Caregiver Support

A caregiver helps manage and arrange care for their loved one. The caregiver works closely with the cancer care team by doing things like:

• Giving and keeping track of medicines 
• Managing side effects at home
• Reporting problems
• Keeping family members, friends, and healthcare providers up to date
• Arranging appointments for scans or follow-up visits
• Attending follow-up visits as needed
• Helping with treatment decisions

A good caregiver is an important healthcare resource for the person who needs care. In many cases, the caregiver is the one person who knows everything that’s going on with them. Don’t be afraid to ask questions and take notes during doctor visits. Learn who the members of the cancer care team are and how to contact them. Getting the right support and information can help both you and your loved one with cancer.

Caregivers may need to communicate with the cancer care team on behalf of the person they care for. Your loved one may ask you to help ask questions, share concerns, or keep track of information, especially when they aren’t feeling well. Other times, they may be too sick or unable to communicate and may rely on you to speak for them.

Get consent

Before the cancer care team can share information with you, the person you care for must give permission. The care team may ask them to complete a release form, usually called a HIPAA form. Because different healthcare systems or providers have their own policies and records, you may need a separate form for each one.

Know who is part of the care team

Medical care often involves more than one doctor. There may even be a team of doctors, nurses, and other people taking care of your loved one. Each team member has a different role. Knowing their role can help you decide who to contact when you have questions.

Know when to call care team

Caregivers can help to manage side effects at home. But sometimes, it’s hard to know whether something is “bad enough” to call about after hours or in the middle of the night. Ask the doctor or nurse what problems you need to call about right away, no matter what time it is. You should also ask what things can wait until the next day or the next appointment.

Know who to call after hours or on weekends and holidays. If you don’t have 24-hour access to someone on the care team, find out what to do if there are problems. Have an emergency plan in place just in case problems come up after the doctor’s office is closed.

Someone with cancer may face many new challenges after diagnosis. As the caregiver, you can help your loved one deal with these challenges and get through any problems that may come up.

For example, being in the hospital can be upsetting and frustrating. If the person must go to the hospital, the caregiver can:

• Pack a hospital bag and bring needed items to the hospital.
• Update other members of the care team on what is going on.
• Check on discharge plans.
• Make sure any services needed after discharge, such as home health or physical therapy, have been arranged.
• Make sure follow-up or infusion visits have been set up.
• Arrange transportation to and from follow-up visits.

These tasks may be too much for someone to handle while dealing with being in the hospital. Having this support from a caregiver allows them to focus on getting better instead of problem-solving.

Caregivers may handle some or all of the day-to-day tasks, depending on the needs of the person they’re caring for. Tasks may include:

• Shopping for and preparing meals
• Assisting with feeding
• Giving medicines
• Helping with bathing, grooming, and getting dressed
• Assisting with using the bathroom
• Cleaning the house and doing laundry
• Paying bills
• Helping the person get to and from doctor’s appointments, tests, and treatments
• Handling medical problems at home
• Arranging cancer care
• Deciding when to seek healthcare or see a doctor for new problems

Caregivers may help handle insurance issues on their loved one’s behalf. You may need to get permission to talk with their health insurance company about coverage and reimbursement issues. Find out if there are any documents that need to be signed to give you this permission.

Caregivers can

• Help keep track of medical bills, explanations of benefits (EOBs), and other receipts for healthcare expenses. Also, keep a record of who you talked with at the insurance company, including the date, the name of the person you talked to, and the outcome.
• Ask if there is a case manager for the insurance. Case managers may be available for people with complex or chronic conditions as extra support to help manage their conditions.
• Talk with the healthcare team to see if there are ways to lower expenses.
• Look for programs to help with costs.

It may be hard to talk about, but legal issues can be a huge source of stress for someone with cancer, their caregiver, and family. Common worries include who will manage the person’s money and make important health care decisions if they are unable to do so. Sometimes, the caregiver will handle these tasks, or it may be other members of the family.

It’s important to bring up these questions with someone while they are still able to make choices. This way, everyone can be clear about what they want.

The primary caregiver often knows the most about what is going on with the person they care for, but often there are others who need to be in the loop, too. Caregivers may arrange family meetings to keep everyone informed.  These meetings allow everyone providing support to get on the same page and express their feelings or concerns.

When planning a family meeting, it’s important to include everyone who will be providing support, from both near and far. This could include family members, friends, neighbors, paid caregivers, or anyone else the person with cancer wants to include. Make sure that the person you care for is included, too, if they’re willing.

Busy schedules can make it hard to get everyone together in person, but other options may include video calls, virtual/online apps, or calls on speakerphone. Some topics that may be covered are:

• Updates about cancer, treatment, and what may happen next.
• The person’s needs, wishes, feelings, and concerns.
• Who can help and what they can do, such as meals, rides, childcare, or household chores.
• Money concerns, time off work, and other financial help that may be available.
• How much time family and friends can spend helping or visiting.
• Who can share updates more broadly with other family and friends so the main caregiver doesn’t have to.

If there are family issues, such as how members relate to each other, how they feel about the person with cancer, or how they cope with illness, these issues can make it hard to provide care and support. It’s good to work with other family members on any issues that could get in the way of helping to care for a loved one. A social worker or other professional can help with these issues.

During a family meeting, try to get everyone to focus on the issues at hand. It might even help to write a list of issues or questions and have everyone look at it and add their own. This way, there’s a specific agenda for the family meeting.

Supporting your loved one through their cancer journey is one of the most important things you can do. Talk with them and let them know you are there for them.

Keep communication open

It’s good to set a goal of sharing and being open right from the start. Remind each other that you’re on the same team. Share your fears and worries. Be honest. Open communication will help keep your relationship strong and reduce distress and anxiety.

Try something like:

• “I’ll do whatever I can to help you through this. I might not know what to do sometimes, but I’ll find out and do my best.”
• “I want to be here for you to help you get through this. You’re not alone.”
• “We can do this together. Let’s try to be open with each other and work with each other no matter what happens.”

Help them stay involved

At times, it may be hard for someone with cancer to take part in daily planning and decision-making because they’re dealing with the physical, emotional, and social effects of cancer and treatment. You can involve them as much as possible so they can maintain a sense of control and purpose.

Help them live as normal a life as possible. To do this, you might start by helping them decide what activities are most important. They may need to put aside those that are less important in order to do the things they enjoy the most.

Let them decide when they want help

Let your loved one know you’re available to help, but don’t take over. For example, if they’re struggling to get dressed, give them time to do it themselves. Let them decide when they need help.

Pay attention to changes in mood

You might find that the person you’re caring for is acting differently. They might seem angry, quiet and withdrawn, or just sad. If you think they aren’t talking to you because they don’t want to hurt your feelings, make sure they know that you are always open to listening, even about tough topics. If they keep acting very sad or withdrawn, you might want to talk to the cancer care team about what could be causing these changes and what can be done.

There are legal documents that can allow someone with cancer to designate a person to carry out their treatment decisions and wishes if they can’t. Healthcare decisions can be made ahead of time in writing and expressed through these documents. Filling out these documents helps the caregiver to know exactly what their loved one would want.

If you have to make decisions on behalf of the person you’re caring for, think about what’s most important to them and try to honor their wishes. Knowing their wishes, habits, and values will help with making everyday choices.

This can be frustrating for the caregiver. You may feel that your loved one is able to do some things for themselves, but they don’t. Sometimes, there are medical or emotional causes for this, such as fatigue or depression. Talk with the cancer care team to help you figure out what may be going on.

It’s not always needed and may seem hard to do, but sometimes you might have to set limits. For example:

• Find out what self-care tasks the person can safely do, such as bathing, dressing, or going to the bathroom. If you don’t know, ask the care team for a referral to physical therapy or occupational therapy for an evaluation. Social workers may also be able to help if assistive devices are needed.
• Encourage them to do as much for themselves as they can.
• Encourage them to talk about things they enjoy so the conversation isn’t always about cancer and illness.
• Let them make as many personal choices as they can. If they’re overwhelmed with decisions, give them simpler choices like, “Would you prefer chicken or fish for dinner?” or “Would you rather wear your blue pants or the brown ones?”
• Get others involved if the person is avoiding treatments or doing things that can cause harm. Family members or friends can be a strong source of influence.

Sometimes, professional help is needed. Lean on the resources and services of the cancer care team when you need them. They can help you find the support you need, such as mental health counselors, home care services, or financial assistance, so that both you and your loved one have the help you need.

In families where there is already tension, any crisis or stressful change can worsen abusive behaviors. The crisis of a cancer diagnosis can take a toll on both the caregiver and their loved one.

People who are sick are more commonly seen as victims of abuse, but sometimes they may be the abuser. If a person’s behavior becomes abusive after a cancer diagnosis or treatment, the doctor can check whether there are medical reasons for it. Just because someone is sick does not make abuse okay.

Talk to someone on the care team if you need help or if abuse is happening or has happened in the past.

Cancer and its treatment can cause confusion, forgetfulness, and unsteadiness walking, and may worsen the symptoms of other conditions, such as dementia. People can harm themselves by:

• Forgetting to take medicines
• Not eating
• Unsafe driving
• Losing track of time while cooking
• Not caring for themselves

People can be a danger to themselves and others if they start to hit, bite, or throw things at caregivers or family members. In such cases, the cancer care team needs to know about these behaviors. The person may need to be hospitalized if further workup or treatment is needed.

Be open and honest with your loved one and other family members. Together, you may be able to come up with the best plan for your loved one.

Sometimes, having someone stay with the person at all times can solve the problem. But this can take creative scheduling from family members or hired help to make this happen.

Other times, the loved one may need to move to a:

• Caregiver or family member’s home
• Nursing home
• Assisted living facility
• Independent living facility

If your loved one moves into a care facility, you will still be their caregiver. The role may be different, but you’ll always be the first one called for any problems or concerns. You will still talk with the staff, visit your loved one, and stay in touch with their doctors.

Needing to move out of the home can be emotional for your loved one. They may feel like they’re losing a sense of control or won’t be as independent as they were before. If they need to move out of town, it may be hard to leave their community, daily routines, friends, or care team.

In some cases, you have to be firm, especially if the present situation is unhealthy or unsafe. If you feel you need to act against the wishes of the person with cancer, be direct and explain what needs to be done. Sometimes, if your loved one hears this from someone other than their caregiver, it may be better received.

In other cases, there’s room to work something out. Be sure that you, your loved one, and family have looked at all options.

Talk with a social worker about the options available. They can guide you during this difficult time if your loved one needs to leave home.