Caregiver LifeLine Services

Our mission goes well beyond simply providing lodging. We are committed to creating a comprehensive program to provide lodging when needed but also to focus on supporting the "family" and providing critical support and information for the caregivers and family members, as well as our transplant patients throughout our service area.

The Critical Role of Caregivers

Today, there is an unpaid army of 44.5 million Americans who take care of adults. Today's "typical" caregiver in the United States is a 46 year-old woman who holds down a paid job and spends 20 hours a week providing care for a sick parent, grandparent, spouse or child.

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."

And if that wasn't bad enough, research confirms that being a caregiver can be dangerous to your health!

• 40-70 percent of caregivers have significant symptoms of depression.
• Caregivers often neglect their own physical and mental well being to support the needs of the "patient" or the rest of the family.

"As a pastor, I've buried many caregivers before their recipients," says Greg Johnson, the chair of the New York City Family Caregivers Coalition.

And at the heart of the physical and psychological stress are the real financial challenges caregivers face. The financial toll can be enormous between what isn't covered by the patient's insurance, Medicare or Medicaid, coupled with the potential sharp drop in a caregivers' salary, many sacrificing an average of $500,000 in total income to be able to support the patient.

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.

Help is on the Way...

And while transplant patients receive exemplary care at area transplant centers, their family members are left to fend for themselves, often for weeks or months at a time, for hotel lodging, parking and transportation costs, meals - and information. Despite the fact that thousands of patients and their family members come to this city for diagnosis, treatment and care at one of the eight area transplant centers, there are no resources or services tailored to support family members and caregivers of transplant candidates and recipients.

Engaged and informed family members and caregivers are a critical factor to ensuring a successful outcome for the transplant patient. Caregivers need to have complete and accurate information available to them to make sound decisions on behalf of the patient and their families. They cannot make decisions in a vacuum and they need to know that they are NOT ALONE as they shoulder enormous financial and emotional burdens.

An Answer to Your Question...

The Caregiver Lifeline Program has evolved as a result of hundreds of conversations with transplant family members and caregiver who are searching for ANSWERS to non-clinical questions, such as:

• How do I untangle the confusing hospital bills?
• How do I advocate for myself? How do I advocate for the patient?
• How will I know what to expect after my loved one's transplant?
• How can I help (the patient) and myself maintain a healthy diet?
• How can I help (the patient) with their complaince with meds? Diet?

Our Caregiver "Lifeline" Services - Provided throughout our Service Area

Gift of Life Famiy House Caregiver Lifeline Program will help families locally and across our regions by providing them with online resources and free access to a variety of services tailored for their needs. Connecting family members with Caregiver Lifeline volunteer counselors, support groups and one-on-one mentors will create a network of support and information and will significantly reduce isolation for the family members.

Benefits offered through Caregiver Lifeline Program:

• Caregiver "Lifeline" Educational Resources tailored to assist with transplant-specific questions re: insurance, stress management, medication information, etc.
• Mentor System created to match pre-transplant with post-transplant buddy for family members and caregivers
• Monthly Caregiver Workshops in Philadelphia and across satellite area
• CaringBridge online journal and communication resources
• Discounts on pharmacy/medications through TrustScripts program
• Donated Goods and Services to support the family, i.e., snacks, food, bus tokens, long distance calling cards, laundry detergent, etc.