Just as every patient’s situation is different, every caregiver may be called upon to perform different tasks. Caregivers may be asked for simple support — like rides to doctor appointments, meal preparation and housekeeping. Or they may be a full partner in treatment, attending every appointment, asking questions on the patient’s behalf, acting as a proxy for the patient when needed, and much more.
One of the most important things you can do as a caregiver is take care of yourself, too. It can be difficult to focus on yourself when someone you love is undergoing treatment, but Seattle Cancer Care Alliance (SCCA) provides resources for you so you can be effective in your role as a caregiver.
Support and resources
- Patient and Family Resource Center: Located on the third floor of the SCCA South Lake Union clinic, the resource center provides free services and information for patients, families and caregivers.
- Helping Children Cope When Someone They Love Has Cancer (PDF)
For some patients, asking for help can be a very difficult task. And some caregivers want to help, but aren’t sure what they can do. Here is a list of topics to help start your conversation about your new role.
- Arranging transportation
- Helping with financial tasks
- Tracking appointments
Giving emotional support
- Being physically present
- Giving encouragement
- Helping the patient find ways to cope
Providing physical care
- Identifying changes in the patient’s condition
- Obtaining medical care if needed
- Reporting symptoms to healthcare staff
- Helping patients swallow pills and medication
- Recording medications taken/administered
- Acquiring and maintaining medical supplies
- Performing additional tasks, such as central line care
Maintaining the home environment
- Grocery shopping
- Sharing important information about the patient with medical staff
- Helping with decision-making
Providing assistance/support to others
- Serving as a communication link with other family members or friends
- Explaining information to children
- Providing child care
Whether you are a patient or a family member, support is available for coping with grief and loss; role changes; family dynamics; the challenges of living with a serious, chronic illness; and related emotional issues.
Social workers are available to all SCCA patients and families. Our social workers can help with acute distress related to changes in a person’s medical condition, death and dying, or other stressful life events. Social workers also are available for follow-up grief counseling for families who have lost a loved one, and for end-of-life and funeral planning.
Chaplains provide respectful, spiritual, and emotional care to people of all faiths and spiritualities, including those who identify themselves as nonreligious or nonspiritual. SCCA chaplains will talk with you in a supportive and inquiring manner, will not impose a perspective on you, and are always available for urgent needs.
For more information, or to speak with a chaplain, call (206) 606-1099 or email firstname.lastname@example.org.
Journey Program at Seattle Children's
The Journey Program is for any family who has experienced the death of a child. It provides support to help families cope with death, loss, and the grieving process.
The program offers:
- Support groups for adults, facilitated by trained and caring staff
- Individual and family counseling
- Meetings with family members to provide help and support with family issues
- Follow-up phone contact with the family
- Suggestions for reading materials and referrals to community resources
- Grief support to schools and communities
- Bereavement education and training for the community
Helping children understand a loved one's cancer
Supporting children through a family member’s diagnosis and treatment is a complex and sensitive undertaking. Like all of us, children need emotional support. They need to have their routine maintained as much as possible, and they need to understand your family’s guidelines about privacy–what's OK to share and what isn’t. The process of resolving these needs depends on how old your kids are and what kind of diagnosis and treatment you’re dealing with.
How you talk about cancer will vary based on your knowledge of your child and your family’s culture, faith, and beliefs about cancer. This is your family, so you know best.
Where to start?
Prepare yourself for questions. Learn what you can about the diagnosis, including side effects and treatment schedule. Children of different ages have different kinds of questions, though some topics are common with all children who are facing a cancer diagnosis for someone they love. .
Teaching children early. The earlier they know about the diagnosis, the more included they feel, and the more able they are to understand the changes they see. Children can usually sense when something is wrong and often imagine the worst if they do not know what is happening.
Begin with what the child sees and knows: “You know how your aunt has been tired and sleeping a lot?” Use the actual name of the disease, including the word “cancer,” so the child becomes familiar with it. This will help them feel prepared for the terminology they will hear from others. Explain that every situation is different, and that cancer doesn’t affect everyone in the same way.
Choose a time to talk. Speak with children when you feel you can calmly discuss the illness and support your child with his/her emotional reaction. Your child may be upset by the information or he/she may have very little reaction. Children often need to absorb information over time.
Use language your child can understand. It’s different for every age group. Explain as clearly as you can where in the body the disease is, how the disease will be treated, and how this will affect their life, including changes in the family.
Invite a professional or a close family member. If needed, they may help you discuss the illness with your child. You or another loved one should be with the child for support and security if another person provides the information.
Be truthful about things you cannot answer. It’s not always possible to promise that everything will work out well. Assure your child that he or she will be taken care of no matter what, and use this opportunity to tell your child about how you manage with the unknown.
Links for caregivers
- Dear Caregiver: Some reassuring words from a caregiver who has been where you are now.
- For BMT caregivers: If you're caring for a BMT patient, here's some information about your role.
- Online resources for caregivers: We’ve created a list of websites and tools that caregivers may find helpful.
- Take care of yourself: You’ll be a much more effective caregiver if you also look after yourself. If you’re not sure how you’re feeling, we have a short quiz that might help.
- Guide for Family Caregivers in Cancer from the National Cancer Institute