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It’s OK to Feel: The Emotional Side of Caregiving

By Lisa Weitzman | 02/16/2021

A caregiver embracing an older loved one

As Rosalynn Carter once said, “There are four kinds of people: those who have been caregivers; those who are currently caregivers; those who will be caregivers; and those who will need caregivers.” We each come to caregiving with different expectations and responsibilities which reflect our circumstances, the relationship we have with the loved one we provide care for, our ability to access the services and supports we may need, and other life responsibilities which we need to balance. We are also each called to caregiving for very different reasons. Some of us see it as our job or duty as a spouse or adult child. Others of us feel that no one else will step up, or that we are the most qualified based on our professional training. And some of us simply choose to serve in this role. While each caregiving experience is uniquely personal, it is also a journey that most of us will travel.

Regardless of how we became a caregiver, whether we chose the role or were assumed into it, most of us can agree on several things:

  1. Our responsibilities have shifted, and we are often asked to handle tasks far outside our comfort zone.
  2. The work is both physically and emotionally exhausting.
  3. It is not always clear where we are headed or what can we expect along the way.
  4. The role involves so many emotions, emotions that are often considered taboo, and we rarely even let ourselves think about them.

The reality is that caregivers experience a wide range of emotions, from ambivalence and resentment to anxiety, grief, loneliness, fear and even joy—often within the same day. We are conditioned to believe, as one family caregiver so eloquently stated, that we “must always smile and never complain…It feels that if [we] complain, [we]’re inadequate or [want] to give up, which is never the case at all” (Cori Carl, What do you wish other people understood about caregiving? The Caregiver Space, 10/8/2017). And yet these emotions are normal, they are healthy, and we need to find ways to name them, to feel them and to express them.

1. Ambivalence

Let’s start with ambivalence. Sometimes caregiving feels like a blessing. We are honored to share this intimate experience with a loved one and cherish the added time we have together. At other times, though, caregiving may feel like a never-ending ordeal. These ambivalent feelings are actually a sign that we recognize the reality of our situation and our mind’s way of acknowledging all of the conflicting emotions we are trying to process.

2. Anger

Many caregivers may also struggle with anger. Let’s think for a moment about why we are so afraid of anger. For one, anger feels shameful: we should have better self-control. Secondly, anger feels selfish: we should be focused on our loved one’s needs rather than our own. And lastly, anger feels dangerous: we should always avoid conflict. The challenge is that the shoulds get in our way and prevent us from dealing with the frustration, resentment, sadness and worry that are common responses to caregiving. As the philosopher David Whyte once wrote, “We’re angry because we love, because we’ve lost something precious…and we are left to pick up the pieces and rebuild.”

3. Guilt

And then there is guilt. Guilt comes from the jury in our head that convinces us that, no matter what we are doing, we are never doing enough and accuses us of imagined or wholly unavoidable faults. As caregivers, we assume the expectations of our family, our culture, and our faith – and then serve as our own worst critic. The reality is that we are often forced to make difficult decisions, decisions which, by their very nature, leave room for doubt, internal conflict and regret.

4. Grief and Loss

Lastly, let’s touch on grief and loss. Often, we associate grief with the loss of someone – and then wonder how we can mourn a person who is still alive. But if we take a step back, we can see signs of other things that a loved one’s chronic illness has taken from us. Maybe it is the loss of control over our own life. Maybe is it the loss of our partner or parent as we knew them. Maybe we have lost our independence, or maybe we grieve the loss of our plans for the future. It looks and feels different than other grief because we have not experienced the physical loss of a loved one – but the sense of loss is real. Others may not recognize our mourning, leaving us all the more alone with our pain. This isolation then breeds anger, which leads to guilt, and the negative cycle continues to spin on itself.

We can, however, channel these emotions for good:

  • We can learn to gauge our feelings and use them as a guide to establish personal boundaries. Perhaps they can even motivate us to say “No” when we are so conditioned to saying “Yes.”
  • We can leverage these emotions to drive our advocacy efforts on behalf of our loved ones with medical providers, social service agencies and policymakers.
  • We can recognize that our emotions act as warning signs when our own wellness needs are not being met.

While the above may feel like good goals for the future, there are also steps we can take now to help us acknowledge, accept, and live with the emotional rollercoaster ride of caregiving:

  • Be realistic: Focus on what we CAN do.
  • Be practical: Set a series of small, achievable goals.
  • Build a care team and accept help: Connect with community resources, friends, and family.
  • Trust our emotions: They are valid and important.
  • Practice self-forgiveness: We are all human.
  • Recognize the imperative for self-care.
  • Connect with programs like WeCare…because you do, which offer support and resources for family caregivers and their loved ones.

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