How to Help Your Ehlers-Danlos Caregiver
Caregivers are the unsung heroes in the life of the chronically ill. They offer critical support for patients living with Ehlers Danlos Syndrome. Learn 7 practical ways you can appreciate your caregiver and help them manage their additional responsibilities.
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 see 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 reasonably do for you and then, with them, ask for help.
Most caregivers have commitments they can’t ignore—commitments not related to their caregiving responsibilities. If nothing else, they’re likely to have a job they have to hold down. If you don’t discuss what it’s reasonable for your caregiver to do for you, given their non-caregiving responsibilities, your caregiver is likely to think that he or she has to doeverything.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. Once asked, they jumped at the opportunity.
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 “tick.” 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!
Although preserving the relationship you had with your caregiver before you became chronically ill may require careful planning, it’s worth effort because it provides the opportunity to do something emotionally nourishing and enjoyable for both of you. Perhaps the best reward for your effort will be that you’ll be doing something together that has nothing to do with the state of your health!
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, whether it be going to dinner with a friend, taking in a movie, pursuing a hobby, or reading a book.
If your caregiver brushes aside your attempts, say something like: “This is what I want for you. It’s important to me.” Let your caregiver know that it’s important to your well-being to know that his or her life is not just about caring for you.
If your caregiver is housebound much of the time because of the need to be close by to you, suggest new ways to do old things. For example, a caregiver can try staying connected to people through Skype or FaceTime on a smart phone. My husband uses Snapchat with our granddaughter Malia because he can’t see her as often as he’d like. Snapchat this crazy “app” where one of them takes a photo or makes a short video and sends it to the other one. As soon as it’s viewed, it’s deleted…gone! They have a lot of fun with it.
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. I think it’s beneficial to remind your caregiver of that universal law of impermanence and how it can be your friend.
7. Help your caregiver accept your new life.
Even if your condition doesn’t change for the better, you can help your caregiver find a measure of peace with this new life. Gently remind him or her that life sometimes takes unexpected and unwelcome turns. It does for everyone. Even though this is not how both of you hoped to be spending these years, it’s what the two of you have. The more you can accept it without bitterness, the more peace of mind you’ll find.You can look for ways that this new life has brought unexpected benefits with it—perhaps the opportunity to spend more time together or even the quiet of getting out of the rat race. Whatever benefits you can think of, share them with your caregiver and try to treasure and nourish them together.
Take special care of your loved one who helps you cope with Ehlers Danlos Syndrome. They are a blessing for all of us.
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