Caring for the Caregivers: Recognizing the Challenges

October 22, 2015

A heart attack or cardiac surgery is a major event. It has a ripple effect that impacts not just the patient, but family and friends as well. Lives can change, often for the long term, casting loved ones in the role of caregiver. These changes can be stressful, unexpected and, over time, draining.

A report out last week from Health Quality Ontario shows that one of every three people acting as a caregiver to a loved one, experienced feelings of depression, anger or distress. That number doubled from the previous report five years earlier. Many of these caregivers feel that they are too stressed to continue.

“In many ways, the patient often has it easier,” said Patti Robbins, a rehabilitation nurse at the University of Ottawa Heart Institute, with more than 30 years’ experience working with recovering patients and their families. “They go along for the ride.” Family members, on the other hand, can feel completely overwhelmed, thrust into an abnormal situation with lots of questions and uncertainties.

Caregivers, above all, are scared, Robbins said, scared that their partner may not wake up; scared about having to deal with whatever might arise once they’re at home; scared of what their loved ones’ condition might mean for their daily lives.

While patients are in the hospital, Nurse Coordinators ensure that families are fully supported. But after discharge, things are very different. Patients and their families return home and, all of a sudden, it’s just them.

“Everybody rallies during the acute phase,” said Jane Brownrigg, Clinical Manager of Cardiac Rehabilitation. “And then we send the patient home and reality sets in.”

That reality can be difficult, as both patients and their caregivers (usually spouses, but also parents or adult children) grapple, not just with recovery, but also with a whole slew of related issues.

The Pressures of Caregiving

Caregivers can experience a range of emotions and impacts as a result of their loved ones’ cardiac event:

Anxiety and Stress: The partner of a cardiac patient can have as much, if not more, anxiety and stress than the patient, said Heart Institute psychologist Heather Tulloch, PhD. This isn’t surprising. While the patient is focused on recovery, it is the caregiver who must worry about everything else—running the household, taking care of the recovering partner and dealing with all the other aspects of daily living that still require attention. 

Changed Roles: Generally in a household, there is a division of labour. One partner may take primary responsibility for inside activities like cooking or cleaning, while the other may handle outside activities like yard work or shovelling snow. When one partner can’t manage his or her traditional areas of responsibility, the other needs to step in. Taking on unfamiliar roles can add to anxiety and stress.

Uncertainty About the Recovery Process: Patients are told they need to be physically active every day to speed their recovery. Caregivers can be understandably anxious about whether loved ones should be active so soon after such a major health crisis. “The most common thing I hear is that caregivers are afraid of patients overdoing it,” said Brownrigg. Overprotectiveness is extremely common, but added occupational therapist Linda Varas Brulé, “It’s good for patients to do as much for themselves as they can.”

An Overwhelming Sense of Responsibility: In the hospital, an entire team of people is committed to the patient’s recovery. Back at home, caregivers can feel that the full responsibility for their loved ones’ recovery is on their shoulders. That includes everything from administering medications to encouraging recommended healthier habits and dealing with the logistics of multiple medical appointments, transportation and meals. And when patients don’t make the lifestyle changes recommended by health care professionals, caregivers can often feel they are the ones who have somehow failed.

Feelings of Frustration or Anger: Patients and caregivers both know what’s needed for a good recovery: sleep, a healthy diet, physical activity, quitting smoking and stress management. But making the lifestyle changes to realize these goals can be challenging, and things don’t always go as planned. As Brownrigg noted, caregivers can’t force change, as much as they might wish it, and that can be hard to accept.

Distress at Cognitive Changes: Cognitive changes after a cardiac event are one of the greatest sources of anxiety and stress, said Brulé. But they’re normal and don’t have to be alarming. “We don’t expect someone to get up and run and jump,” she noted. “It’s the same thing with cognition.”

Assessing cognitive changes is a big part of the rehabilitation process, to ensure patients receive the help they need to deal with such changes, as well as with the emotional impact of their cardiac event. The involvement of caregivers is especially important here, as they can alert the health care team to changes in cognitive performance.

Caregivers can also play a role in repairing cognitive deficits, by playing memory or word-matching games, for instance. “The family really loves to get involved with that,” said Brulé.

Helping Caregivers Cope

Helping caregivers cope with these pressures is a priority at the Heart Institute. One of the main things the Rehabilitation team does, said Robbins, is to “normalize the abnormal.” This means providing reassurance that what patients and caregivers are experiencing is a normal part of the recovery process. In addition, the team provides support for caregivers in several ways:

  • Caregivers are encouraged to attend the various classes offered as part of the rehabilitation process. Importantly, while patients and caregivers both participate in stress management groups, they do so separately, giving caregivers a chance to talk about the stresses they’re experiencing without making the people they are caring for feel guilty about causing those stresses.
  • Help is offered for identifying and accessing resources that are available (see the Heart Institute’s new listing of Caregiver Resources). Members of the Rehabilitation team will advocate for caregivers, said Robbins, making sure they get the help they need. Whether it’s setting up medical appointments or working with the pharmacy, the team plays a facilitating role.
  • Caregivers also have access to all the members of the Cardiac Rehabilitation team for a friendly ear and someone to talk to. Robbins noted that team members spend a lot of time talking with caregivers who are sitting on the sidelines of the Heart Institute’s track facility while patients take exercise classes.
  • Caregivers can also call the Nurse Coordinators 24 hours a day to have their questions answered, or simply for emotional and practical support.

“The ability to talk to a nurse at any time is something people remark on,” said Brownrigg.

This fall, based on focus groups held to identify the needs of patients and caregivers, the Heart Institute will offer a couples-based intervention, called Healing Hearts Together. The new offering is an adaptation by Dr. Tulloch and colleagues of the Hold Me Tight program developed by Sue Johnson, PhD, a world-renowned couples therapist. Healing Hearts Together addresses the specific needs of cardiac patients and their partners. The goal is to strengthen a couple’s bonds so that they can communicate better and help meet each other’s needs. While it is a pilot project, Dr. Tulloch said the Institute plans to offer more such resources in the future.

“We want to prevent caregiver burnout,” said Brownrigg. “The reality is that heart disease is a chronic disease. This isn’t just a one-off. We want to support caregivers because they’re absolutely vital.”

Read the rest of the Caring for the Caregivers series: