AML World Awareness Day 21 April 2019

Caring

If you care for someone with AML

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

Carers 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. Carers 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.

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

Caring approaches

Almost every carer has to make choices that work best for their own situation. There is no universal approach to caring. You simply have to 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 and always give them opportunities 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 carer, you may be a central part of co-ordinating 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 doctor with the person you care for and that can give you an opportunity to learn more about AML disease, the patient’s type of AML, the specific treatment options and also the support available for the patient. It is also an opportunity to tell the doctor about any side effects from treatment and the progress of the treatment or any issues you are aware of as the patient’s carer. It is useful to ask questions during doctors’ visits, as in most cases carers 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 this 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 support groups section to find your local support group who can guide you and provide support when you are overwhelmed with the responsibilities of caring, and also provide financial advice.

You're not alone

There are several resources that are available for you. These can provide further in-depth information about acute myeloid leukemia (AML) and also offer you support.

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