Infopack for carers of myeloma patients

If you provide care or support to a myeloma patient, this Infopack is for you. For the purposes of this Infopack we use the term carer, meaning anyone who provides emotional, psychological or physical support and care to a myeloma patient. The Infopack provides you with information and practical tips to help you look after the person you care for, to look after yourself, and to access the help and support you might need. 

This Infopack covers key questions and topics that carers of myeloma patients have told us are important to them, such as:  

  • What is a carer? 
  • How to look after yourself when you’re caring for someone with myeloma 
  • Your moods and emotions 
  • How caring may affect your relationships with others 
  • Understanding myeloma treatment and side effects 
  • The healthcare team 
  • Work, finances and benefits 
  • Planning for the future 
  • How can I find support? 

Key points you can read about in this Infopack include: 

  • Identifying that you are a carer may help you to get the help and support you might need now or in the future 
  • Caring for someone with myeloma can take different forms, from practical tasks to emotional support and companionship  
  • Caring for someone with myeloma will have a significant effect on you, and you need to look after yourself as well as the patient. Factors to think about include diet, sleep, relaxation, support from others, issues at work, and taking time out 
  • A Carer’s Assessment can help to find out what support you might need now or in the future 
  • Although you are naturally focussed on the person you care for, your own emotions and mental wellbeing are important, both for you and for them 
  • A myeloma diagnosis affects many people, not just the patient. It can bring significant challenges and impact on the many different relationships you and the person you care for have, whether they are your partner, a family member or friend. Impacts might include effects on intimacy with your partner who has myeloma; effects on fertility and needs for contraception; and relationships with family and friends including helping children understand myeloma 
  • Understanding myeloma treatments and side effects can help you care for the myeloma patient. You may be able to help keep track of their drug treatments, and to watch for symptoms which may indicate serious complications (including infection, sepsis, spinal cord compression or blood clots) 
  • The patient’s healthcare team will be made up of a number of different specialists, and they are there to support you as the carer, as well as the patient 
  • Caring for a myeloma patient may have impacts on your finances and working life 
  • You have rights in the workplace as a carer. It is a good idea to tell your employer that you are caring for someone, so that they can support you  
  • There are a number of benefits that you may be able to claim as a carer 
  • Making plans for the future can help you, and the patient you care for, to get on with living now 
  • There are many different forms of support available to you as a carer, including national and local support organisations 
  • Myeloma UK provide a range of support to carers including the Myeloma Infoline and Ask the Nurse email service; information booklets; support groups; Infodays; and the Myeloma UK Discussion Forum 

Infopack for carers of myeloma patients

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