By Dave Goldenberg, WSA Member  (Support Group Leader, King of Prussia, PA Support Group)

Respite time for a family caregiver is not a luxury, it is a necessity.

Elissa Lewin, founder of Nancy's House, which is a nonprofit organization dedicated to caring for caregivers, knows this from experience. Ten years ago, Elissa, who is a clinical psychotherapist, began caring for her 90-year-old father-in-law in her own home for five years. He required considerable care. In addition to suffering from Parkinson's disease, he had diabetes, congestive heart failure, and mild dementia. This was of course a source of significant stress in Elissa's life, compounded by the fact her sleep was compromised due to her father-in-law's constant wandering around at night.

Elissa had actually been involved in her mother-in-law's care a few years earlier. She believes the stress involved in this first instance of caregiving contributed to her chronic lymphocytic leukemia diagnosis shortly thereafter (which thankfully has been in remission). So Elissa knew from the outset of caring for her father-in-law that she needed to effectively manage her stress. Not only did she exercise regularly but she also treated herself to weekly massages, given by Nancy Brown, who was a massage therapist at the office of Elissa's chiropractor.

After her father-in-law passed away, Elissa began to research the effects of caregiving and soon discovered some disturbing facts. Mothers of chronically ill children, in one study, showed evidence of aging thirteen additional years. And because of the chronic nature of caregiving and the usually associated financial burdens, caregivers experience higher rates of heart disease, diabetes, high blood pressure, and immune system dysfunction.

In other words, providing TLC can eventually make you sick.

One of the most important measures a caregiver can take is to ensure he or she gets enough sleep (easier said than done as almost everyone of us well spouses knows!). This is crucial because adequate amounts of sleep enable the body to break down dangerously high levels of cortisol (the stress hormone linked with all the above conditions). With this in mind, Elissa created Nancy's House and special respite weekends for family caregivers. First and foremost, Elissa wants to make sure that caregivers get two solid nights of solid uninterrupted sack time.

The reason Elissa chose to call her organization Nancy's House, by the way, was to acknowledge a conversation she and Nancy Brown, the massage therapist, had about creating a place where caregivers could be cared for. The name is an homage and a personal thank you to Nancy.

Nancy's House is a young organization. And it's one of a kind. Recently, I was privileged to attend a special respite weekend catering to a small group of men who provide care for their partners who have MS. Elissa's goal is to provide these kinds of respites at least twice a year per group, and she hopes to be able to extend the length to three or even four nights. Another goal is to go national and hold these respites in different parts of the United States. The respites are geared toward various groups of caregivers. Recently there was a respite for women who care for partners with advanced ALS.

The respite I attended was the first one to be held at the ACE Conference Center, which is on the outskirts of Philadelphia. This facility was chosen so attendees would not have to share rooms or bathrooms. Yes, I felt spoiled!

And then there was the pampering! A skilled massage therapist gave me a thoroughly relaxing massage. For stress management and further relaxation, there were yoga and meditation sessions. There were opportunities to walk (my favorite exercise) and the meals were delicious (and no cooking or cleaning!). I even took advantage of a one-on-one therapy session with Elissa, who had utilized an interesting mode of therapy known as EMDR. We were all encouraged to unplug and turn our cell phones off (our spouses had the numbers of the conference center and Elissa's cell phone if they needed to reach us). Four other men attended and we shared our experiences and concerns. We also offered each other support and practical suggestions.

The cost to me for this entire weekend was fifty dollars. That is not a typo! Thanks to generous grants (including a challenge grant from the Green Tree Community Health Foundation), the cost to us caregivers is minimal. Additionally, the Delaware Valley chapter of the National MS Society covered the cost of caregiving attendants for my wife (48 hours of care at $22/hour adds up fast!)

I will not forget my special Nancy's House weekend. And I am already looking forward to my next one, which will hopefully take place in the fall. I am indebted to Elissa for providing this amazing service which truly nourishes the soul of a caregiver.

For more information on Nancy's House, visit their Web site: http://www.nancys-house.org/ . The phone number is 215-885-0753.