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A Not-To-Do List For Caregivers of the Chronically Ill

Six items that belong on a not-to-do list for those unsung heroes: caregivers.

Wikimedia Commons
Source: Wikimedia Commons

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” is parent/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. 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. No wonder that men who are caregivers have such a high incidence of clinical depression.

It's not healthy for you to try and "go it alone." Even one friend in whom you feel comfortable confiding can make a big difference: one person to talk to about how hard this new and unexpected role is for you. The odds are high that this friend is waiting for you to reach out to him or her.

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.

In addition to grieving the loss of your own freedom, you may be grieving 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.

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. Buddhists call this mudita—feeling joy for other people who are happy. It's good for both of us for me to cultivate mudita.

4. Do not be reluctant to share your difficulties with the person you're caring for.

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.

If you've become as isolated as the person you're caring for, consider asking someone to take over your duties for part of a day so you can do something for yourself. If you don't know anyone personally to ask, many communities have programs that provide this kind of support.

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 Alliance, Empowering 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.

6. Do not neglect your own health.

You can’t be an effective 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.

© 2014 Toni Bernhard. Thank you for reading my work. I'm the author of four books, including How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Second Edition) 2018 and How to Be Sick: Your Pocket Companion (for those who've read How to Be Sick and for those who haven't). Available May 2020

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