The Role of a Caregiver

Like so many other diseases, cancer does not just impact the patient. In many scenarios, there are partners, siblings, children and/or friends who take on the role of caregiver.

If you have a loved one who has been recently diagnosed with acute myeloid leukemia (AML) or secondary AML (sAML), it can be hard to know the best way to offer your support. Here are some insights that may be helpful as you navigate the caregiver journey.

The Caregiver Role

Depending on the specifics of your loved one’s diagnosis, taking an active role could mean different things. Here are a few ways to lend your support:2

  • Be supportive, but remember it is the patient who is in charge.
  • Allow your loved one to do most of the talking with their medical team, if that is their preference.
  • When talking to a doctor, try to not do so in a way that makes your loved one feel left out of the conversation.
  • Help your loved one keep a notebook or folder with information about test results, treatment options, insurance issues, doctor’s phone numbers and community resources.
  • Help your loved one create a list of questions they want to ask their doctors. Having these questions written down means you won’t forget to ask them while you are there.
The Long-Distance Caregiver

You do not have to live nearby to play an active role, either. Before jumping into a long-distance caregiver role, be sure to listen carefully to your loved ones’ thoughts and opinions, asking questions along the way. The support you’ll provide is most helpful when discussed with your loved one and others involved in their care.3

Some examples of ways you can support a loved one with cancer from afar include:3

  • Research and gather information about cancer treatment and post-treatment through internet research and/or phone calls.
  • Keep track of appointments, health insurance paperwork and medical bills.
  • Arrange for a neighbor or friend to help with travel to appointments, household chores or meals.
  • Keep family and friends updated.

What you and your loved one find supportive will be unique. Just remember that you are not alone, and that you can help. Knowledge and confidence will grow over time.3

Take Care of Yourself

As a caregiver, it’s hard to take care of yourself and everyone else. It is crucial to not neglect your own physical and emotional health. If you are caring for someone with AML, be mindful of your own wellbeing. From a 2019 survey of caregivers, self-rated health seems to have declined during the previous five years, with 4 in 10 (41%) caregivers considering their health to be excellent or very good, down significantly from 2015 (48%).1 In order to help your loved one, try to also proactively take care of yourself. Consider eating well, taking time to exercise or meditate, and establishing an open dialogue about boundaries and expectations.

There are resources to help. MyLifeLine, a unique online support community for cancer patients and caregivers offered by Cancer Support Community, allows you to connect with your family and friends for social, emotional and practical support. This tool can be used by caregivers to create their own private online community to help find hope, regain control and document their journeys. You may also connect with peers on the MyLifeLine AML discussion board.4

There may also be opportunities to connect online with hematology professionals to ask questions. The MDS Foundation offers a series of webinars throughout 2020 to patients, survivors and caregivers experiencing sAML caused by a prior myelodysplastic syndromes (MDS) diagnosis.5

Ask the Important Questions

Information is key to caregivers. As you step into this role, make sure you know the answers to a few important questions:2

For the Doctor –

  • How much experience do you have in treating this specific type of cancer? Is your team up to date on the latest treatments for this type of cancer?
  • Do you and the hospital where treatment will be provided accept our insurance?
  • Do you have an oncology nurse and/or social worker on staff to provide us with education and support?
  • How and when can we contact you or other members of the cancer team with ongoing questions?

About Treatment Options –

  • What is the goal of treatment?
  • What are the benefits of each treatment? Why are you recommending one treatment over another?
  • What are the risks? How can we prepare for possible side effects?
  • Are clinical trials an option?
  • Does the facility where treatment will be given also offer resources for emotional support?

Looking for more? Check out these helpful resources, too:

Disclaimer: The third-party resources cited above are for the reader’s information only. Jazz Pharmaceuticals does not own and is not responsible for the content included in these resources.

Based on a 2019 online caregiver survey, more than 1 in 5 Americans (21.3%) are caregivers. This totals an estimated 53 million adults in the U.S., up from the estimated 43.5 million in 2015.1