Coping with the Unspoken Reality of Caregiver Guilt

Woman Providing Comfort to Caregiver

Rarely a day goes by that we don’t hear of someone called a hero for some amazing, unselfish and benevolent act.

While that praise is likely deserved, there are countless unsung heroes in our societies who often are overlooked. Some of these champions include our unpaid caregivers: Ordinary people accomplishing extraordinary, heroic acts each day for those they love.

Home caregivers seldom seek recognition or reward for their efforts. They go to incredible lengths to improve the lives of others — often at the expense of their own health.

Despite the good deeds performed by these wonderful fathers, sons, mothers, daughters, brothers and sisters, they are sometimes plagued with guilt. It’s incredible to believe, isn’t it?

I never would have known that until I became a caregiver.

My caregiving journey began when doctors diagnosed my husband, Brian, with pleural mesothelioma. His prognosis: Less than nine months. It was shortly afterward that I felt my first feeling of guilt.

Feelings of Guilt Start to Surface

It began during a conversation Brian and I were having with a friend who was visiting.

Out of the blue, our friend said something funny, and without thinking, I started laughing. I felt guilty almost immediately and clamped my mouth shut. It did not feel right for me to laugh when Brian was dying.

As I struggled with my guilt, Brian laughed his head off. Ironically, this didn’t bother me. His enjoyment made me happy, and his laughter was the sweetest sound in the world.

During the two years before Brian’s death, there were a number of occasions when I felt guilty over something I thought, said or did. Most of the time, this was triggered by thoughts of my own well-being, expressing happiness, or wishing that Brian’s suffering could come to an end.
Though I didn’t realize it then, I was not the only caregiver who felt this way. The Family Caregiver Alliance shows it is common for caregivers to feel guilt, and most times it’s completely undeserved.

Blaming Your Own Good Health

Witnessing the physical decline of a loved one is heartbreaking and can make the caregiver feel guilty about their good health and physical strength.

Some caregivers might cease participating in outdoor activities and sports as a way to sympathize with the slower pace of their loved one.
Although these feelings are understandable, no one should feel guilty about caring for themselves. The American Heart Association shows regular exercise is very important to our overall health and helps to prevent heart disease.

If playing sports or exercising at the gym is no longer possible, a 30-minute walk to breathe in fresh air each day can be beneficial to our physical and emotional health.

During my caregiving journey, I tried remaining as active as possible and eliminated my guilt by acknowledging the importance of my health. Without it, caring for Brian would have been impossible.

Showing Enjoyment

Knowing what to say or how to act around someone who is terminally ill can be extremely difficult at times. It can result in the caregiver feeling guilty about showing signs of joy.

I felt that when I was caregiving for Brian. I have understood, however, that I should not have felt guilty for laughing in his presence. Despite his prognosis, Brian refused feeling unhappy all the time and didn’t want me feeling hopeless either.

In reflection, Brian might have felt guilty for the sadness his illness had caused for me. That is the last thing I would have wanted.

Thinking back to the day I spontaneously laughed, I wish I would have laughed with him, instead of quickly closing my mouth. I know now this would have been good therapy for both of us.

Thinking a Loved One’s Death is Best Solution

No one wants to see a loved one suffer, especially if their disease has no cure and their deteriorating condition makes it impossible for them to enjoy any aspect of their life.

Thinking that death is the only way to end their loved one’s suffering can make the caregiver feel intense emotions of guilt.

After the second year of battling mesothelioma, Brian became bedridden. I hated seeing him this way and wanted his suffering to end.

I fully understood that was only possible through his death, but it still caused me great guilt.

No One Is Perfect

Although nobody ever said that caregivers must be perfect, many caregivers aspire to reach a level of perfection. It often results in setting unrealistic personal goals that lead to feelings of guilt when they learn those benchmarks are unattainable.

Time is precious when a loved one is terminally ill, and it is important to spend as much loving time together as possible. The physical burden of caring can overwhelm the caregiver, causing them to feel exhausted and short-tempered – ultimately impacting the time they share with their loved one.

If you are caregiving for a terminally ill loved one, don’t be a martyr. Set realistic goals for yourself, and reach out for help when needed — without feeling guilt. A lighter workload will give you more time to enjoy your loved one’s company and the moments that you will later come to treasure.


Lorraine Kember is the author of "Lean on Me," an inspirational personal account of her husband's courageous battle with mesothelioma. She is an accomplished public speaker in Australia and is passionate about sharing her journey with cancer. Her website can be found at www.lean-on-me.net

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