Ask the Nurse: Parenting and grandparenting with myeloma

Myeloma diagnosis is likely to be a shock for you and your family, and if you have children or grandchildren, you may feel anxious about the impact your diagnosis may have on them.

This month we answer some of the common concerns we are asked on the Myeloma Infoline about how to talk to children about myeloma, cope with potential changes in routines, and find additional support.

Should I talk to my child(ren) about myeloma?

Discussing myeloma with your children may feel daunting, but addressing their awareness and concerns is important. Even very young children can sense when something is wrong.

Providing age-specific, realistic, and accurate information about your diagnosis and treatment can help alleviate their fears. It can also prepare them for potential physical changes such as hair loss, fatigue, or weight loss.

By engaging in open conversations with your child(ren) about your diagnosis, you can create a safe space for them to express their worries and ask questions.

How do I tell my child(ren) about my myeloma diagnosis?

You know your child(ren) best as their parent or guardian. There is no one-size-fits-all approach to discussing your diagnosis with them.

If you are newly diagnosed, you might want to take some time to process the news before discussing it with your child(ren). When you feel ready, involving other adult family members, a close friend, or a family counsellor who can support you during the conversation can be helpful.

If you have more than one child, consider whether you want to talk to them together or separately, considering their ages and individual needs.

To help explain what myeloma is, we have patient resources available, such as the illustrated book ‘Kelsey and the Yellow Kite’ for younger children and Easy-to-Read Guides.

How might my child(ren) react?

Like adults, children can react very differently when a loved one is diagnosed with myeloma.

Some children can be very direct with their questions, which you might find difficult to handle. Preparing beforehand for questions about your future with myeloma or the possibility of death can help you respond in a reassuring yet honest manner.

Some children may need time to process the diagnosis. It is important to let them know they can revisit the topic, talk, and ask questions whenever they feel ready.

Additionally, organisations like Barnardo’s and Hope Support Services provide emotional support for children and teenagers with a parent living with cancer.

How can I cope with changes in my parental or grandparental role?

When a parent or grandparent with regular caregiving responsibilities is diagnosed with myeloma, there can be significant changes in parental roles.

Due to the demands of treatment, you may become less physically and emotionally available. This may result in children taking on more responsibilities within the family. It is essential to recognise and address these shifting roles to look after the wellbeing of everyone involved.

Open communication with your children, carers, family, and friends can be key in navigating these challenges.

Some simple tips that may help with communication include:

  • Make time to talk about how you feel and what is important to you. Allow time and space for your children and family members to do the same
  • If talking is difficult, you can write your thoughts down for the other person to read
  • You do not need to have an answer for every worry or question – listening to one another can be enough
  • You can find a local support group near you to talk to other people in a similar situation
  • Consider accessing Myeloma UK’s Peer Buddy service, where you’ll be paired with someone who has firsthand experience with myeloma. They can provide support, understanding, and a listening ear in a one-to-one setting

How can I manage disruptions in my family’s daily routines?

Myeloma treatment and symptoms can disrupt family life and normal routines. It’s important to acknowledge that childcare needs may change as you navigate medical appointments and manage your health.

Don’t hesitate to seek additional support to help care for your children during this time. Friends and family often take cues from you when it comes to emotional and practical support. If they aren’t offering the help you need, it probably isn’t because they don’t want to or because you burden them but because they don’t know how to.

Making the first move to start these conversations may feel tiring, but it will let them know when and how you need support.

Remember, asking for help can be a necessary step in ensuring your children’s wellbeing and your own.

Where can I get practical support?

To find practical support, consider the following options:

Support from friends and family

Reach out to other family members and friends who can assist with daily tasks like housework, cooking, childcare, or school runs. Even small gestures of support can significantly lighten your load.

School support

Inform teachers or caregivers about your myeloma diagnosis so they can provide the necessary support for your child(ren) at school or nursery. They may have resources such as school nurses or child psychologists who can provide additional emotional support for your child.

Explore whether extended hours or after-school clubs are available, as they can provide extra care and engagement for your child.

Social services

Social services provide a variety of care options for children, families, and carers. They can conduct assessments and care packages tailored to your family’s needs.

You can also contact your local council’s Family Information Service to obtain a list of childcare services available in your area, including childminders, daycare nurseries, and out-of-school care options.

You can read more about parenting with myeloma in our Infopack for living well with myeloma or watch our video about Issues for younger myeloma patients from 4:54 to 7:32.

You can find more information on looking after your wellbeing, watch our Psychological Wellbeing and Myeloma Digital Infoday Session.

If you have further questions or need support, contact us through the Myeloma Infoline at 0800 980 3332 (UK) or 1800 937 773 (Ireland) or use our Ask the Nurse email service.

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