Being a carer of a heart failure patient

We know it’s not easy being a carer(giver) of a person suffering with heart failure. You’ll have great days, good days, indifferent days and days you could do with forgetting. Our best advice to you is as follows.

In most cases heart failure can be managed through great clinical care at the right time with the right people with the right drugs and interventions, a positive attitude and belief in self management. Ok it’s not that simple but if you can help get these right for the person you are a caring for then their quality of life becomes a lot better.

We suggest you can really help the one you are giving care to if you focus on

  • Ensuring they get the best medical advice and treatment. In the UK although they are very wordy it’s worth looking at the NICE (National Institute for Health and Care Excellence) guidelines for Acute Heart Failure and Chronic Heart Failure as well as guidelines on CRT (cardiac resynchronisation therapy).
  • Planning and accompanying the person you are caring for to appointments at first is a useful task to do as it sets the scene for the very important relationship building with the cardiologist and heart failure nurses.
  • Making sure you help them in making decisions, be the person to be leant on if needed but remember you have a life as well.
  • We find peer to peer learning is a great for patients so why not carers(givers). There are some excellent facebook pages set up by patient groups. They can help you problem solve by sharing experiences, why not try our facebook group which is private
  • Make sure you get time to yourself and your hobbies. It’s a two way partnership and you need to consider your health.

You may also find this useful, it is our carer mini toolkit which you can download. It has been written by carers of people with heart failure, click or tap here to download.

Carer / Caregiver Charter

The Carer and Patient must get their relationship balanced. Let’s face the facts; it is the patient who will lose out if the Carer is not respected and looked after. Below you will find a list of your rights as a carer from our viewpoint. Pin this on your fridge door or somewhere where the patient can see it.

  • Take care of myself. Not an act of selfishness. It will enable me to take better care of my loved one
  • Seek help from others even though my loved one may object. I recognise the limits of my ability, endurance and strength
  • Maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself
  • It is my right to get angry, be depressed and express other difficult emotions occasionally
  • Reject any attempt by my loved one (either consciously or unconsciously) to manipulate me through guilt, anger or depression
  • Receive consideration, affection, forgiveness and acceptance from my loved one for as long as I offer these qualities in return
  • Take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one
  • Protect my individuality and my right to make a life for myself that will sustain me when my loved one no longer needs my full-time help
  • Expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons. Similar strides will be made toward aiding and supporting carers

Click on the image to read more about what it’s like to be an effective carer. This booklet has been authored by carers like you.

Heart Failure carers toolkit

A comprehensive read on how to help someone with managing their heart failure.

Heart Failure carer booklet