a huge mistake. No caregiver learns everything on their own. Your journey as a PD caregiver will go much more smoothly if you can talk with other caretakers. Find a support group, whether in person or online, and share your experiences.
Live your life too
Another mistake caretakers make is not setting aside any time for their personal lives. Caretakers who fixate too much on their loved one with PD can neglect friends, spouses, and even children out of fear of being considered a bad caretaker. You must find balance between your caretaking and the rest of your life.
Research medical equipment and home changes
There are many tools out there than can help people with PD maintain a high quality of life. Walkers, car assist handles, grab bars, and other medical equipment can help people with PD need less help, which also will reduce your stress levels and help you become a better caregiver. Also, you can do things to make a home safer like removing slippery mats, widening walkways to allow room for a walker, and putting kitchen equipment within arm’s reach.
Caretaking is difficult, but it can be much easier and more fulfilling if you take the time to follow these tips as you begin your caretaking journey. Remember, there is always help available. If you feel like the stress is becoming too much, find someone to talk to.