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What should I do if a loved one has blood cancer?

When a loved one is diagnosed with blood cancer, family members, friends, and caregivers often find themselves confronted with a multitude of emotions and challenges. In this difficult situation, you must know that resources and support are available to help you.

The Leukemia & Lymphoma Society of Canada (LLSC) offers a range of services and practical information specially designed for the caregivers of people with blood cancer.

How can I support my loved one?

If you're caring for a child:

• Talking to your child about their diagnosis. Open, honest, age-appropriate communication is essential to building your child's confidence and encouraging them to express their fears and concerns.
• Help your child cope with their diagnosis. It's important to provide positive structure and encouragement, respecting their emotions and giving them appropriate ways of expressing them. Entertaining activities and maintaining contact with friends can be helpful during difficult times.
• Siblings can also be affected. They may feel a range of emotions and need support. You can help them by letting them express themselves, answering their questions and reassuring them about their health. 
• Returning to school can be a difficult stage for children after cancer treatment. It's important to talk to the school team to ensure your child gets the support they need. Explain the situation to your child's teachers and prepare your child for the potential challenges of returning to school.
• Follow-up care after treatment is essential to your child's long-term health. Be sure to attend all follow-up appointments and keep detailed medical records. Help your child sustain a healthy lifestyle and remain open to managing your own emotions throughout this challenging journey.

To learn more, read the LLSC’s fact sheet on what to do if your child has cancer.

If you're caring for a young adult:

It's important to respect the autonomy and treatment decisions of a young adult (age 18 to 39). Young adults facing cancer face unique challenges, both during and after treatment.

If you are a parent caring for a child and they reach the age of majority (age 18 in Ontario) during cancer treatment, this can also change the dynamics of your relationship. It's crucial to maintain open and ongoing communication to best support your loved one through this challenging and evolving period.

If you're caring for your partner:

You may find that the diagnosis changes the dynamic of your relationship. Your sick partner may be forced to stop working or stop taking part in day-to-day tasks. Managing family responsibilities can also become more complex, especially with young children.

Moreover, treatment can affect intimacy and sexuality and can increase the risk of infertility, which can present an additional challenge to your relationship.

To learn more, you can read the fact sheet on fertility and cancer.

If you're caring for a parent:

Reversing roles can be disconcerting, especially if your parent has always been the caregiver in your family. Your parent may resist accepting your help and feel embarrassed about being dependent. They may also face the challenges of aging and loss of autonomy, which can be equally challenging for you.

To learn more, you can read the fact sheet on relationship changes

How can I support my loved one daily?

Supporting them without doing everything 

There are strategies for providing adequate support to your loved one while preserving their well-being:

• Respect their right to make their own decisions and offer choices whenever possible: Encourage them to make their own choices to maintain their sense of independence and self-esteem unless they cannot do so or their behaviour poses a risk to themselves or others. It's also crucial not to impose tasks on yourself that your loved one can still accomplish.
• Intervene only when necessary: Encourage them to participate in activities they can still manage, such as managing their finances or preparing meals, to preserve their autonomy.
• Keep your promises: It's essential to keep them and show consistency to support them best. Ensure you keep your commitments and are reliable for your loved one. Even if they don't always tell you, they rely on your support and presence during this difficult period.

To learn more, you can read the fact sheet on what it means to be a caregiver and use this list of questions to ask your loved one.

Having open and honest communication

By maintaining an open and honest relationship, you'll be able to define each other's expectations and limits from the start:

• Offer your support by listening attentively and actively.
• Be the intermediary between your loved one and their friends or family, asking them whom they wish to communicate their diagnosis with and what they wish to share or keep private.
• Respect their privacy and avoid sharing information on social media without consent.
• In addition, be aware of any cognitive problems they may be experiencing, such as memory loss or confusion, and suggest strategies to help them manage these difficulties daily.
• Finally, maintain an open dialogue withyour loved one'shealthcare team, as their support and advice can be vital in managing the treatment.

To learn more, you can read the fact sheet on communicating as a caregiver.

Helping them manage the side effects of treatment

• Weakness or mobility problems: It may be necessary to change the home environment to ensure safety and comfort. For example, you could install handrails or grab bars in the bathroom to help your loved one move around more easily.
• Weakened immune system: It’s essential to maintain a clean, hygienic environment to reduce the risk of infection, using non-toxic cleaning products such as vinegar and baking soda to avoid irritating fumes and allergic reactions.
• Prevent infections: Maintain their health by encouraging good personal hygiene, and take precautions where needed to avoid picking up infectious diseases in public settings.

To learn more, you can read the fact sheet on caregiving during treatment and the fact sheet on managing side effects.

How can I keep taking care of myself?

It's easy to lose yourself in the role of caregiver to the point of neglecting your own needs. Yet it's crucial to understand that you must be in good physical and emotional health to provide the best possible care.

• Take care of your physical health: hydrate regularly, sleep well, eat well, exercise for 30 minutes, and continue to listen to your own medical needs.
• Take care of your mental and emotional health: Take time for yourself daily and continue to do the activities you enjoy.
• Accept help from friends and family to prepare for regular breaks and better manage moments of anxiety.

To learn more, read the Caregiver's Mental Health fact sheet and the Caring for Yourself fact sheet and use this self-care plan. 

You can also watch this video on the reality of caregiver burnout and how we can work to prevent it from happening. 

How can I get support?

If you start to experience sadness, depression or anxiety that interferes with your daily activities, it's important to seek individual counselling from a healthcare professional.

For help finding a counsellor and more, get individual, personalized support in 170 languages by contacting Leslie-Ann, LLSC Ontario Community Services Manager:

• E-mail: [email protected]
• Telephone: 647-253-5546
• Toll-free: 1 833-222 4884, ext. 5546

You can also participate, as a volunteer, in the free Caregiver Support Program, which connects caregivers with a volunteer who has had similar experiences caring for someone with blood cancer and who has been trained to listen and offer a high level of understanding by sharing their experience.

Presented by: The Leukemia & Lymphoma Society of Canada