Caring for someone with congestive heart failure (CHF)

heart failureThere is no ‘I’ in caring for someone with congestive heart failure. Actually there are many, but the point is that this condition affects directly one person, but when all is said and done there will be many broken hearts. One heart must be stronger than all, though, and it’s the caregiver’s. Hopefully the following will help you and your loved one with CHF endure the hardships that come with this disease.

                                                                     Congestive heart failure overview


CHF is a chained reaction in which the heart pumps less blood, which results in fluid backing up in the lungs and, in turn, the body not getting enough oxygen. At the same time, the kidneys are not able to remove fluid, which builds up in other parts of the body. CHF starts in the heart but can affect most of the rest of the body.


  • Residual damage following a heart attack.
  • Hypertension.
  • Damaged heart muscle from infections or other causes.
  • Severe lung disease.
  • Heart valve problems.
  • Other conditions such as obesity, diabetes, chronic kidney disease, or arrhythmia.


  1. The heart enlarges, stretches, and weakens.
  2. The heart increases muscle mass.
  3. The heart pumps faster.


Managing congestive heart failure at home

As a caregiver for a person with CHF you are going to need:

  • A scale to monitor daily weight, and a plan to address sudden weight gain – which may indicate further issues.
  • Routine medications and a diet plan, plus drugs to immediate treat pain, shortness of breath, and weight gain.
  • A plan for whether to go to the ER in case of an emergency, and whether to attempt CPR.

Basic management

  1. Keep a daily log of


  • Breathing patterns.
  • Medications.
  • Diet and activities.
  • Symptoms.
  • Any other info that can be discussed with a doctor.
  1. Call the doctor if there is
  • A gain of 3lbs or more in a few days or a week.
  • Increased swelling in hands, ankle, and feet.
  • Difficulty breathing.
  • Coughing at night.
  • Confusion.
  • Dizziness.
  • Faintness.
  • Nausea.
  • Vomiting.
  • Increased fatigue.
  • Muscle weakness or cramps.
  1. Who you gonna call?
  • Medical contact



Phone number


  • Alternate contact



Phone number


  1. Prepare information for the doctor
  • See * below.
  1. Action plan
  • Don’t panic.
  • Call the doctor or nurse.
  • Follow instructions.


*Information for the doctor

Chest pain

  • Location.
  • Characteristics.
  • When it started.
  • Whether it is constant or intermittent.

Weight gain

  • Patient’s normal weight.
  • How many pounds he or she has gained.
  • Over how many days the weight gain occurred.


  • Where.
  • For how long.

Difficulty breathing/coughing at night

  • When it started.
  • What makes breathing difficult.
  • What makes it better.

Decreased urination

  • Number of times patient has urinated in the past 24 hours.
  • Urine color and odor.



  • How long


Increased fatigue

Muscle cramps/weakness

  • Part of the body.
  • For how long.


Caring for and helping oneself

Caring for someone with congestive heart failure is no easy task, and to be up for it the caregiver needs all the help he or she can get, as well as take damn good care of his or herself.

CHF caregiver challenges


CHF may be unpredictable, so keeping an eye open for patterns whenever they appear can be useful. For example, pay attention to certain symptoms, follow basic guidelines, and keep in touch with the healthcare team.


Caring for a person with CHF can be like juggling naked – too many balls in the air. If you feel like things begin to slip away from your grasp, get help immediately, starting with the primary healthcare provider.


But maybe you find yourself with no one to turn to. This is because caregivers often, deliberately or unwittingly, isolate themselves. If that’s the case, you should try and rekindle your connections with family in friends – and failing that, join a support group.


Ask doctors, nurses, social workers about, or search online for, support groups.

Tips for caregivers

  • Maintain communication with doctors and nurses from the very beginning.
  • Ask a social worker about facilities and services available in your community, including those provided by Medicare and Medicaid.
  • If a face-to-face support group is not your cup of tea, try an online one.
  • Research authoritative sources for important information.
  • Do not be afraid or ashamed to ask for and accept help from friends and relatives.
  • If you can afford it, hire a home health aide when you need some respite.
  • Ask friends and family to substitute for you whenever necessary.
  • Consider adult day care centers and other facilities.
  • Ask a friend or relative to help with chores like grocery shopping, cooking, mowing the lawn, etc.
  • Rethink your priorities; housework can wait a while.
  • Do not blame yourself if there comes a time when a nursing home or assisted living facility is more equipped to handle your loved one’s needs better than you can.


Living with congestive heart failure

The role of a caregiver is not just a palliative one; there are several things you can do to improve the quality of life of your loved one with CHF.

Lifestyle changes:

  • Keep track of medications.
  • Observe a diet that’s low in salt/sodium.
  • Encourage the person to quit smoking – and set an example by quitting yourself – if they do.
  • Promote exercise.
  • Procure an annual flu vaccination.
  • Limit alcohol intake.
  • Ask a doctor or pharmacists about cold medicines and other OTC medications.
  • Do not neglect emotional health.

Keeping track of medications

Make a chart!





























































Limiting salt/sodium consumption

  • Read food labels for salt/sodium content.
  • Like Jimmy Buffet in Margaritaville, lose your shaker of salt.
  • Replace salt with spices, herbs, garlic, oregano, basil, curry, onion, parsley, rosemary, lemon juice, etc.
  • Favor fresh vegetables, fish, poultry and meat over their canned counterparts.
  • Avoid salted crackers, muffins, and biscuits.

Emotional health

Keep an eye open for symptoms of depression in your loved one, including:

  • Changes in appetite and sleep.
  • Guilt.
  • Hopelessness.
  • Despair.
  • Fatigue.
  • Withdrawing from others.
  • Not enjoying activities that used to be pleasant.
  • Suicidal ideation.

Or you can just ask them straight up whether they are depressed. Maybe they’re just waiting for you to inquire.


Thinking about the future

There was a time when people with congestive heart failure could go out just like a candle in a thunderstorm. However, new drugs, improved care, and of course caregiving have teamed up to give these patients a new lease on life. The thing is that this lease is more often than not a fixed-term tenancy. You must do all that you can to make this time – short or long – as comfortable as possible for your loved. The way to do that is not in fact to ignore issues or hiding them from the patient. Both of you must face them head-on together. Granted, topics such as end-of-life care and resuscitation – or lack thereof – are very delicate and require a careful approach. One such approach is to ask the person with congestive heart failure ‘what if’ questions:



What if

You have pneumonia? What kind of treatment would you want?

You can’t breathe without mechanical assistance?

You can’t talk or write to communicate?

Someone else has to speak for you?

Doctors recommend removing machines?

What if you can’t breathe without mechanical assistance?

The patient may have to be connected to a machine called a ventilator in order to help them breathe – or so that they can breathe at all. Keep in mind that ventilators

  • May interfere with the ability to communicate or swallow.
  • Help keep the person alive but do not cure them.
  • May be uncomfortable.

And that the patient

  • May not be able to recover enough to breathe without the machine.
  • May require extra sedation.
  • May require many blood tests and x-rays to monitor his or her condition.

What if doctors recommend removing machines?

Using a ventilator implies the question of stopping its use at some point. Not only the doctor’s input should be taken into account here; yours, and more importantly, the patient’s must be considered as well. Keep in mind that treatment – which in addition to ventilators may include tube feeding, IV hydration, and antibiotics – can be stopped and even refused at the patient’s request. Similarly, cardiopulmonary resuscitation – the standard procedure when the heart stops and blood ceases to circulate – may not be desired in the case of a patient with an extremely serious, chronic disease.

What if you can’t talk or write to communicate?

The patient’s opinion and whishes must be respected even when his or her voice is no longer heard. This can be accomplished by establishing a series of measures known as advanced directives. As the name implies, they are set up well in advance, when the patient can still make and communicate informed decisions. Examples of these directives are living wills, durable healthcare powers of attorney, and healthcare proxies (more on that later). For instance, the patient can have the doctor add a do-not-resuscitate (DNR) code to the medical chart to prevent resuscitation.

What if someone else has to speak for you?

When someone else – who may very well be the caregiver – has to speak on behalf of the patient, that person is a healthcare proxy. This individual may also be known as a surrogate decision-maker, and is appointed by the patient with CHF. This person is kind of like the Raul to the patient’s Fidel, endowed with the authority to make decisions if the patient is too ill to make them themselves.

This is all well and good, but the patient is not the only one who needs to be asked question. The doctor is there among many things to answer your questions, such as:

  • What kind of complications do people with CHF usually face?
  • How long do patients usually live?
  • What kind of long-term treatment do they need?
  • What are the best and worst case scenarios?
  • Can you plan ahead for potential medical issues that may arise?
  • How will congestive heart failure affect your loved one and your family?

The sooner you ask these and other questions – and the straighter answers you get – the easier it will be for you to perform your caregiver duties.

Related Read:

- Caregiving During Flu Season