Caregiver guilt: why you feel it and what to do with it

Ask a room of caregivers who feels guilty and every hand goes up. Ask what for and the answers contradict each other: for not visiting enough and for dreading the visits, for keeping Dad at home too long and for moving him, for being angry and for not being angry enough at the sibling who does nothing. Guilt in caregiving is not a signal that something is wrong. It is the weather.

• Not doing enough. However much you do, it could be more. This guilt has no ceiling because the need has no ceiling.
• Resentment. You did not choose this, it is consuming your life, and you resent it. Then you feel guilty for resenting someone who is ill and did not choose it either.
• Losing patience. You snapped. You said something. You were short with a parent who asked the same question for the ninth time.
• Having a life. Going to dinner, taking a vacation, laughing, while they cannot.
• Moving them into care. The most acute form, and the one that makes families keep a parent home past the point of safety.
• Relief. When the hard week ends, when respite arrives, when they sleep. And, eventually, when they die. Relief feels like a betrayal. It is not.
• Wishing it were over. Almost everyone thinks it. Almost nobody says it.
• Old history. Unfinished business from decades ago, resurfacing as guilt about the present.

Much of what caregivers call guilt is grief. You are losing your parent, slowly, in pieces, while they are still here, and there is no funeral to organize the feeling. Anticipatory grief produces anger, sadness, numbness, resentment and relief, and a mind that cannot place those feelings blames itself for having them. Naming it as grief does not remove it, but it stops the second injury of judging yourself for the first.

Some of it is the gap between the standard you hold yourself to and any standard a human being can meet. Caregivers routinely expect of themselves what they would never expect of a friend in the same situation: infinite patience, no needs, no anger, no life. Ask what you would tell a friend who said she snapped at her mother after a sleepless night. Then say it to yourself.

Guilt becomes dangerous when it drives behavior: refusing help because accepting it feels like failing, keeping a parent at home past the point of safety, never taking respite, skipping your own medical care, tolerating abuse from a parent with dementia because “it is not their fault”, or doing so much that you collapse and then can do nothing. Guilt-driven caregiving produces worse care, because exhausted people make mistakes and lose patience, which produces more guilt. The cycle has to be interrupted from outside, usually by help.

1. 1.Say it out loud to someone who will not flinch. A support group, a counselor, another caregiver. Guilt shrinks when it is spoken and grows when it is hidden. Hearing “me too” from six people is more effective than any reassurance from someone who has not done this.
2. 2.Separate the feeling from the fact. Write down the specific thing you feel guilty about. Then ask: did I actually do something wrong, or did I have a feeling? Most entries are feelings. For the few that are actions, apologize if warranted and move on. Rumination is not repair.
3. 3.Set the standard you would set for a friend. Good enough is the goal. Perfect is not available.
4. 4.Get enough help that the load is realistic. Guilt about not doing enough is partly accurate when one person is doing what needs three. The fix is not more effort; it is more people.
5. 5.Take respite without justification. It is not a reward for good caregiving; it is maintenance that makes caregiving possible.
6. 6.Look at the decision, not the outcome. Moving a parent into care that is safer than home is a good decision even if they are unhappy about it. You are responsible for making reasonable decisions with the information you had, not for outcomes you could not control.
7. 7.Remember who you are to them. You are their child. The best thing you can give is a relationship, not flawless logistics. Hand off the logistics.

Guilt that is constant, that comes with hopelessness, worthlessness, sleep and appetite changes, loss of interest in everything, or thoughts that you or your parent would be better off dead, is not ordinary caregiver guilt. It is depression, which affects up to half of caregivers of people with dementia, and it is treatable. Tell your own doctor. Use your employer’s EAP. Call a counselor. If there are thoughts of harming yourself or the person you care for, call 988. You would tell anyone else to.