Family Role Changes During Illness: When the Father Who Cared Needs Care

How do family role changes during illness feel? Advice on dignity, boundaries and guilt for adult children who have taken on caring for a parent.

The father who sat up all night at your bedside when you had a fever as a child now waits for you to remind him when to take his medicine. The man who taught you to ride a bike, slipped pocket money for school into your hand and made you hear "Ask your father too" with every decision now walks down the hospital corridor on your arm. For many adult children this picture is full of both love and a strange sense of grief. Family role changes during illness are not just a change in who looks after whom; they are a reshaping of the balance of power in the family, of familiar ways of relating and even of identities. In this article I look at what adult children who take on the care of a parent and feel that roles have been reversed go through, the inner world of the parent who has fallen ill, and ways of making this transition more dignified for both sides.

What Are Family Role Changes During Illness?

Every family has an order that, although unwritten, everyone knows. Who makes decisions, who earns the money, who cooks, who calms arguments, who takes everyone to visit the elders during the holidays? Over many years, these roles run almost automatically.

A serious or chronic illness changes this order, either suddenly or gradually. The father who was the pillar of the household can no longer go to the bank alone. The mother who listened to everyone's troubles now finds it hard to talk about her own. The adult child, meanwhile, becomes the parent's nurse, driver, accountant and spokesperson with the doctor all at once.

This change usually shows itself in these areas:

• Care and the body. The parent becoming dependent on their child in the most private areas, such as washing, dressing and using the toilet.
• Decision-making. The final say on matters such as treatment, money and how the house is run passing from parent to child.
• Emotional support. The person who once gave comfort now needing to be comforted.
• Position within the family. The balance between siblings, spouses and grandchildren being rebuilt.

This transition sometimes happens overnight: with a heart attack, a fall or an unexpected diagnosis, the family finds itself in new roles. Sometimes it stretches over years, progressing unnoticed through steps such as small lapses of memory, bills being missed or giving up driving. In sudden transitions shock comes to the fore; in slow ones, the bewilderment of "When did we get to this point?"

Although this is called "role reversal", your parent does not actually become your child; they are still your mother or father. What changes is the direction in which the relationship carries its weight.

The Inner World of the Parent Being Cared For: Dignity, Shame and Control

We usually talk about role change from the caregiver's point of view; yet for the parent being cared for, this experience is at least as shaking.

A parent who needs care may feel:

• A loss of dignity. The thought "My child is bathing me" is a source of deep shame, especially for a generation that places great importance on privacy.
• Fear of being a burden. The thought "They have their own lives and work, I've become a millstone around their neck" can lead them to hide their needs.
• An effort not to let go of control. Some parents resist this loss by interfering in everything, refusing help or reacting with anger. This attitude, which looks like stubbornness from the outside, is often a wish to protect what remains of themselves.
• Worthlessness. Someone who has been the "giving" side all their life may find it hard to bear being only on the "receiving" side.

Understanding these feelings helps the caregiving child not to take their parent's anger or resistance personally. A father insisting "I'll do it myself" is usually reacting not to you but to the strength he has lost.

Small ways to protect dignity

• Asking before doing something: "Would you like to wear your shirt or your cardigan?"
• Leaving to them what they can do, even if slowly: shaving as much as they can themselves, opening the pill box themselves.
• Including them in decisions: directing questions to them too when talking to the doctor, asking their opinion on decisions about money.
• Respecting privacy: closing the door, where possible having a family member of the same sex help with bodily care, and using conversation to draw attention elsewhere.

You can find more detailed advice on particularly sensitive matters such as bathing and personal care in the article on bathing an elderly parent.

The Complicated Feelings of the Caregiving Adult Child

Adult children who take on their parent's care usually experience contradictory feelings at the same time, and this contradiction is one of the things that wears them out most.

Love and anger together. On one hand you feel deep love and gratitude towards your parent; on the other, you get angry when they ask the same question for the tenth time or refuse your help. Then guilt follows: "How can I be angry? He's my father."

A grief experienced in advance. Your parent is alive, but the strong, decisive person who protected you, the one you used to know, has to some extent disappeared. The sadness felt at this loss is often lived through without being named.

Old wounds coming to the surface. Your relationship with your parent may not always have been easy. Caring tenderly now for someone who was harsh, distant or neglectful in your childhood can awaken unresolved feelings. The thought "He didn't look after me back then, so why am I looking after him?" is not something to be ashamed of but a feeling that needs to be understood.

Identity confusion. An adult who looks after their own children and carries responsibility at work can feel split into many pieces when they also become their parent's carer at the same time. I discuss the experience of this generation, who look after both their children and their parents, separately in the article on the sandwich generation.

A change of roles is not a lessening of love; it is love learning a new, and often harder, language.

Family Role Changes During Illness Affect the Whole Family: Siblings, Spouses, Grandchildren

This change is not only experienced between the parent and the caregiving child; everyone around them looks for their own place in this new order.

Between siblings

In Turkey, the care load often falls on the shoulders of the sibling who lives in the same city as the parent, is unmarried, or "lives nearby anyway". The expectations placed on daughters are also frequently heavier. Siblings who live far away may stay at a distance through guilt, helplessness or the defence "I send money, that's enough". When this imbalance builds up unspoken, it can lead to deep resentment between siblings.

Steps that can help:

• Holding regular, open conversations with siblings; writing down tasks name by name (who will take them to the doctor, who will keep track of the bills, who will be on duty at weekends)
• Giving the sibling who lives far away concrete tasks too: booking appointments by phone, following up official paperwork, coming in particular weeks to take your place
• Talking about feelings too: saying "I've been very tired these last months and I feel alone" is heard more easily than blame

For a broader framework on this subject, you can look at the article on sharing the care burden between siblings.

Between spouses

The spouse of the person caring for their parent may feel pushed into the background. A spouse's mother or father moving into the home changes the household routine, privacy and the time the couple spends together. It is important for the spouses to discuss this change together and to clarify boundaries and how things will be shared, so that the relationship is not crushed under this load.

Grandchildren and children at home

A grandfather or grandmother moving into the home or falling ill is also a change for the children. The elder who used to spoil them now needing help can confuse a child. It is important to give them explanations suited to their age, to give them small and safe tasks (taking their grandfather a glass of water, reading him a book), and to make sure the child is not neglected because of the parents' tiredness. With teenage children, it is important to avoid placing too much responsibility for care on them.

Practical Suggestions for Living Through Role Change More Healthily

Family role changes during illness are often unavoidable; but you have some say over how they are lived.

• Question the thought "I have to do everything". Handing over part of the care does not mean you love your parent any less. Researching options such as relatives, neighbours, home care services or the social support units of local municipalities are ways of sharing the load.
• Talk to your parent about the future. If possible before the illness progresses, having an open conversation about their wishes, preferences and worries will guide you when you need to make difficult decisions later on. For medical and legal matters, it is necessary to consult the relevant professionals.
• Keep pieces of the old relationship. A relationship spent only on giving care is tiring for both of you. Looking through old photos together, listening to a song they love, or asking them to tell you a recipe or a memory from their youth makes them feel they are still the "giving" side.
• Learn to set boundaries. You do not have to respond immediately to every request from your parent. Saying "I'm helping the children with their homework right now; I'll come to you in half an hour" both protects you and makes the relationship sustainable.
• Keep a piece of your own life. Time set aside for you, even just a few hours a week, is one of the most concrete safeguards against burnout.

Things to say and things not to say

• Things to say: "I know this is hard for you too; I'm trying to get used to it as well." / "How would you like me to do this?" / "You used to look after me; now let me look after you a little. There's nothing to be ashamed of in that."
• Things not to say: "You're like a child now; listen to me." / "You were the one who taught me this, and now you can't manage it." / "Everyone's life has stopped because of you."

When Should You Seek Professional Support?

Experiencing tiredness, anger and sadness during the process of role change is to be expected. However, the following signs suggest that support from a mental health professional may be helpful:

• Marked changes lasting weeks in the caregiver's sleep, appetite and energy
• Outbursts of anger towards the parent that are hard to control, or intense guilt that follows them
• Serious problems arising in their own marriage, their relationship with their children or their work
• Conflicts between siblings that have reached the point where they can no longer be discussed
• Marked withdrawal in the parent, refusing to eat, or remarks such as "I don't want to live"

If thoughts of ending their life arise in the caregiver or the patient, do not carry this alone; in an emergency, call 112 (emergency services). If you notice forgetfulness, confusion or sudden changes in behaviour in your parent, it is important to pass these on to their doctor.

How Are Role Change and the Care Burden Addressed in Therapy?

Psychological support does not remove the burden of care, but it can help you not to lose yourself while carrying it. In sessions, the history of your relationship with your parent, the mixed feelings you are experiencing today and your worries about the future can be talked about in a safe setting.

Within cognitive behavioural therapy, rigid beliefs such as "A good child does everything themselves" and "I have no right to be tired" can be noticed and made more flexible. Viewed through schema therapy, it can be understood how patterns learned in childhood, such as "self-sacrifice" or "putting others' needs first", come back to life in the process of caregiving. Difficult conversations with siblings or a spouse can be rehearsed together.

Individual therapy offers a space where the caregiving adult child is seen not only as "the one who cares" but as someone with their own needs and feelings. For those who find it hard to leave home because of caring responsibilities, sessions can also take place online.

Frequently Asked Questions

I get angry with my father while caring for him, and then I feel terrible. Is this normal?

Yes, it is a very common experience. Anger can be an expression of tiredness, helplessness and the loss being lived through. Feeling anger does not make you a bad son or daughter; what matters is how you express it. If your anger becomes frequent and hard to control, getting support may help.

My mother keeps refusing my help; what should I do?

Refusing help is often an effort to protect her independence and dignity. Offering her choices, letting go of control in small tasks and offering help in the language of "let's do it together" can reduce resistance. Where her safety is at serious risk, however, it is necessary to look for a way forward together with her doctor.

My relationship with my parent was never good; do I have to care for them?

This is a personal question with no easy answer. Giving care while ignoring your past wounds can drain you emotionally. Talking with a professional about how much care you can give, what boundaries you will set and how part of the care can be shared can help you protect both yourself and your parent.

Does thinking about moving my parent into a care home mean abandoning them?

No. In some situations, the care a parent needs can go beyond what can be provided at home. Considering such a decision is not a lack of love; it is taking both their safety and your own sustainability into account. Where possible, making the decision by talking it through with your parent, your siblings and their doctor also eases the guilt that may follow. After the move, regular visits and the relationship continuing are important so that the parent does not feel abandoned.

• #role reversal
• #ageing parent
• #caregiver
• #family
• #patient psychology

Yazar

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.

Eğitimler