Becoming a caregiver for someone with chronic pain or a movement disorder can be a life-changing step. But with the right preparation and expectations, it can be a step toward a fuller life for both you and your loved one.
The right information, guidance, and inspiration can help you be as prepared as possible in your new role. Keep reading for some important first steps that can help you get ready to provide the right physical, emotional, and personal support – for both your loved one and yourself.
When you’re caring for someone with chronic pain or a movement disorder, the first step is to find out just what kind of help your loved one will need. There may not seem to be a “right time” to bring up difficult topics, like tasks they may no longer be able to perform or activities they may have to give up. But as a caregiver, one of the best places you can start is with an open, direct, and honest conversation with your loved one.
Starting the conversation early can help ease potential challenges, pressures, and tough decisions. Understanding your loved one’s needs and keeping the lines of communication open will benefit both of you. You may find your loved one has already been searching for a way to start a conversation with you.
You know your loved one is facing a life-changing diagnosis: sometimes, that simple acknowledgment is one of the most important kinds of support you can offer. It can help someone feel understood, cared for, and loved. No matter how you start the conversation, make it clear that you know how real your loved ones’ challenges are – and that you care about their emotional and physical welfare.
Every person with chronic pain or a movement disorder has different needs, and there are just as many ways to care for them. They may need emotional support. They may need assistance with everyday chores that have become difficult, like grocery shopping or keeping their home tidy. Take a moment during your conversation to gently ask about different ways you can help, because some of these tasks may not immediately come to mind.
Sometimes, understanding someone’s needs requires reading between the lines. When a person is dealing with major life changes as the result of illness, they can feel isolated or depressed. It may be hard for them to find a way to express themselves or describe their condition or symptoms – so make sure to let them know you’re there for them, and that you’re ready to support and love them.
Let your loved one know that they are not alone – you’re ready and willing to help them focus on living a full, healthy life together.
After you’ve shared an open, honest conversation with your loved one, the next step is developing a long-term plan to help you be ready for day-to-day challenges and evolving needs. Good planning will smooth the path to living a fuller life together.
Whether your loved one is living with chronic pain or a movement disorder, your caregiving plan will be as unique as your relationship with your loved one. Your plan can be as simple as a list of daily tasks or as challenging as planning for full-time care. Together, you’ll need to create a plan that’s built around your loved one’s unique needs, their specific symptoms, and your plans and goals for your future.
However, there are a few important first steps you should take together no matter what. Taking these steps as early as possible will help set you up for success as a caregiver – and give you the peace of mind you need to ensure that both you and your loved one will always have the support you need.
You don’t have to do this alone. Make a list of people who are willing and able to help: family members, friends, and community members. Reach out to patient advocacy groups, clubs, and other local resources, too. Let them know your situation. Learn more about building your support team.
As a caregiver, there will be many times when you need to be able to answer important questions and provide critical information for your loved one. Make sure you have ready access to these key resources and documents:
Personal information:
Including your loved one’s address book or contacts list, and their other legal documents
Health information:
Including health insurance provider, a list of physicians, medical records and treatment history, medications, and your preferred pharmacy. Collect and organize these important resources as soon as possible. Having them available will make it easier and more efficient for you to make smart, informed choices for both of you.
If you didn’t already cover this in your first conversation about caregiving, make sure to do it now. Ask your loved one what their goals and needs are in the short-term – as well as for the future. Realize that these may evolve as their health and treatments change over time. Write them down and review them regularly, so you always share the same expectations for what you want and need from each other.
Whether your loved one has chronic pain or a movement disorder, their treatment needs may be very different and may change significantly over time. It’s important for you both to know and remember which treatments your loved one has tried, how those treatments have worked, and which treatments your loved one is currently taking.
No matter which condition your loved one is living with, taking these steps early on can help you both prepare to live the fullest life possible together. Depending on whether your loved one has chronic pain or a movement disorder, however, there may also be several other unique decisions and plans you may need to make as a caregiver. Keep reading to learn more about caring for your loved one’s specific condition.
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