People with acute myeloid leukemia (AML) typically receive chemotherapy and sometimes targeted treatments. During and after AML treatment, people with this cancer might need to rely on caregivers for physical, emotional, and practical support.
While caregiving can create a feeling of personal enrichment and bring you closer to your loved one with cancer, it can also be overwhelming at times. But you don’t have to do it alone.
Learning more about what it means to be a caregiver and where you can go for help can make the process easier for everyone.
People often experience a mix of emotions after a cancer diagnosis. Your loved one may feel overwhelmed and angry, while also carrying fears and worries about their health.
They may also experience stress and anxiety about the practical details of managing life. Many people are also hopeful about treatment and look forward to moving past their cancer experience.
As a caregiver, you can help your loved one manage their feelings and support their mental health. Encourage them to talk about what they are going through, but respect their decision if they don’t feel like sharing.
You can also help them stay physically active by joining them on walks or other daily activities, like gardening.
Your loved one’s doctor can refer you to a mental health professional, if necessary. They may also recommend a list of support groups for people with cancer if your loved one needs additional support.
The Leukemia and Lymphoma Society (LLS) recommends caregivers only do what the person with cancer cannot. This helps them maintain a sense of independence, which can make it easier for people to accept help when it’s most needed.
Nonetheless, there are many ways you can support your loved one with AML through daily tasks.
Consider helping with some necessary errands, like:
- grocery shopping
- household cleaning
Depending on your relationship, you may also support your loved one by:
- helping with personal hygiene and dressing
- providing assistance with using the bathroom
- keeping track of finances and paying bills
You may want to help your loved one with AML prepare meals. Because of AML treatment, your loved one might find it hard to enjoy foods they once did. They may experience nausea, sore mouth, and loss of appetite, among other symptoms.
Participating in mealtimes as one did before the AML diagnosis can often provide a feeling of support, even if eating is different.
People with AML might also experience neutropenia, which is a lack of infection-fighting white blood cells. You can help them prepare meals in a way that reduces the chances of infection, such as following
You may have heard of the “neutropenic diet.” However, recent studies indicate this diet cannot effectively reduce the risk of infection in people with cancer who have developed neutropenia.
People with AML have to balance many things, including medical appointments, treatment regimens, finances, and family responsibilities. Caregivers can provide invaluable assistance by staying up to date and organized.
In the early days after diagnosis, this might include taking some time to put together a plan with your loved one. The LLS has resources and worksheets to help caregivers manage issues such as:
- creating an emergency room plan
- understanding health insurance plans
- putting together a contact list for the healthcare team
There are also a number of ways you can help with ongoing tasks, like:
- keeping a calendar for medical appointments
- tracking questions for the healthcare team
- logging daily medications
- recording symptoms, such as pain levels
- itemizing daily food intake
- documenting calls to the insurance company
- budgeting and investigating financial assistance options
People with AML have a lot to think about during treatment. Caregivers play a major role in relieving some of this burden.
Often, the circle of care is extended to other family members, friends, and people in the community. They may help with practical tasks like:
- daily household chores and meal preparation
- grocery shopping
- driving loved ones to appointments
- caring for children and other family members
As a caregiver, you can decide how to handle these relationships. You may want to let go of the expectations that certain people will participate in the caregiving. And you may want to discuss your own needs directly with your loved one living with AML.
Caregivers are often an important liaison between the healthcare team and the person with cancer.
For some, this process can start with a discussion with the healthcare team on what your loved one is comfortable and uncomfortable with. The LLS has a worksheet you can use with your loved one to help establish these important boundaries.
By attending appointments with your loved one, you can stay up to date with the treatment plan.
You can take on the role of a notetaker, writing down important details of conversations with the healthcare team. At home, you can be the one who helps remind the person with AML to take medications, eat well, and rest.
The healthcare team can also be an important resource for you if you have concerns about your loved one’s well-being. You may be the first one to notice changes in behavior, moods, and other signs that might help reveal how your loved one is coping.
The process of looking after a loved one living with cancer can be overwhelming at times. Often, caregivers prioritize the needs of their loved one and put their own needs aside.
This approach can be hard to sustain in the long run. It can have a negative impact on your physical and mental health.
It’s very important that you take care of yourself first before taking care of others, and it’s perfectly fine to take a break.
Some things you can do to support your own wellness include:
- taking time to relax every day, such as by doing yoga or engaging in a hobby
- planning to visit your friends for mealtimes, get-togethers, etc.
- looking into respite care services (when other caregivers temporarily take over your caregiving duties)
- asking for help from friends or family
By taking time to look after yourself, you might feel better able to handle the emotional challenges of caring for someone with AML.
Honor your feelings; it’s OK to feel frustrated or tired. Talking with a counselor or mental health professional may also help you manage the caregiving role.
Caregivers play varied roles in the lives of people with acute myeloid leukemia (AML). Your loved one may rely on you to help with daily errands and to manage medical care.
There’s a lot to think about, but caregivers can call upon family members and friends for support when needed.
It’s important for caregivers to take time for themselves so they can manage their own feelings and stress during this time. Your loved one’s healthcare team can help connect you with mental health professionals, support groups, and other services to make things easier.