I know how fortunate I am to have a loving caregiver. Although he may not see it this way, my illness has been as hard on him as it’s been on me. But he’s stuck around and he never complains about the extra burdens he’s had to take on. My heart goes out to those of you who don’t have someone to care for you in this way. This piece covers several ways in which you can ease your caregiver’s burden. It focuses on caregivers who are partners but, unless the care-for-one is a child, these suggestions can be used to help other caregivers, such as your children, parents, or siblings.
1. Be sure your caregiver is taking care of his or her own health.
There’s a tendency for caregivers to ignore any medical symptoms that they might develop that aren’t as severe as yours are. As a result, you may have to push your caregiver to seek medical help. And if your caregiver is being treated for something, even if it’s minor, don’t forget to ask how he or she is doing!
2. Speak honestly with your caregiver about what he or she can reasonable do for you and then, with them, ask for help.
If you don’t discuss what it’s reasonable for your caregiver to do for you, given his or her non-caregiving responsibilities, your caregiver is likely to think that he or she has to do everything.This can lead to caregiver burnout, caregiver depression, and can also compromise your caregiver’s health. This is why it’s essential for you and your caregiver to try and make an honest assessment of what he or she can reasonably do.
Once you’re done this, think about what you can still do for yourself and then talk with your caregiver about the people in your life who might be available to help with tasks that neither you nor your caregiver can reasonably handle.
You might start by looking at my article, “How to Ask for Help.” Many of us have been taught that it’s a sign of weakness to ask for help, but it’s not. When someone asks for my help, I’ve never thought, “Oh, she’s weak.” In addition, we tend to assume that if people wanted to help, they’d have come forward and offered. It took me years of illness to realize that people wanted to help but needed to be asked.
3. Find ways to preserve the relationship you had before.
Whether your caregiver is your partner in life or another family member, think about what made your relationship work. Perhaps it was as simple as enjoying a good laugh together. Although you may no longer be able to go to a comedy club or take in a funny movie, you can watch stand-up comedians on a television or on a computer screen. If you liked to play board games or cards, that’s something you may be able to do from the bed if you’re bedbound. If you liked to talk about certain subjects, such as politics or spiritual matters, pick the time of day when you have the most energy and engage your caregiver in conversation as best you can.
You may have to be creative here and think outside the box, as it were. I’ve found that being chronically ill seems to require a lot of out-of-the-box thinking! It also requires a lot of careful planning, but when it comes to preserving your relationship, it will be "planning time" well spent.
4. Encourage your caregiver to do things without you.
Caregivers are often reluctant to do enjoyable things for themselves. I think this stems from our “all or nothing” cultural conditioning. This leads a caregivers to think that that if they’re caring for another, they must make a 100% time commitment or they’re falling short on the job. Not true! Not only is this expecting to much of themselves, but it can lead to caregiver burn-out.
I hope you’ll take the lead in convincing your caregiver how important it is for him or her to take time for him or herself. You may have to help your caregiver think of creative ways to do things from the house. For example, you could suggest that your caregiver try Skype or FaceTime as a way to stay connected to people.
5. Be sure you let your caregiver know how much he or she is valued.
I’ve noticed myself getting complacent at times. I’ll be willing to passively accept a meal that my husband has cooked without stopping to reflect on how much care and effort went into preparing it—on top of all his other responsibilities. I’m working on treating each thing he does as a treasured gift and to saying, “Thank you.” Making sure your caregiver knows how much he or she is valued is a gift you can give in return.
6. Remind your caregiver that things may change for the better.
I’ve improved a bit since the early years of my illness. Yes, I still can’t travel, but I spend more time in the living room than I used to. Sometimes I’m able to go a café in the afternoon or out to an early dinner. It’s easy for me to forget what it was like the first few years after I stopped working when I was unable to spend any time out of bed.
These small changes have made life easier and more pleasant for my husband. You don't know what the future may bring. It's good to remind your caregiver that your condition may improve. It's possible!
7. Help your caregiver accept your new life.
Even if your condition doesn’t improve, you can help your caregiver accept with grace what's happened to both of you as a result of your illness. Gently remind him or her that life sometimes takes unwelcome turns. Even though this is not how both of you hoped to be spending these years, the more you can accept what's happened without bitterness, the better your live together will be. I recommend that you look for ways in which this new life has brought unexpected benefits along with it—perhaps the opportunity to spend more time together or to lead a more relaxed life. Whatever benefits you can think of, share them with your caregiver.
© 2014 Toni Bernhard. Thank you for reading my work. I'm the author of three books:
How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015)
Visit www.tonibernhard.com for more information.
You might also like “A Not-To-Do List for Caregivers of the Chronically Ill”