It all started when my fatherin- law came to live with us. Over the years, he had needed increasing support to continue living independently, until finally he was no longer able to do so. Although we thought we knew what to expect when we invited him to live in our home, the truth is that there were many subtle impacts we could not have anticipated that had profound effects. People compare bringing a parent into your home to having a child. In many ways, that is true. Count on having your sleep broken, going out to dinner with a spare set of clothes in case of “accidents”, having your own schedule secondary to the needs of another person. There are, however, some profound differences. Most significantly, while your children become more independent over time, your parents become less so. And the joy and support that people so readily give to new parents is just not there for “new caregivers”. In fact, for caregivers, it is just the opposite that happens.

It does not matter whether you are caring for your aging parent (or parent-in-law), your injured spouse, or your chronically ill child. As your own life becomes more focused on your loved one’s needs, much of the support for your own care and wellbeing dwindle. One acquaintance described how, as she took care of her husband in the terminal stages of cancer, all their friends would ask how he was doing, but nobody ever asked how she, the caregiver, was managing. It is an odd feeling of being simultaneously essential and invisible.

Two seminal events happened after my father-in-law moved in which led to the creation of Nancy’s House. First, as a step in my own stress management, I started getting a weekly massage. My first massage therapist, Nancy, had a son with autism. It was a conversation with her about “wouldn’t it be nice if there were a place where we could be taken care of the way we take care of the other people?” that planted the seed in my mind for a residential respite center.

Fast-forward five years to the Tuesday before Thanksgiving, and the event we had been anticipating for weeks happened – my father in- law passed away. When I awoke Wednesday morning, I realized I had just had my first solid night’s sleep in five years.

That experience merged with the seed that had been germinating. Now I had the time and knowledge to create a comprehensive respite center dedicated to the needs of family caregivers. My training as a psychologist taught me to “review the literature” before doing anything else, so I started looking into the research on respite care and caregivers’ needs. What I found confirmed my belief that caregiving is fast becoming a major public health concern.

Depending on whose statistics you read, there are between 22 and 44 million family caregivers in the United States today, and they are saving the American health care system and the taxpayers billions of dollars yearly. There is a price to be paid, however. Family caregivers have higher risks of developing depression, heart disease, diabetes, physical injury – even of premature death. While excellent at taking care of their loved ones, family caregivers are notoriously bad at taking care of themselves.

The most common complaints are of isolation and exhaustion. These, in turn, lead to physical and emotional stress that manifests at every level – from cellular (caregivers cells age at an accelerated rate) to systemic (a weakened immune system, increased risk of heart disease and other metabolic disorders) to social/emotional (social withdrawal, depression). A common approach to providing relief is respite.

The most popular form of respite is home care. Someone comes into your home to stay with your loved one for 3,4,8 hours. Then the caregiver is free to go to work, go to the dentist, meet with a teacher, do the marketing...in short, do all the things you need to do to keep your life from crumbling. Where are the relief and rest?

The answer is in Nancy’s House. Evolved from the experience of caregivers, Nancy’s House is a new concept in respite care. Shawn Talbott, in The Cortisol Connection, says “…as little as a night or two of good, sound, restful sleep may do more for …reducing your long-term risk for many chronic diseases than a whole lifetime of stress-management classes.” That is where Nancy’s House begins. The entire program begins with guests coming for two consecutive nights of undisturbed sleep, and everything else is built around that.

Because being a family caregiver often means that there is a reduced household income, Nancy’s House will pay for 36 hours of home care so that a caregiver can step out of that role and come to Nancy’s House. Building out from the two nights’ sleep, each element of the program is designed to address the isolation, exhaustion, and self-care needs of the caregiver. Support groups, both formal and informal, occur daily, along with speakers and classes to address common issues and concerns. Massage therapy and counseling will be available to relieve stress. Classes and a resource library will provide the information caregivers need for better self-care at home, and referral services may help caregivers discover support they may not have known was available. Built into the visit, along with all the above services, is the time to do nothing -- just sit and relax, read, chat, nap, whatever. When a guest leaves Nancy’s House, the connection continues via on-line and telephone support groups. Guests are welcome to return two more times a year. The fee being asked, including home care, meals, all services and classes, is $50.00 per visit.

All of the above is a plan, a vision, to address a known and growing need. You can be part of that vision! Nancy’s House is actively seeking board members, funding, and a B&B or hotel that will let us occupy their “down time” for a year or two. It is our goal to open our doors by January 2009.

You can help us achieve our goal; you can help Nancy’s House in “Caring for Caregivers.”

Contact Elissa at 215-885-0753 or elissa@nancys-house.org.