Recognizing the physical and emotional toll that caring for a loved one with a chronic condition has on the caregiver

Living with a chronic medical condition after surviving a heart attack or stroke may come with additional health and personal care needs. Often survivors must rely on a family member or close friend to help. However, there’s a growing body of scientific research that shows people who serve as unpaid caregivers may not be getting the care they need to live longer, healthier lives, according to the American Heart Association, celebrating 100 years of lifesaving service as the world’s leading nonprofit organization focused on heart and brain health for all.

The U.S. Centers for Disease Control and Prevention reports that one in five adults in the U.S. provide some form of regular care or assistance to a family member or friend with a health problem or disability; 58% of them are women and almost a third provide care for at least 20 hours per week.

There are many facets to caregiving, from providing health care such as changing bandages and giving medications, to helping with personal needs such as bathing, dressing and meal preparation. Additionally, it may be necessary to take on administrative tasks like scheduling medical appointments, filing insurance claims and paying household bills.

“The typical caregiver likely has an ever-growing and changing to-do list and most of them probably do not add ‘take care of myself’ to that list. While caregiving can be a very rewarding experience, it can also take a huge physical and mental toll on even the strongest person,” said American Heart Association volunteer Lisa Kitko, Ph.D., R.N., FAHA, dean of the University of Rochester (NY) School of Nursing and vice president of the University of Rochester Medical Center.

“There can be financial costs associated with caregiving, as well as significantly higher physical and psychological health risks. Social isolation and disruption of outside relationships have been observed among people caring for family members with chronic illnesses such as heart failure.”

Kitko served as chair of the writing committee for “Family Caregiving for Individuals With Heart Failure: A Scientific Statement From the American Heart Association” and “Engaging Families in Adult Cardiovascular Care: A Scientific Statement From the American Heart Association”, two of several scientific statements published by the American Heart Association to address the unique roles and needs of people caring for someone with a chronic condition.

In addition, research that shows more positive outcomes for patients when they have caregiver and family support in decision-making and care throughout the course of the medical journey is highlighted. However, there is little research to identify successful interventions to support the needs of the caregivers themselves.

On the other hand, there are several studies that show the toll of being a caregiver:

• A study published in Circulation, found that having a spouse in a hospital’s intensive care unit (ICU) may make a person more likely to have a heart attack or cardiac-related hospitalization themselves within a few weeks of the ICU admission.
• Two studies presented at the American Heart Association’s Resuscitation Science Symposium 2023 found that family members caring for loved ones who experience cardiac arrest often felt emotional and physical distress. A survey conducted as part of one of the studies found most of the study participants reported some form of psychological distress, with 66% experiencing anxiety; 29% experiencing characteristics of PTSD and 57% showing signs of moderate depression.

“The old saying, ‘take care of yourself so you can take care of others,’ are definitely words to live by for caregivers—everyone tells you that and it certainly makes sense, but it’s hard,” Kitko said.

“There is a lot of stress associated with knowing someone is depending on you, perhaps feeling as though there are barely enough hours in the day to care for them, much less yourself. However, you do need to consider that if you get sick, who is going to take you to the doctor, care for your loved one, handle the household chores and your job duties if you’re still working? That is why taking care of yourself really should be the first item on your caregiver checklist.”

According to Kitko, by making your own physical health a priority, you are going to be better able to help your loved one. The same is also true for your mental and emotional health.

A study published in Circulation: Cardiovascular Quality and Outcomes found that higher spirituality—meaning a positive perception of life within the context of society’s culture and value systems and in relation to individual goals, expectations, standards and concerns—was strongly linked to better quality of life for both stroke survivors and their caregivers.

Below are a few key pointers Kitko recommends to help caregivers care for themselves:

• Learn everything you can about your loved one’s condition. Knowledge is empowering.
• Set boundaries; say no when it’s appropriate, don’t dwell on what you can’t change and recognize you are trying your best
• Maintain a healthy diet, including limiting caffeine.
• Get adequate rest.
• Find a support system and share your feelings with someone who wants to listen or understands what you are feeling. The American Heart Association operates an online Support Network with a section just for caregivers at supportnetwork.heart.org.
• Nurture your spiritual life and focus on things you’re grateful for each day.
• Make time for yourself and for friends; participate in activities you enjoy, including getting regular physical activity.
• Keep an eye on your own health, stay current with your medical and dental appointments and let your health care professional know if you are experiencing signs of depression which can be managed with talk therapy or medication.

You will also want to be prepared for possible medical emergencies:

• If you are caring for someone at risk for a heart attack or stroke, recognize the warning signs and call 9-1-1 if they experience any of those.
• Learn Hands-Only CPR. Research shows most out-of-hospital cardiac arrests happen in the home. Be ready to save the life of a loved one experiencing cardiac arrest: Call 9-1-1; and push hard and fast at the center of the chest.

“Many caregivers are at the other end of the spectrum and may be closer to preparing for end-of-life care. There are many options and resources to help you and your loved one also face these difficult times,” Kitko said. “Planning ahead can take a lot of stress out of any caregiver duties.”