When You’re the Caregiver of One Who’s Ill

By James E. Miller

     You may have become a caregiver only recently, or you may have begun a long time ago. You may have taken on this role temporarily, or you may expect to have it as long as both you and the one for whom you are caring are alive. The two of you may live under the same roof, or you may not. You may be close, or you may be at a distance. This experience may be a labor of love, or a labor of loss, or a labor of obligation, or hardly a labor at all.
     Whatever your situation, you know that being a caregiver can be a demanding task, for many reasons. Our society idealizes self-sufficiency, yet the very nature of your circumstances may require you to turn to others for help. Your caregiving responsibilities may consume you, absorbing your time and your psychological energy and your physical stamina. You may find yourself overstretched, trying to handle commitments to your job, or to other family members, or to yourself, or, as is often the case, to all the above. You may feel ill-prepared to assume your role, or ill-equipped, or ill-suited.
     It’s quite possible you may be one who has a whole other response: you feel gratified you can help and you’re quite confident of your abilities. Your concerns may be minimal.
     These words are written for all of you.

Be with your feelings.

     You may be inclined to focus on the needs and the feelings of the one you’re caring for, at the expense of your own. That can be a natural reaction, especially as you begin this relationship, and especially if the other person is suffering. You want to do what you can and you would like to make things right for the other. So you may suppress your own emotions in order to carry out your responsibilities.
     Be aware: suppressing your emotions in the short run can be an act of love, but suppressing them over the long haul is a serious mistake.
     There are no prescribed feelings for you to have. Everyone experiences a time like this a little differently. No two people feel the same emotions, in the same sequence, with the same intensity. So don’t program yourself for what you will feel, and don’t let others program you either.
     With the understanding that none of these reactions may be yours, following are some that caregivers commonly report early in the process:
     Shock and confusion, sometimes including wondering if you’re going a little crazy.
     Anxiety and fear, about what is happening now, or what may happen in the future.
     Sadness or depression, especially if the situation seems overwhelming or discouraging.
     Anger, perhaps toward these circumstances, or the person you’re caring for, or whatever or whoever may have caused these events. You may be mad at yourself, or at people who are less than helpful right now, or at God.
     Guilt, about what you have done or not done.
     Grief, for what the other person has lost, and perhaps what you have lost as well. These losses may be visible and distinct, or they may be hard to pinpoint but no less real.
     The range and depth of your feelings will be related to your relationship with the other person, the seriousness of their condition, the impact this situation will have on your life, and many other factors. This experience may affect you very deeply, more deeply than you might have imagined.
     At the same time, you may find you don’t have as much support for your own feelings as you would like. People may be so concerned for the one who is ill or incapacitated that they forget you need attention as well.
     As your caregiving duties expand, other feelings may develop:
     Frustration and irritability, with so many pressures, demands, disappointments.
     Loneliness, as family and friends go about their lives without you.
     Shame, for the other’s condition, or for how you’re responding, or for needing help.
     Helplessness, for all the things you cannot do for the other.
     Exhaustion, on any level: physical, mental, psychological, or spiritual.
     Of course, you may have other more cheerful emotions, too:
     Joy, in being with the other.
     Gratitude, for what you’ve been given.
     Pride, in what you’ve been able to do.
     Love, for all the obvious reasons.
     Remember that all of your feelings are valid. Feelings are not right or wrong. They are simply signs that you’re human, that you’re engaged in life, that you care. So do what all healthy caregivers do: feel fully whatever it is you feel.

     Jim Miller has written eleven more practical chapters around the topic of being the caregiver of one who is ill or incapacitated in his innovative double book When You’re the Caregiver: 12 Things to Do If Someone You Care for Is Ill or Incapacitated. The other half of the book is entitled When You’re Ill or Incapacitated. More information about this and other resources is available here.

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