Caring for someone with cardiomyopathy

Supporting someone with cardiomyopathy

Looking after someone with cardiomyopathy can impact your life emotionally, physically, and financially. You might not think of yourself as a ‘carer’; maybe you’re a partner, parent, friend, or sibling, just doing what you can to help. But if you support someone regularly, that means you could be entitled to extra help.

Why identifying as a carer matters

Many people see their support as “just part of being a parent/partner/friend”. But identifying as a carer can help you:

  • Access financial support, such as Carer’s Allowance
  • Get help balancing work and caring responsibilities
  • Have a carer’s assessment through your local authority
     
Supporting someone emotionally

When someone you care about is coming to terms with a diagnosis of cardiomyopathy or recovering from something such as surgery or an ongoing diagnostic test, it’s completely natural for them to feel a rollercoaster of emotions. 

Here are a few gentle ways you can support them while they adjust:

  • Ask how they’re feeling and really listen. Just being there to hear them can make a big difference.
  • Reassure them  let them know you’re by their side and that whatever they’re feeling is completely valid.
  • Encourage them to open up, whether with you, a friend, or someone else they trust. Talking can help ease some of the emotional load.
  • Support their independence, help them do what they can for themselves and cheer them on along the way.
  • Celebrate the wins, however small they may seem. Every step forward counts.
Taking care of yourself matters too

Caring for someone can sometimes be physically and emotionally demanding. On top of everything else, you may be balancing work, family life, or your own health, it’s easy to put yourself last. But looking after your wellbeing is just as important as the support you give to others.

When you’re feeling strong, rested, and supported, you’re better able to care and cope. 

Here are some gentle reminders to help support your own wellbeing:

  • Share the load and ask family members, friends, or neighbours to help where they can. Even with the small things.
  • Take regular breaks and step away when you can, even if it’s just for a walk, a chat with a friend, or regroup.
  • Look after your mental health caring for someone can bring worry, or even feelings of isolation. Talking to someone about how you’re feeling, whether it’s a friend, support group, counsellor, or your GP, can really help.
  • Make time for connection, keep up with hobbies, social activities, or anything that brings a sense of joy and helps you feel like yourself.
  • Prioritise your physical health too, try to eat well, stay active in a way that works for you.
  • Speak to your workplace, many employers can offer flexible working, carer’s leave, or time off for hospital appointments.
  • Social services can carry out a carer’s assessment and needs assessment to make sure you get the services you’re entitled to.

     
Carers Act 2014

Under the Care Act 2014, local councils in England must support adults who need care and that includes unpaid carers. The law says councils should look at both your needs and the person you care for. They should also offer clear information about your rights and what help is available locally.

If you’re caring for someone, you have the right to ask for a carer’s assessment. This is a chance to talk to your council about how caring affects your life and what support could help you, from practical help and local services to emotional support or financial advice.

If the assessment shows that you need support, the council may offer you services or other help.

Find out more about the Care Act:

GOV.UK Website     Carers UK

 

Money matters

If you’re caring for someone for at least 35 hours a week, you might be able to claim Carer’s Allowance, even if you don’t live with the person or aren’t related to them. This could help with day-to-day costs.

 Learn more here 
 

Helpful Organisations

If you’re looking for practical advice or emotional support, there are organisations that can help. They offer everything from information and listening services to respite care and financial guidance. Here are some trusted places to start:

 

Carers Trust 

 

How can we help 

Speak to our Cardiomyopathy Nurse Specialist by phone, webchat or email. Call our nurses helpline on 0800 018 1024, the lines are open Monday to Friday, from 8:30am - 4:30pm.

Our Cardiomyopathy UK Specialist Nurses are here to listen, answer your questions and share their expertise for as long as you need. Our free helpline is staffed by our team of specialist cardiac nurses, Jayne, Caryl and Emma. 

Useful Resources
Support for Carers
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