Caregivers

Caring for someone with acute myeloid leukemia

A caregiver is someone who provides unpaid support and care for a family member or friend who cannot manage without their help. A caregiver can be a parent, husband or wife, brother or sister, partner, or a child. In some instances, a caregiver could be a colleague, a neighbor, or a close friend. Every caring situation is different.

Caregivers play a central role in a patient’s journey. Caring can mean a variety of things and in some cases, this could be providing round-the-clock care. Caregivers can help with a patient’s daily needs and activities, including giving medications, listening to the patient’s concerns, driving them to appointments for treatment, and helping with personal care.

Caregivers can also provide comfort, encouragement, and reassurance to the person they care for. In some cases, a caregiver can be responsible for managing the health and wellbeing of the person they care for. Caregivers can also help the person they care for achieve the best possible quality of life.

Caring approaches

Almost every caregiver makes choices that work best for their own situation. There is no universal approach to caring. You simply try to recognize how you can do your best. The following suggestions can help you to help the person you care for.

Communicate with the person you care for

It is important to communicate clearly with the person you care for and let them know that you want to be there for them. Acknowledge that they have the right to make decisions about their life (unless they lack mental capacity) and deserve respect for their feelings and independence. Involve the person you care for in decision-making as much as possible, always giving them the opportunity to make choices. In cases where they want to speak about their feelings, try to encourage them and listen. You may also want to share your feelings in the most sensitive way possible.

Help with the things that the person you care for cannot do

It is important to give the person you care for as much independence as possible, as this will contribute to their sense of well-being. Understand that it might be emotionally difficult for the person you care for to depend on you and they may feel that they are being a burden. Try to help them in a way that doesn’t seem like you are interfering, even if they do not ask for help.

Work closely with the medical staff

As a caregiver, you may be a central part of coordinating the patient’s care. You may be responsible for booking appointments and providing transport to and from the hospital. You may also be allowed to visit the healthcare professional with the person you care for, giving you an opportunity to learn more about acute myeloid leukemia, such as the patient’s type of acute myeloid leukemia, the specific treatment options, and the support available for the patient. It is also an opportunity to tell the healthcare professional about the progress of treatment, any side effects from treatment, and any issues you are aware of as the patient’s caregiver. It is useful to ask questions during healthcare professional visits, as in most cases caregivers are the people who know everything that happens to the person that they care for.

How does caring affect your life?

In a lot of cases, the time and energy you spend caring can be overlooked by society and the people around you. As a result, you may go through a series of emotions and feelings. Sometimes, you can drain yourself by trying to handle too many responsibilities on top of daily routines and working commitments, which could lead to exhaustion and affect your social life.

Also, caring for someone can lead to extra costs, including hospital bills, transport, and other daily requirements. Trying to keep a full-time job while caring for someone can be difficult, and can lead to you reducing your hours at work or even having to quit your job. All of these could lead to a financial burden.

It is important for you to find time to look after yourself and do things that make you happy. Visit the global network section to find your local support group; they can guide you, provide support when you are overwhelmed with the responsibilities of caring, and provide financial advice.

You can also find our member resources on nutritional support, wellbeing and psychological support, movement/exercise, management of side effects, complementary therapies, and financial and employment assistance via our interactive graphic page.

If you’d like to learn more from a caregiver’s experience, follow the stories from caregiver Doris Hill on her experience of caring for her husband with acute myeloid leukemia.