Ask the Nurse: Practical advice for caring for someone with myeloma

Many of us do not think of ourselves as carers but as loved ones doing their part. However, a carer is anyone who provides unpaid care and support to a relative or friend who cannot manage without it. Identifying as a carer may help you get the help and support you might need now or in the future.

Caring for someone can be unpredictable, demanding, and difficult to manage alongside other responsibilities. People can become carers unexpectedly and may find that they must take on tasks and roles that are new to them, which can be both challenging and rewarding.

This month’s blog covers some practical advice that family, friends, and carers ask about on the Myeloma Infoline.

Who cares for the carer?

All too often, carers can let their own needs take a back seat while they are preoccupied with the health and wellbeing of the person they care for. But your health and wellbeing are equally as important as the person you look after.

Make sure you know how to care safely (e.g., don’t risk injuring your back through lifting incorrectly), eat as well as you can, get as much rest as possible, and find out what works for you in alleviating stress.

To help look after yourself, you can apply for a carer’s assessment. This gives you a chance to talk to a support worker about the impact of being a carer on your life, ways of managing your caring role and help to find support services (including breaks from caring).

Contact your local council’s social services department (or social work department in Scotland) to get a carer’s assessment.

Watch Marion and John talking about the impact of myeloma on a carer.

How do I take a break?

As a carer, it is important that you get some time to yourself to pursue your hobbies and interests, have a break or catch up with friends.

In addition to family and friends helping, you may also be able to receive help for replacement care from your local social services department (part of your local council).

Replacement care typically follows from a carer’s assessment and might include:

  • Short-term residential care for the person you care for
  • Getting more paid help at home with paid workers carrying out household duties or care of the myeloma patient
  • Getting someone to look after the person you care for while you go out
  • The person you care for taking part in activities outside the home
  • Having a holiday with or without the person you care for

It is important to know that you may be charged for replacement care.

What financial support can I apply for?

You may be able to get help to increase your income if your caring duties are affecting your finances. Depending on your income, assets and living arrangements, you might be able to:

Read our blog on support during the cost-of-living crisis and our Benefits and financial support Infosheet for more information on benefits and allowances that may be available to you.

What are my rights at work?

Juggling work and care can be very challenging, so finding out about your rights is important.

Carers UK has information on statutory carers’ rights in work across the UK.

You may also have contractual rights on top of your statutory rights, so it’s worth checking your employment contract, staff handbook, and HR policies.

If someone has cancer, the law considers this a disability, even if they are in remission. Therefore, if you look after someone with myeloma, the law will protect you from discrimination or harassment because of your caring responsibilities.

In England, Wales and Scotland, carers are protected under the Equality Act 2010. In Northern Ireland, carers are protected under the Human Rights Act and Section 75 of the Northern Ireland Act.

If you need further support, the Equality Advisory and Support Service and ACAS provide free, impartial advice on workplace rights, rules, and best practice.

What if something happens to me?

As a carer, you need to know that replacement care will get sorted out quickly and efficiently if an emergency happens.

We advise all carers to create an emergency plan – for you and for those you look after. Having a plan in place can help ease your worries if you are unable to care for those you look after at any point in the future.

Carers UK has developed an interactive online tool to build a personalised emergency plan. This will include details of the name, address, treatments, GP, care and support needs of the person you are supporting, as well as an alternative emergency contact for you both.

Sharing your plan with trusted family members, friends, and healthcare professionals is a good idea.

Who can I talk to about being a carer?

It is important to make the time to speak to others about yourself and how you are doing, and not just about the person you care for.

Family and friends can be a great source of support, but there may be times when you find it easier to talk to people outside of your family or network of friends. Joining a Myeloma Support Group, such as our dedicated Friends and Family Support Group, can provide a good opportunity to discuss your feelings with other carers who are in, or have been in, a similar situation.

You can also find support from others through:

Our Myeloma Information Specialists are here to answer your questions, listen to you and offer reassurance, support, and practical advice if needed. If you have any questions or concerns, you can get in touch by calling the Myeloma Infoline (0800 980 3332) or emailing the Ask the Nurse service.

For more information, read our Infopack for carers of myeloma patients or watch the recording of our Digital Infoday Session: Coping as a carer.

Close-up photograph of a hand holding a mobile phone.

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