Caring for Someone with Heart Failure
Developed in partnership with the Ontario Caregivers Organization
Heart failure is a very common condition where the heart is unable to meet the demands of the body. In general, heart failure can be treated, but not cured. However, many treatments are available to help patients live longer and better.
As a caregiver for someone living with heart failure, you may find yourself assisting or supporting the lifestyle modifications involved in condition management. Medical coordination, personal care, and treatment decision making are all examples of common caregiver duties.
Key Caregiver Definitions:
- Essential caregivers: UHN defines an Essential Care Partner (ECP) as a support person who is considered essential to the safety and well-being of a patient while they are in the hospital. They can be a family member, friend, neighbour, paid private caregiver or someone else that you choose.
- Substitute Decision Maker: A substitute decision maker is the person a healthcare provider would consult if you became too sick or unwell to make decisions for your health. Everyone in Ontario has an automatic substitute decision maker.
Learn more: https://www.speakupontario.ca/resource/the-substitute-decision-maker-hirearchy/
Essential caregivers are not necessarily a patient’s SDM.
As a caregiver, you may need to provide practical support, such as scheduling and getting your care recipient to medical appointments, arranging home care visits, and doing more tasks around the house.
You may also need to ensure that important papers are organized and kept in a safe place. This can include insurance documents, wills, and other legal or financial papers.
- If your employment is impacted by your caregiving role or if your care recipient can no longer work, you may be eligible for various forms of assistance from the Government of Canada
- Ask your family and friends for help with tasks like driving your care recipient to appointments or grocery shopping. Often, people want to help but just don’t know how to – communicating specifically about what you need and when you need it is useful for both you and your family and friends
- Encourage your care recipient to make healthy lifestyle choices, including proper nutrition and regular physical activity. Check with your care recipient’s medical team to determine when they can start exercising and what kind of activities they can do
- Get involved with your care recipient’s cardiology team: take an active role in understanding the condition, available treatments, and outcomes and developing relationships with clinicians and nurses
- Ask questions when you can and don’t be shy when trying to find answers. Remember: patients and caregivers have rights, and you deserve to be kept informed
- Provide the healthcare team with feedback and be empathetic to their hard work
- An important part of a caregiver’s job is to support symptoms management and self-management. To become more familiar with the symptoms of heart failure, visit the What is Heart Failure page. Caregiver tips:
- Remind your care recipient to take breaks/relax when needed.
- Assist with checking symptoms:
- Monitor for swelling, shortness of breath, dizziness
- Measure heart rate and blood pressure
- Assist with weight check-ins
- Identify other health issues (such as other heart conditions, diabetes, etc.)
- Monitor for cognitive changes (such as confusion, mood changes, etc.)
As a caregiver, it’s also very important to make choices that promote your own mental, physical, and financial health.
- Determine what you are and aren’t comfortable doing. Get help for the tasks you aren’t comfortable with
- Look into what free and paid home care services are available where you live
- Keep organized – develop a tracking system to manage appointments, symptom tracking, and appointments, such as MyChart
- Create a list of key contacts and phone numbers (such as doctors, cardiologists, and other members of your care recipients’ healthcare team) and share it with all healthcare providers and family members involved in the care circle
- Make time for your own regular physical activity
Help with Managing Medications
You may be responsible for giving and storing medicines. This includes giving the correct dose of medicine and keeping track of when medicine was taken.
If you are not comfortable administering medication, look into what home care services are available in your area or consult with your local pharmacist.
- Keep a list of medications your care recipient is taking and bring it to all appointments
- Keep a list of your care recipient’s major health events (such as heart attack, heart episode, major surgery, and other major health episodes)
- Ask your local pharmacists for tips on how you can safely administer medication. Building a relationship with your pharmacist can be very helpful
- Have a designated time during the week to organize medications. It’s best to do this in a quiet place, free from distractions
Healthy Eating and Fluid Restriction
Dietary changes can aid in the prevention of complications and the relief of symptoms.
- Ask your care recipient’s healthcare team for information on how you can help select and prepare proper and nutritious food
- Learn how to read nutrition labels and make it a habit to check them when you go grocery shopping
- Assist with preparing heart healthy foods
- Assist with monitoring fluid intake
- Call ahead to restaurants to inquire about dietary accommodations
Learn more about heart Healthy Eating.
Communication Support and Relationship with Your Healthcare Team
As a caregiver, you may need to attend your care recipient’s appointments and communicate with their healthcare team. You may also need to speak on their behalf, especially when they experience challenges related to communicating or language.
- Bring a list of your questions and concerns to appointments (and maintain a list between appointments)
- Listen and write down information during appointments
- Act as a translator if your care recipient does not speak English or does not speak English as a first language. Be aware that it is your right as a caregiver to request professional interpreters in healthcare settings, especially when medical information needs to be interpreted
- If speaking is challenging for your care recipient, phrase questions they can answer with a “yes,” “no,” or a nod or shake of the head
- Speak in a conversation and relaxed voice. Taking pauses and speaking at a moderate pace may help the person you care for understand you
- Have only one person speak at a time
- Speak up when you or your care recipient does not understand what is being said
- Know your rights as both a patient and caregiver advocate
- Explain any cultural considerations with your healthcare providers
Medical Interventions and End-of-Life Care
At some point, you may be required to make decisions about medical interventions on your family member’s behalf. You may also need to make decisions about end-of-life care, which is a very difficult and emotional responsibility.
If your care recipient is still able, talk to them about their wishes for future care. An open conversation now will help prepare you to make decisions about medical interventions and end-of-life care on your care recipient’s behalf as the disease progresses. Making decisions together can also give you both comfort and peace of mind.
- Instead of focusing on medical interventions, your conversations should focus on your care recipient’s values
- What makes life worth living?
- What kind of living would they accept?
- What trade-offs would they make?
- What would make prolonging life unacceptable for them?
- When nearing death, what would make it peaceful for them?
- Visit our Advance Care Planning page for more tips on how to start this difficult conversation
- Talk to your care recipient’s healthcare team about any questions or concerns you may have regarding end-of-life care, including options for hospice and palliative care
The Ontario Caregiver Helpline is here for you.
Call 1-833-416-2273 (CARE)