“If caregivers have no boundaries and just blindly do whatever is asked of them at all times, they may burn out before they know what’s happening.”
—ANONYMOUS, PARKINSON’S CAREGIVER
It’s not uncommon for caregivers to have challenges setting limits. It’s easy to fall into a pattern of saying yes to just about everything your loved one asks you to do. Many say yes before thinking about what might be involved or what they might be committing to.
There are many possible reasons we caregivers do this: we love our spouse or parent so much and don’t want to disappoint them; we love being needed; we are a helper-type person and like to fix problems; we feel responsible for the happiness of our loved one; we feel guilty if we say no; we don’t want to be seen as neglectful, or we think we’re superwoman and should be able to do everything.
Though these are all noble reasons for not setting limits, if you want to make it in this caregiving journey, it is essential that you carefully examine your life and set clear boundaries. In setting these boundaries, you may have to put limits on your time, money, space, or strength. Doing this will make you a stronger caregiver, one who can recover from or adjust easily to hardships or change.
Having boundaries in place that work for everyone can help caregivers continue to care while showing love and concern without feeling desperate, enabling their loved one, or trying to rescue, fix, or control them.
The following strategies can help you set boundaries.
Early in your caregiving journey, have an honest talk with yourself. Think about how much of a commitment you are willing and able to make, and what you can and will do. Remember, caregiving is a team effort with your loved one. Once you have things clear in your mind, have a family meeting to let them know what your boundaries are before problems arise.
Try to remember that caregiving is just ONE component of your life. Decide what matters most in your life and how you want to live out the rest of it. Do you want to maintain your career? How do you envision your marriage 5 or 10 years from now? Those who learn how to manage their personal lives end up being the best caregivers.
Evaluate your loved one’s limitations in relation to other available resources (friends, neighbors, paid help, etc.). Even though you may not always accept all of your loved one’s requests, let them know that you care about them. As much as you can, try to help your loved one maintain their independence, as this will keep them happier and healthier longer.
We want to provide for all of our loved one’s needs, but it’s almost impossible to do so. Stick to helping only in areas that you can manage positively. Giving help grudgingly will only leave you both angry and frustrated.
If your loved one asks you to do something that you consider unreasonable or simply more than you can manage, explain your position and suggest alternatives. Some people have trouble accepting the losses that can accompany Parkinson’s, but as tough as it sometimes may be, you need to remember that you’re not responsible for your loved one’s happiness.
You might think this sounds cold and unloving, but it’s not. Detaching simply means living a life that isn’t centered on someone else’s. It is the ability to be close to your loved one without giving up your independence.
To be detached is to recognize your loved one’s anger or frustration without taking it personally in terms of something you did or didn’t do. It’s avoiding jumping in right away to fix a complaint and instead expressing interest and asking them to offer solutions.
You can detach by making caregiving a smaller part of your life. Focus on personal fulfillment through hobbies, relationships, volunteering, getting active, or learning new things.
What motivates you to be a caregiver? Think about why you took on the role. Decide to make it something you chose, not something forced on you. Stay connected to your friends and family and the things that make you happy. Laugh and cry often, and be gentle when judging yourself. Most of all, try not to take yourself too seriously!
If you are caring for a spouse with PD, it’s especially important that you learn to set boundaries. You can read about the specific challenges of spousal caregivers and strategies to deal with them in chapters 35–39.