Caregiver Guilt: The Thought That I Am Not Doing Enough

Caregiver guilt is very common among relatives who cannot keep up with everything. Read where this feeling comes from and gentle ways to cope with it daily.

At midnight, buying a tea from the vending machine in a hospital corridor, you think of the children you left at home. The next day, on your way to work, it is your heart that aches because you are not at your mother's bedside. And in the evening, when you have half an hour's coffee with a friend, the thought "I'm here laughing while she's suffering" spoils the moment. One of the feelings most commonly experienced by people caring for someone with a serious or long-lasting illness is guilt. Caregiver guilt often begins with the sentence "I'm not doing enough", and however hard you work, it does not go quiet. In this article I look at where this feeling comes from, the forms it takes and how you can carry it without denying it, but also without being crushed by it.

Where Does Caregiver Guilt Come From?

Guilt is, at its core, the feeling that "I did something wrong, or I didn't do what I should have done." When it works in a healthy way, it leads us to notice our mistakes and put them right. In the course of an illness, however, guilt is often fed not by a real mistake but by impossible expectations.

The list of expectations in a caregiver's mind usually goes something like this: they should meet the patient's every need instantly, never lose their temper, not neglect their job, not neglect their children, keep the house in order, answer relatives' questions, discuss every detail with the doctor, and do all of this with a smile. This list, which no human being could meet, produces a feeling of "failure" every single day.

Guilt has other sources too:

• The wish to control the uncontrollable: Someone who cannot change the course of the illness wants at least to feel they control one thing by being flawless at caregiving. Since every hitch shakes this sense of control, it gives rise to guilt.
• Looking back with "if only": Thoughts such as "If only I'd noticed the symptoms sooner" or "If only I'd taken her to another hospital" are a way of judging the past with today's knowledge.
• Family and social expectations: In Turkey, stock sayings such as "Caring for your parents is a child's duty" or "A proper daughter-in-law looks after her mother-in-law" can turn the caregiver's burden into a moral test.
• Discomfort at carrying on with your own life: Laughing, resting, going on holiday or not thinking about the patient even for a moment can feel like a "betrayal".

I discussed the function of guilt in general, and the difference between its healthy and unhealthy forms, in the article on feelings of guilt.

Common Forms of Guilt

In the relatives of patients, guilt can appear in different guises. Recognising some of them makes them easier to notice.

"I'm a bad person because I got angry with them"

Caregiving is tiring, and the patient can sometimes be difficult too: resisting medication times, refusing food, asking the same question again and again or directing their anger at the person closest to them. The anger felt in such moments is entirely human. Yet many relatives judge themselves mercilessly the moment they notice their anger: "How can I be angry with someone who is ill?"

"I'm ashamed because I felt relieved"

Sleeping through the night at home for the first time when the patient spends a week in hospital, feeling lighter on a weekend when your sibling takes over the care… This relief is the natural reaction of a tired body and mind. Still, the person may interpret it as "So I don't love them enough."

"It should have been me who got ill instead"

Parents whose child is ill, or people caring for a young spouse, may feel guilty about being healthy. This feeling is an expression of love and helplessness; but when it becomes constant, it stops the person from looking after their own body and life.

"I left them in someone else's hands"

Placing the patient in a care facility, getting support from a professional carer or leaving the role of hospital companion to another family member are frequent sources of guilt. Yet these decisions are often necessary for the patient's safety and for the caregiving to be sustainable. Remarks from those around you such as "You left her to strangers" can deepen this guilt; but whether a decision is right is measured not by what relatives say but by the patient's needs and the family's real circumstances. Professional care does not replace love; it makes room for love to continue in other forms, for example through old songs listened to together, visits with a home-cooked meal or photo albums looked through side by side.

How Does Caregiver Guilt Look for Different People?

The relationship with the person being cared for, and the caregiver's own age, change the shape guilt takes.

Parents of an ill child: The thought "I couldn't protect them" is very common. Guilt is added for neglecting the siblings, not having time for one's partner or giving up work. Between parents, guilt can sometimes turn towards each other: "You should have noticed sooner."

An adult child caring for an elderly parent: The "sandwich generation", with their own children and job on one side and an elderly mother or father on the other, constantly feel they are falling short somewhere. When the burden of care is not shared fairly among siblings, guilt and anger grow together.

Someone caring for their spouse: A person who has to see their spouse as both a partner and someone they care for may grieve the losses in the relationship while at the same time blaming themselves: "It's selfish to think about these things."

A young caregiver: A young person in their twenties caring for an ill parent may feel heavy guilt when they go out with friends or choose a university in another city. At this age, the tension between the need to build one's own life and family responsibility is very intense.

Children and teenage relatives: Children with an ill parent or sibling may believe that their own naughtiness or bad thoughts caused the illness. Children of this age need to be told clearly and repeatedly that it is not their fault.

The Difference Between Guilt and Responsibility

One important step in coping with guilt is to separate it from responsibility. Responsibility looks at the question "What can I do today?" and gets you moving: preparing a list of questions for the doctor, setting an alarm for medication times, drawing up a rota with your siblings. Guilt, on the other hand, usually looks at the past or at things you cannot change, and keeps you going round in circles.

Asking yourself the following questions can clarify this distinction: Is there really anything in my hands here? If so, what small step can I take today? If not, who benefits from my continuing to carry this weight? For example, the progression of the illness is not your responsibility; but setting a reminder so that a check-up appointment is not missed is within your power. Blaming yourself for the first wears you out, while doing the second gives you back at least a little sense of control.

Being able to make this distinction does not remove caregiver guilt entirely; but it reduces it to a more manageable size. It helps you become a fairer judge of yourself.

What to Say, and Not Say, to Yourself

Guilt is fed most of all by the voice inside us. The fictional examples below can help you notice the language of that voice.

Sentences you often say to yourself that add to the burden:

• "If I tried harder, everything would be better."
• "I have no right to be tired; they're the one who is suffering."
• "If I were a good daughter, I'd never complain."
• "If I go out even for an hour, I'm being selfish."

Sentences you could try instead:

• "I'm doing most of what I can; not being able to do everything shows that I'm human."
• "My tiredness is real; resting is part of caregiving."
• "Feeling angry doesn't mean I don't love them."
• "An hour to breathe means I'll be calmer beside them tomorrow."

The people around you may also add to your guilt without realising it. When remarks such as "What would he do without you?", "If you don't look after your mother, who will?" or "Going on holiday at a time like this?" put pressure on you, you have the right to set a calm boundary: "I'm doing everything I can, and I need to look after myself too."

Guilt tells you how much you love; but it has no authority to tell you how much you must do.

Practical Tips for Easing Guilt

• Make a realistic task list. Write down everything related to the care and next to each item note "only I can do this", "someone else could do this too" or "this can wait". Seeing that many tasks can in fact be shared can be a relief.
• Ask for and accept help. Ask siblings, your partner and neighbours for concrete support: a clear request such as "Could you take him to the hospital on Tuesdays?" works better than a vague offer of "Let me know if anything comes up."
• Test your "if only" thoughts. When you blame yourself for a decision made in the past, ask what information you had at the time. It was not possible for you to know then what you know today.
• Allow yourself small breaks. A walk, an episode of a series, a phone call with a friend; these are not luxuries, they are care for the caregiver. I have discussed why making time for yourself feels so hard in the article on carers making time for themselves.
• Share medical responsibility with the team. Remember that treatment decisions are not decisions you have to make alone. Take your questions to the doctor; making medical decisions together with the treatment team eases the worry of "What if I make the wrong choice?"
• Tell someone about your feelings. Guilt grows in silence. Being able to say to someone you trust, "Sometimes I get really angry and then I feel awful", helps you see how common this feeling is.

Let's say a forty-year-old woman has been caring for her father, who has been diagnosed with Alzheimer's, for two years. One evening, when her father asks the same question for the tenth time, she raises her voice; then, seeing the bewildered look on his face, she goes into the kitchen and cries. That night she cannot sleep, asking herself, "What kind of daughter am I?" The next day, when she rings her older brother and asks him to stay with their father at weekends, she feels guilty again. Yet both moments are signs that a person has reached her limit and is beginning to respect that limit; not that she is a bad daughter.

When Should You Seek Professional Support?

Feeling guilty from time to time while caring for someone is very common. However, the following signs suggest that this feeling is wearing you down and that support from a professional may be helpful:

• Guilt being so intense, almost every day, that it affects your sleep and appetite
• Allowing yourself no rest at all and neglecting your own health check-ups
• Constant tiredness, bouts of crying, hopelessness and a sense of worthlessness
• Finding it increasingly hard to control your anger towards the patient
• Guilt remaining intense for months after losing your loved one

I have discussed in detail how long-term caregiving can turn into burnout in the article on caregiver burnout. If you are having thoughts of harming yourself or of wanting to die, do not carry this alone; in an emergency, call 112 (emergency services). If depressive symptoms are prominent, an assessment by a psychiatrist may be important.

How Is Caregiver Guilt Addressed in Therapy?

In cognitive behavioural therapy, the thoughts that feed guilt are identified and their accuracy is tested together: what is the evidence for the thought "If I'd done more, they would have got better", which responsibility is genuinely yours and which is not? With techniques such as the responsibility pie, all the factors involved in an event are made visible; this way the person can recognise that taking on the whole burden alone is not realistic.

From a schema therapy perspective, beliefs some people bring from childhood, such as "I must put my own needs aside" or "If I make a mistake, I won't be loved", are strongly activated during caregiving. Recognising these beliefs makes it easier to show yourself compassion and to set boundaries. Acceptance and commitment-based approaches, rather than trying to eliminate guilt altogether, focus on helping you take steps in line with your values while the guilt is still there.

Individual therapy can be one of the rare spaces where the caregiver can make room for their own feelings alone. For relatives who cannot leave the patient's side for long, sessions can also be held online.

Frequently Asked Questions

Is it selfish to carry on with my own life while caring for a patient?

No. Protecting your own health, work and relationships is a condition for being able to sustain long-term care. When you wear yourself out completely, you can help neither yourself nor the person you are caring for.

I feel guilty for placing my loved one in a care facility. Will this pass?

Feeling guilty after this decision is very common, and it can soften over time. Remembering the circumstances in which you made the decision and the options you had to choose from, and keeping up your bond with your loved one through visits, phone calls and small rituals, makes this process easier. If the feeling stays intense for a long time, talking to a professional can help.

After losing them, I cannot shake the thought "I could have done more". What should I do?

Guilt is very common in grief and is fed by judging the past with today's knowledge. It is important to remember the circumstances and the information you were acting on at the time. If the guilt remains intense for months, getting support with your grief may be helpful.

My siblings do not take part in the care, and I feel both angry and guilty. Is this normal?

Yes, these two feelings often appear together. Talking with your siblings about a concrete division of tasks, expressing your expectations clearly and, if necessary, planning a joint family meeting can reduce the tension.

• #caregiver
• #family of a patient
• #guilt
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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