Topic Overview
Talk with doctors, therapists, and counselors about how to help a
friend or relative living with
heart failure.
Most people don't hesitate when they are called upon to help a loved
one who is ill. But being a full-time caregiver may be an unfamiliar role
for you. It is important to consider the long-term implications of this
commitment, because so many people with heart failure will progress to an end
stage of their disease and will need assistance to survive.
Helping with daily activities
The person you are caring for may have considerable physical
limitations and must rely on others for help with relatively simple but
important tasks. You and your family may choose to assume a large role in
managing day-to-day tasks. Some of the ways in which you can help are listed
below.
- Shopping for and preparing food. Many people with severe heart failure cannot leave the house on
their own to shop for food. You can help shop for heart-healthy, low-sodium foods. Also, you may be involved with preparing these types of
meals.
- Cleaning. Simple cleaning tasks can
be too physically demanding for someone with heart failure. You may want to
help clean your loved one's house regularly or hire a maid service.
- Driving. A person with heart failure may no
longer be able to drive because of irregular heart rhythms, fainting spells, or
other complications of heart failure. But he or she will need to go to
frequent doctor appointments and will need someone else to drive to these
appointments and to other destinations too.
- Drugs. Most people with heart failure require multiple
medicines to control their symptoms. Many of these drugs must be taken several
times each day. Make sure that the person can afford to pay for the medicines.
Help your loved one by organizing the drugs, perhaps using a pillbox with one
compartment for each day of the week or marking a calendar to help keep track
of when to take medicines.
- Monitoring symptoms. If your loved one cannot keep track of his or her own weight,
you may need to help. Even small changes in weight can signal a dangerous
buildup of fluid. You should encourage your loved one to weigh himself or
herself at the same time every day and to call the doctor if there is a sudden
increase in weight. Call the doctor if other symptoms of heart failure get
worse.
- Stairs. If your loved one has trouble
getting around because of heart failure, you may need to consider rearranging
his or her house to make daily tasks easier to do. People with severe
heart failure should not have to climb stairs on a routine basis. If possible,
move your loved one's bedroom to the main floor of the house. If the bathroom
and bedroom are on different floors, a bedside commode may be very helpful.
- Temperature. Symptoms of heart failure
often get worse during hot, humid days. Use an air conditioner during the
summer.
Giving emotional support
You can help provide the emotional support that your loved one
needs by:
- Offering encouragement. Adopting the lifestyle changes that doctors recommend for heart disease
can be difficult for your loved one. Encourage him or her to start slowly and
gradually build up to an overall goal.
- Offering help and also encouraging your loved one to remain active. Even though your
loved one may have physical limitations, he or she should still try to stay as
active as possible. Moderate exercise and doing simple tasks around the house
can be safe. This can help your loved one feel better both physically and
mentally. If you are concerned about what activities are safe, talk with the
doctor.
- Asking if you can participate in doctor visits. You can offer support by sitting in on doctor visits and taking
notes. This can help your loved one remember important instructions. He or she
may also feel less alone during recovery.
Living through the last weeks or months of progressive heart failure
can be a very difficult process, requiring all the support a family can
muster.
Looking after yourself
Being a caregiver can be mentally and physically challenging. There
are steps you can take to help make the situation more manageable for yourself.
Remember that you will be an effective and loving caregiver only if you are in
good physical and mental shape.
- Enlist help when you need it. If possible, don't take on all the responsibilities yourself. You may be
able to involve other family members or a visiting nurse. Or you may be able to hire a food
delivery or housekeeping service to help with the shopping and cleaning. There
may be services available within your community to help. Check with local
government agencies, service clubs, and churches.
- Take time for yourself. Being a caregiver can be stressful and
time-consuming. To avoid "burnout" and to continue to provide care and support,
it is important to save some time for activities that you enjoy.
- Seek emotional support if you need it. Being a caregiver
to a loved one whose health is deteriorating can be emotionally difficult. If
you are having trouble coping with your feelings, seek advice and counseling
from family members, trained mental health professionals, or spiritual
advisors.
Seeking outside help
Some families need outside help to care for a loved one with
heart failure. If all of your family members work, it
may not be possible to care for your loved one at home. Some people with heart
failure require more care than their family can reasonably be expected to
provide. In these cases, you may consider placing your loved one in a long-term
care facility.
The available long-term care options depend on your loved one's
level of independence and need for supervision. Some people with heart failure
are relatively independent and able to perform basic activities on their own,
but they need assistance in preparing meals and sorting their medicines. These
people may be well cared for in a supervised living facility that provides food
and staff but not routine nursing care. Other people may have difficulty
performing basic activities and may get better care in a nursing home where the
staff can assist them with eating and bathing. In a nursing home, nurses can
track your loved one's symptoms and make sure that they take their drugs
appropriately.
It is important for people who are in long-term care facilities to
feel that they are still a part of their family. Frequent visits by family
members or day trips to the family home go a long way in improving these
people's emotional health.
Considering the end of life
It is important for families to be willing to discuss end-of-life
issues with both their loved one and his or her doctor. A clear decision needs
to be made regarding what to do if your severely sick loved one becomes even
sicker. You and your loved one should decide whether life-support measures
should be used if your loved one's condition becomes more severe. Discuss these
issues with your doctor.
Some people feel very strongly that every possible medical
treatment should be used to prolong their lives. Others feel that if there is
no reasonable chance of their health improving, then the only measures that
should be taken are those that make them as comfortable as possible. This is a
very personal, and can be a very difficult, decision.
It is much easier to make this decision when your loved one feels
relatively healthy and is able to openly express his or her wishes to a family
member or friend. Even if it is uncomfortable, try to give your loved one
support during this tough time.
Helping you pay for health care
Fortunately, both large and small foundations exist to help people
pay for medical care that they could otherwise not afford. Many of the
foundations offer grants to pay for other services beyond health care. Many
hospitals in the United States are not-for-profit institutions whose mission is
to provide high-quality health care to the communities they serve. In many
instances, this goal includes delivering medical services to people who cannot
pay for care.
There is also assistance for people who cannot afford the medicines
prescribed for their disease. In the case of medicines, drug manufacturers who
have developed patient assistance programs (PAPs) distribute free or discounted
medicines to people who otherwise could not afford them.