Supporting someone with heart failure

There are many things someone with heart failure can do to manage their condition – and there is a lot you can do to support them. Here are some ways to provide support and places to get further help.

It can be frightening to hear that a member of your whānau has heart failure. However, it’s important to know that the heart isn’t going to stop working immediately. Instead, it means the heart isn’t functioning as well as it should.

Good management helps people with heart failure live well, stay out of hospital and have meaningful and fulfilling lives. There are many things someone with heart failure can do to stay well – and there is a lot you can do to support them.

What is heart failure?

Heart failure means that the heart isn’t working as well as it should. It occurs when the heart muscle becomes weak or stiff, making the heart unable to pump or relax as normal.

This is usually because of other conditions such as:

• a heart attack
• high blood pressure
• irregular heart rhythms
• problems with the heart muscle or valves.

In some cases, it can result from heavy alcohol use, an inherited condition or a virus. Occasionally the cause is unknown.

Learn more about heart failure

Signs and symptoms to watch for

When the heart isn’t pumping or relaxing properly, fluid starts to build up in other parts of the body, causing a range of symptoms. Checking these symptoms daily is an important way for someone with heart failure to monitor their condition.

How to do daily checks

There are some warning signs which can signal a change in condition and require action. These include:

• sudden weight gain or weight loss (up or down 2kg or more in a day or two)
• increased swelling in ankles, legs, tummy or back
• finding it hard to breathe when active or when lying down
• needing more pillows at night or sleeping upright
• new cough or wheeze
• unusual tiredness
• dizziness, particularly when standing up
• dry mouth or skin.

If you notice some or all of these symptoms, encourage the person you support to contact the doctor or heart failure nurse. The sooner they take action, the sooner the symptoms will be relieved, and it may prevent a visit to hospital.

A heart failure action plan and a daily checks record can be used to help manage symptoms.

Providing emotional support

Someone newly diagnosed with heart failure is likely to feel a range of emotions. These may include fear, confusion, shock, anger and denial. It’s important to reassure them, explain these feelings are normal and let them know they’re not alone. Here are a few tips that might help:

Listen – regularly make time to listen and talk with them about how they’re feeling.

Respect spiritual needs – ask what you can do to support these needs.

Encourage them to connect with others – talking to others living with heart failure will be helpful. Find a local support group or read stories from others living with heart failure.

Advocate if they need you to – ask if they’d like your support with medical appointments and other healthcare services.

Put a plan in place – having a plan to manage the condition and make lifestyle changes can help to reassure and provide some structure to life moving forward.

Acknowledge and encourage – managing a long-term condition and making lifestyle changes isn’t easy. Acknowledging their efforts and providing encouragement is vital to keeping the person you support on track.

Depression and anxiety

Feelings of anxiety or depression are common after a heart failure diagnosis. Expect ups and downs, but if a low mood continues for more than a couple of weeks, encourage the person you care for to speak to their GP. Or, if they’re reluctant, consider seeking help on their behalf.

For support, call or text 1737 to speak with a trained counsellor. Or visit the Mental Health Foundation for resources.

Help around the home

Personal care

Sometimes heart failure can make even the most basic tasks challenging. Check the person you care for is able to toilet, bathe, dress and get about the house. You may need to help them with some of these tasks or organise some external care.

Think about some simple changes you can make around the home to help day-to-day life. This could include putting a plastic chair in the shower, getting a lazy boy chair or stool to raise their legs when sitting and making sure the house isn’t too hot (heat can make swelling worse).

Managing the home

Check the rent or mortgage and other bills are being paid. If the person you support is struggling with finances, find out if they can receive financial support from the government.

Can you or a family member help with laundry or cleaning if this is becoming a problem? Or see if you can organise external support for this.

Ask if you can help with shopping or other tasks that need to be done outside the home.

If the person you care for is having difficulty with day-to-day activities, talk to their GP or heart failure nurse about getting a needs assessment. Or see the list of contact numbers at the bottom of this page.

Supporting heart failure self-management

There are lots of positive things people can do to manage their heart failure – and there’s a lot you can do to support them. And if you embrace the lifestyle changes too, you’ll be helping your heart as well as theirs.

Food for a healthy heart

A heart-healthy, low-salt diet will help manage heart failure and other heart issues. You can assist with planning, shopping and preparation or cooking of heart-healthy meals.

• Choose foods that are low in salt. Salt can make heart failure symptoms worse because it makes it hard for the body to get rid of fluid.
• Fresh vegetables, fruit, legumes, nuts, whole grains and oily fish are all heart-healthy choices.
• Processed foods and takeaways usually lack fibre, vitamins and minerals and tend to be full of salt, sugar and saturated fat. Keep them to a minimum.

Eating for a healthy heart

Heart-healthy recipes

Fluids

Water is the best choice for keeping hydrated.

Try to avoid sugary drinks like soft drinks, juices, energy drinks, sports drinks and iced teas, which are high in sugar and have little nutritional value.

If the person you support is retaining too much fluid, they may be advised to limit the amount of fluid they drink. Talk to the doctor or heart failure nurse about what’s appropriate.

Physical activity

Physical activity is one of the best ways people can stay well with heart failure. Encourage the person you support to:

• aim to increase activity to 30 minutes per day or more
• try a variety of different activities to keep it interesting
• find others to exercise with, such as your local cardiac group.

Staying physically active

Smoking and alcohol

Quitting smoking is one of the best things that can be done for heart health.

Some people with heart failure may need to reduce their alcohol intake or avoid it altogether. Talk with the doctor about what’s best for the person you support.

Quit smoking

Medications

The person you’re supporting will probably be on a number of heart pills. Taking the right pills at the right dose and time can help them:

• have fewer symptoms and feel better
• have improved heart function
• stay well and out of hospital
• live longer.

The person you support will need to keep taking their pills, even when they start to feel better. Heart failure pills are long-term medications that are needed for people to stay well and out of hospital.

The person you’re caring for should have their medication regularly reviewed. Over time their needs will change and so will medications, so a regular review means they will continue to get the ideal treatment for their needs.

You can help them make appointments and attend with them if they’d like your support.

Heart medications

Attending medical appointments

Attending medical appointments with your whānau is a great way to support them and learn more about their condition and treatment.

• Make a list of questions with the person you support before the appointment.
• Take a pen and paper with you to write down important information or ask if it’s okay to record the conversation on your phone.
• Speak up on behalf of the person you care for (if they’ve agreed to this).

You can support the person you care for by helping to book appointments, setting reminders and organising transport.

If they’re waiting for a test or appointment with a heart specialist, it’s okay to check with their GP or the hospital to find out when it’s likely to happen.

Looking after yourself

Supporting someone with heart failure can be hard work, so you must make time to care for yourself. Regular exercise, quality sleep and healthy food are just as important for you as it is for your whānau member with heart failure.

Take time for yourself – make time to do something nice for yourself each day. It could be as simple as going for a walk, chatting to a friend or watching a TV show. Make sure it brings you pleasure and gives you some time out.

Get emotional support – it’s important to share the stresses of supporting someone with heart failure. Organise a catch-up with a friend or find a local support group for carers. Tell your GP and your employer about your caring role. It’s important your GP knows about your own health, and your employer may be able to consider flexible working requests.

Ask for help – remember it’s okay to ask for help. Are there family members or friends who can share some of the jobs? There are also external support agencies listed on the back of this booklet. Asking for help when you need it will ensure your loved one gets the best possible care.

Stories from other carers

Where to get help

Supporting someone with heart failure ^PDF