In First Person

Young woman's hand holding the hand of an elder woman

“In First Person” is a new series that features the voices of patients, caregivers, providers and others who have a health quality story to tell.

By Judy Peraino

Caring for a loved one with advanced heart disease has been one of the biggest challenges in my life.  My mother spent the last couple of years checking in and out of hospitals, and as her primary caregiver, I was always at her bedside.  Every hospitalization took a toll on both of us.  Even with the help of family and friends, it was often overwhelming. 

As you can imagine, caring for my mother along with managing a career and taking care of our home left little time for a social life outside of my family and closest circle of friends.  I thought I would never get married… I just didn’t think I had the time to devote to a relationship.  Against all odds, I met John.  Having cared for his first wife who suffered from muscular dystrophy, John understood what it was like to be a caregiver. 

As we were planning our wedding, my mother’s condition started to deteriorate, and I knew that I could no longer take care of her by myself.  My mother’s cardiologist, Dr. Donald Haas, put us in touch with Compassionate Care Hospice in Westampton, N.J.  He is the medical director for their “Cardiac Connections” program, which is designed specifically to improve the quality of life for patients with advanced heart disease and to relieve the stress of their caregivers.  My mother and I both have a lot of faith in Dr. Haas.  He is so dedicated to her care and well-being that shortly after he began treating my mother, he gave me his cell phone number so I could reach him if and when I needed to. 

A nurse practitioner came to our house to explain the program.  It sounded exactly like what we needed.  A week after we joined the program, I knew we had made the right decision.  At Compassionate Care Hospice, we’ve met the most caring and thoughtful caregivers who continuously go above and beyond their duties to accommodate my mother’s personal and medical needs.

We work with trained nurses and nurse practitioners who visit us at home twice a week and provide high-quality care. They help my mother with her medication regimen and promptly respond to any symptoms of congestive heart failure; this lets us manage her condition at home and avoid hospitalization.  The program provides an aide who visits my mother five days a week for two hours a day to help with her personal needs.  My mother is also visited regularly by a social worker, and we have met with the program’s nutritionist to review my mother’s dietary needs. 

Everyone we’ve worked with has demonstrated incredible dedication to delivering the best possible care for my mother and making her heart condition manageable. On my wedding day, the same nurse practitioner who registered us for the program accompanied my mother to the ceremony and reception.  When my mother got tired, she took her home and stayed with her until we returned. This was the best wedding gift I received and one of the many examples of the hospice team’s wholehearted dedication to our family.

Perhaps the most valuable benefit that the hospice team has provided is its reduction in the number of hospitalizations and difficult care transitions necessary for my mother. Since joining the program, my mother hasn’t needed to visit the emergency room or be hospitalized. The hospice team has made themselves available 24/7 and has never failed to provide us with excellent medical care and invaluable emotional support.

Now, my mother and I can spend quality time together and share life’s precious moments in our own home.

Compassionate Care Hospice launched the “Cardiac Connections” program as a care model that meets the unique needs of patients with advanced cardiac disease and congestive heart failure. The program has achieved remarkable reductions in heart failure-related hospitalizations and emergency department visits. The hospice’s approach incorporates therapeutic and pharmacologic treatments focused on reducing symptoms of congestive heart failure. The program’s unique protocol and patient-centric approach have resulted in high satisfaction levels among patients and their families. For more information, visit http://www.cchnet.net/services/cardiac-connections.shtml

Judy and her mother are just two of the thousands of patients who have benefited from the Care Transitions Project. Fourteen QIOs are actively engaged in the project to improve coordination of care as patients move from one care setting to another. This story unfolded as HQSI, the QIO for N.J., partnered with Compassionate Care Hospice in the N.J. Care Transitions Project.

Home Hospice Care That Makes the Best of Living for Patients and Caregivers
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