A Not-To-Do List For Caregivers of Those With Ehlers-Danlos Syndrome

This article applies to all of those blessed caregivers helping their loved ones who are chronically ill.

by Toni Bernhard, J.D.

caregiver“In August 2013, I posted “A Not-To-Do List for the Chronically Ill.” It led me to turn my attention to those who take care of us. In a study published in the Journal of the Royal Society of Medicine, “Quality of life: impact of chronic illness on the partner,” JRSM, v. 94 (11) Nov. 2001, the authors stated:
…the most striking research finding is a tendency for the partner’s quality of life to be worse than that of the patient.The people who are least likely to be surprised by this finding are not just caregivers, but those who are in their care. The study focused on partners and spouses, but I’m certain that the finding would be the same when the relationship of caregiver and “cared-for” isparent/child, child/parent, sibling/sibling… or a host of other relationships.

From my own personal experience, as well as from feedback from others, I’ve learned a lot about the life of a caregiver (called “carers” in most countries other than the U.S.). If you’re a caregiver, here is my Not-To-Do list for you.

1. DO NOT shy away from sharing with others that you’ve become a caregiver.

The reluctance to tell others about this life-changing, high stress event is particularly prevalent among men. They’re likely to hide it at work. They often hide it from their friends. It’s a sad commentary on our culture that we still haven’t found a way to make men feel comfortable sharing with others that, when they’re at home, they’re taking care of a partner, a sibling, a parent, or a grown child. They’re doing the cooking and the cleaning; they’re running all the errands; they may even be providing nursing-type assistance.

The consequence of caregivers hiding their role is that people who’d be willing to help don’t even know that help is needed. Not only can this lead to caregiver burn-out, it also helps account for why caregivers have a high incidence of clinical depression. The National Family Caregiving Association found that over 60% of caregivers who provide at least 20 hours of caregiving a week suffer from depression.

If you’re a caregiver, I hope you’ll talk to others about your life. If you’re the one being cared for, encourage your caregiver to share with others the difficulties he or she is facing. No one benefits from a caregiver “going it alone.” It may take only one friend to make a significant difference in a caregiver’s life: one friend whom he or she can confide in and talk to about how stressful and difficult life has become; one friend whom he or she can ask for help and support. “Troubles shared are troubles halved” is one of those good clichés.

2. DO NOT pretend that everything is like it used to be; you need time to grieve the loss of your old life.

Many people (including myself) have written about the need for the chronically ill—including those in chronic pain—to go through the same type of grieving process that’s triggered by other life-disrupting events, such as the break-up of a relationship or the death of a loved one.


If you’re a caregiver, you need time to grieve too.The drastic change in your life can be a shock. One day you were free to go out whenever you wanted and hang out with whomever you wanted. The next day, you were tied to the house and expected to understand how to take care of someone who may need help with the most intimate of life functions. Our culture does a poor job of preparing people for this very real possibility. (An estimated 45 million people in the U.S. alone are caregivers for elderly relatives or the chronically ill.)

In addition to grieving the loss of freedom, you may be mourning the loss of the relationship you once had with the person you’re caring for. In my life, except when we were at our respective jobs, my husband (also named Tony) and I used to do almost everything together. Now when he goes out, he almost always goes out alone.

This past Christmas, Tony went to a holiday party—by himself. He rarely goes to these events anymore, but the couple who were hosting it issued a special invitation to him, so he went. He saw people from our smallish town whom he hadn’t seen for years. This is the type of event that would have been fun for us to “compare notes” about afterward. Instead, when he got home, he told me who was there and how they’d all asked how I was doing (a question that, once answered, tends to be a conversation killer, even though people ask with the best of intentions).

Pretending that everything is like it used to be doesn’t work: caregivers need time to mourn the loss of their old life and to adjust to their new one.

3. DO NOT attempt to be Super Caregiver.

Let yourself have “bad” days when, even though you’re doing what needs to be done for the person you care for, your heart isn’t in it and you wish you were free of the obligation and the burden. Don’t feel guilty if resentment arises now and then. Like everyone else in this life, you’re going to have good days and bad days.

On the flip side, don’t feel guilty when you have a good time. Be on the alert for that Super Caregiver mentality that has you thinking you’re not an adequate caregiver unless you’re giving the person in your care 100% of your attention and unless you’re sure never to have more fun than he or she is having.

Speaking personally, I want Tony to have a good time. It makes me feel less bad about the drastic change in his life and about the responsibilities he’s had to take on. As an added bonus, it makes me happy to know he’s having fun. Buddhists call this mudita—feeling joy for other people who are happy. It’s a practice to cultivate, and a wonderful side-effect ofmudita is that feeling happy for Tony often boomerangs, meaning it comes back at me so that I begin to feel happy myself, as if I’m having a good time through him.

A few weeks ago, he took our granddaughter, Cam, to see the Harlem Globetrotters. When I was growing up, my dad took me to see the Globetrotters whenever they came to town, so it would have been a treat for me to take Cam. But I couldn’t, so Tony did. My choice was to beenvious and resentful—or to be happy for Tony. I chose the latter. And so, throughout the afternoon, I imagined the two of them in their seats—Tony pointing out a dribbling sleight-of-hand that Cam might have missed, both of them laughing at the Globetrotters’ antics just as I had. The result was that I felt joy myself, especially knowing that my caregiver was having a good time.

4. DO NOT be reluctant to share your challenges and difficulties with the person in your care.

Of course, every relationship is different, but sharing your struggles with the person you’re caring for can make the two of you closer, despite the many changes in your lives together.

Many caregivers are reluctant to share their difficulties for fear of making the person in their care feel worse. But sharing your struggles and even your sorrows can make the “cared for” person feel as if he or she is giving you emotional support. As a result, not only will you get that support, but the person you’re caring for will feel as if he or she is contributing to the well-being of the relationship. In addition, there may be important issues, such as financial constraints, that badly need to be talked about in order to avoid harder times down the road.


5. DO NOT become isolated yourself even if the person you care for is housebound.

Caregivers are often as isolated as the person they’re taking care of. If this is the case for you, consider asking someone to step in for part of a day so you can do something for yourself. Many communities have programs that provide this kind of support. In my town, there’s an organization called Citizens Who Care. They have a program called Time Off for Caregivers. Volunteers visit people’s houses for the specific purpose of allowing a caregiver to go out for a while.

There are also online support groups for caregivers that can go a long way toward easing isolation. Here are three organizations that can help:Family Caregiver AllianceEmpowering Caregivers, and The Well Spouse Association. Connecting with others in this way benefits both you and the person you’re caring for, because it puts you in touch with others who understand the challenges you’re facing. Not only can this uplift your spirits and renew your commitment, it can also provide valuable information that will make it easier for you to carry out your responsibilities.

6. DO NOT neglect your own health.

You can’t be an effective a caregiver if you don’t care for yourself physically and emotionally. Ignoring your own physical and mental health can negatively impact both you and the person you’re caring for.

Caring for yourself is part of being a good caregiver for another.”

A caregiver needs to care for themselves first to assure they are prepared physically and emotionally to provide the care for those in need.  

Click here for the original source of this article

We appreciate your Likes and Comments

Leave a Reply

Your email address will not be published. Required fields are marked *

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

View Results

Loading ... Loading ...
%d bloggers like this: