Through the course of your loved one’s illness and after your loved one’s death, you can expect your family to change, especially if you’re caring for your loved one at home. Changes may be big or small, and they may be positive or not. Some things may not change at all.
When you’re thinking about how your family is adjusting, keep this in mind – family members are responding to two related challenges – to your loved one’s illness and dying, and to the impact that caregiving has on the household. It can help to know what you may expect.
Here are some ways that your family may respond to your loved one’s illness:
Each family member will react in their own way. Like your loved one, members may have many feelings, sometimes all at once – shock, denial, anger, sadness, fear, frustration, resentment, or even relief. They may ask, “Why us?” They may hope for a cure even after aggressive treatment has stopped. They may wonder how they’ll ever survive without your loved one.
Some family members may have more complicated reactions that involve severe anxiety or depression. Some may withdraw if they feel afraid or depressed, or if they think they have nothing to offer your loved one. Some may seem not to react at all.
Each family member will cope with their emotions in their own way and at their own pace. Some may want to talk about your loved one’s illness and their feelings when others aren’t ready. Some may not want to talk at all.
Young children may become angry, clingy, or withdrawn. They may have trouble working at school, playing, or sleeping. They may think that they caused your loved one’s illness, and they may fear that other family members will also become sick and die. At different ages, children will have different concepts about the permanence of death.
Teenage children may feel torn between their need to become independent and their need to be with your loved one. They may rebel or seek comfort, or both.
The patient and the patient’s spouse (or partner, or significant other) may have difficulty expressing love and support in the couple’s usual ways. Problems that existed in the relationship before the illness may become worse, or the couple may look past them now.
Here are some ways that your family may respond to caring for your loved one:
Whether your loved one is at home, in hospital, or in hospice, your family’s routines, roles, responsibilities, and relationships will probably change. Family members have to deal with new expectations and learn to interact with each other in new ways.
Family members may take on new tasks as part of doing things that your loved one can’t do anymore, or as part of caring for your loved one. A member who works outside the home may have to take on more household duties. Another member may have to take a job outside the home to help support the family.
Children and teenagers may have to cope with tasks and situations they’re not prepared for. Older children may have to take care of younger siblings. Adult children may be challenged to care for a parent and their children at once.
If some family members have too many new responsibilities or don’t feel confident about their abilities, they may feel resentful, or overwhelmed. Members who don’t get enough self-care and support risk burnout.
Depending on your situation, these family activities may become especially challenging:
setting priorities and goals;
making short-term or long-term plans;
assigning caregiving tasks;
dividing household chores;
coordinating daily activities;
allowing for privacy;
relating to people outside the family.
Issues that affect the family unit may develop or get worse, such as:
physical or mental health problems;
substance abuse problems;
When it comes to deciding about a loved one’s care and treatment, for some families it’s clear who will make the decisions and what those decisions will be. For other families, there may be many options, conflicting opinions, and little experience in making decisions as a family unit. Family members may disagree about who will give care, how, and where, and who will pay.
Geographical distance can complicate things. Distant family members may feel guilty and frustrated if they can’t be near their loved one. The members giving care on a daily basis may feel that others aren’t contributing enough.
As you can see, families face many challenges when a loved one is ill and dying, and each family will cope in its own way. Many families become stronger and closer as they work together to care for their loved one. But some families may not. Geographical or emotional distance may limit contact between family members and their loved one, and care may be given more by professionals than by family.