Learning, Evolving in Caregiver Role

"I shake hands for Woody," Kay will say if you meet her. Her husband Woody received a transplant in 2001. In her evolving role as his caregiver, Kay continues to take precautions on behalf of her husband to prevent infections.

As a mother of two, Kay was well-versed in caring for others, but she had never given an injection, cleaned a catheter or used a stethoscope. When she learned that Woody would need a transplant, and that she would assume the role of caregiver during his treatment and recovery, she remembers thinking, "This is not my education."

Woody's non-myeloablative (also called reduced intensity) transplant required fewer days in the hospital, and meant that Kay, as his caregiver, had even more responsibilities to ensure his well-being throughout the recovery process. Initially overwhelmed, she wasn't sure that she would be able to handle all that comes with caring for a transplant patient.

"Transplant centers provide excellent caregiver education," says Kay. Knowledge "empowers caregivers and helps create a sense of being in control of what is a new and potentially scary situation."

She learned by asking lots of questions and attending educational sessions provided by the transplant center. Information about transplant is also available through many patient education organizations. It may be helpful to prepare by becoming familiar with the steps of transplant, starting with entering the hospital, through receiving new cells and on to early days of recovery.

After transplant, a patient must take time to take let his or her body heal — restoring its strength and its weakened immune system. Precautions must be made to avoid infection. Caregivers like Kay must do most of the cooking, cleaning, shopping, pet care, yard work and other household tasks.

By learning what to expect, Kay felt more confident in being an effective caregiver. Shortly after Woody returned home, Kay was able to demonstrate this confidence. During this time, Woody occasionally had an irregular heartbeat. Until his doctors diagnosed that this was tied to recurring sinus infections, Kay was instructed on how to use a stethoscope to monitor her husband's heartbeat. She would often awake in the middle of the night to do so.

Caregivers also need to care for themselves, getting their own rest and focusing on their own needs to avoid burnout. Fortunately, Kay's son was able to visit from California, and her daughter was able to take three months off from graduate school to help care for her father - and give her mother much needed companionship and support. Kay says she and her daughter took many "therapeutic" shopping outings. "Taking care of myself and maintaining some normalcy had a measurable impact on helping me feel more 'like myself'," said Kay.

As a patient recovers a caregiver's role will change. Now four years post transplant, Woody is back to work and requires little from his caregiver. Kay still accompanies her husband to all his doctor appointments. And, in addition to shaking hands for her husband, Kay opens the door for Woody when they are out. "She has become quite the gentleman," Woody quips.

"After transplant, you define 'normal' very differently," Kay said with a smile.