Caregiver Lifeline Program
Gift of Life Family House Caregiver Lifeline Program provides services specifically tailored to the needs of organ transplant patients, family members and caregivers inside and outside the walls of the Family House. Our program integrates in-person, email-based, phone, and online support services, educational resources, and community-based outreach activities in the Gift of Life service area. Please consult our Resource Handbook as a starting point for families. If you don't find the resources you are looking for through the Caregiver Lifeline Program website, it does not mean we can't help, please email us at CaregiverLifeline@GiftofLifeFamilyHouse.org.
Articles exploring different aspects of the transplant process (emotional, physical, financial, etc.) and how a caregiver or family may be impacted. You may wish to start with Transplant Stages for Caregivers, our most popular page. You may also wish to visit our Past Newsletter Articles for caregivers.
- Article of the Month: Keeping Your Relationship with the Patient Healthy.
- Resource of the Month: HelpHOPELive helps patients and families pay medical bills and access treatments by helping them organize tax-deductible fundraising efforts in their communities.
Links to major organizations that provide services or resources for caregivers. Please consult our Financial Resource Handbook as a starting point for families. You may also wish to check out the Family Caregiver Alliance which supports and sustains the important work of families nationwide caring for loved ones with chronic, disabling health conditions.
Submit your story or read other caregivers' stories.
The Critical Role of Caregivers
In 2009 the National Alliance for Caregivers (NAC) estimated that a total of 65.7 million people in the United States were unpaid caregivers to either an adult or child.
Caregivers are shown to be predominantly female and an average of 48 years of age. Caregivers tend to be in their role for an average of 4.6 years, spending about 20 hours a week providing care.
Gail Sheehy, author of "Passages" and "The Silent Passages" writes:
" Like most new caregivers upon hearing the news of the diagnosis of a loved one's critical illness, I thought the crisis would resolve itself in six months - a year at the most - and then our lives would go back to normal. --- That was 15 years ago.
Within the first few days of sharing the news with stunned family members and friends, googling disease sites, tracking down doctors, comparing hospitals and growing dizzy from conflicting opinions, it began to dawn on me that my life had radically changed. I had a new job: "family caregiver". It's a job nobody applies for."
The Effects of Caregiving
Department of Health and Human Services found that caregivers were 2 times more likely to suffer from depression than non-caregivers
It can be estimated, according to the NAC, that 3 in 10 caregivers feel emotionally stressed and burdened due to their caregiving responsibilities.
Caregivers often neglect their own physical and mental well-being to support the needs of the "patient" or the rest of the family.
- The NAC also found in their 2009 survey that approximately 17 percent found their health had actually gotten worse as a result of caregiving.
"To this day, I can remember how alone I felt. I had to keep everything to myself...and manage every detail. I couldn't tell my wife that I was afraid I might lose her; I had to be strong for our three young children and her parents."
You are Not Alone...
Over 6,000 individuals are currently listed on our regional waiting list for a life-saving organ donation. Each year, thousands of patients - both children and adults - and their families and caregivers, travel to Philadelphia for diagnosis, treatment and care at one of the region's eight transplant centers. And while there has been tremendous growth and increase success in transplantation, for many transplant patients and their family members, even the good news of a life-saving organ match brings anxieties. Transplant candidates often have been disabled for years, with impaired earning abilities. A significant percentage of patients travel more than 50 miles to receive treatments so their joy at the prospect of receiving a compatible organ is tempered by the reality of extended hospital visits for the patient and significant out-of-pocket expenses for their family members. Following transplantation, organ recipients must return repeatedly for follow-up care, as often as 50 times in the first two years.
Please email CaregiverLifeline@GiftofLifeFamilyHouse.org with questions or comments.
Organ Transplant Resources: Map, Hospitals, Groups & Trials
Identify regional hospitals with organ transplant programs and support groups for transplant recipients and their families.