I am a licensed psychologist who has been a caregiver and taken that experience
in a whole new direction. In 2000, my 90 year old father-in-law moved into our home with me, my husband, and our two children. He had Parkinson’s Disease, congestive heart failure, diabetes, had survived several cancers, and had just enough dementia to keep life interesting. We had already done everything we could to support him in his own home, but it became evident that it was no longer possible.
So, I did what most caregivers do. I left the group practice where I was an adjunct therapist (The Council for Relationships), I cut my private practice down to quarter time, and I became Abe’s primary caregiver. At this time, I was also intensively involved in our son’s education, as he has learning challenges, and my own parents were in their 80’s and I spent a day a week with them.
I will skip some of the stories here, but take you ahead in time. Abe died at home the Tuesday before Thanksgiving, 2004, 6 weeks shy of being with us for five years. When I woke up Wednesday morning, I realized I had just had my first solid night’s sleep in almost five years, and I had not even realized how exhausted I was or how disturbed my sleep had been.
Being a psychologist, I went to the literature to see what was known about the impact of caregiving and what was being done for caregivers. There is a great deal of knowledge available, both in professional journals and lay media, and almost every article talks about the detrimental effects of caregiving and that “caregivers need to take care of themselves.” But the other thing I found was that, unless one happened to be a caregiver with a great deal of money, there was not much available to help caregivers take care of themselves.
That was when I founded Nancy’s House, a non-profit comprehensive respite program specifically designed to meet the needs of caregivers, give them the rest they need and help them learn to take better care of themselves while caring for others, Nancy’s House is the only program in the country doing this right now. Because caregivers are financially stressed, in addition to emotionally and physically, we ask only $50 for a 3-day/2-night respite retreat. We have been running retreat programs since June, 2009, and have partnered with the MS Society, the ALS Association, and the Well-Spouse Association. We run retreats as often, and as quickly, as we can raise the money for them.
We had a retreat just last week in South Jersey. One of our guests was struggling to come to terms with the fact that she needed to place her husband, who has ALS, in hospice. Two others were the mother and aunt of a 37 year old man who had a traumatic brain injury as a result of a motor cycle accident. They were two years post-rehab, and felt there was no where to turn to gain information or support. Their rehab center had not given them any information or guidance, except to say, “He’s not who he used to be.” How were they to make sense of that? Another guest, whose husband has MS, pointed out to the group that Nancy’s House exists because I have chosen to live with my caregiving experience and create something from it, rather than move on and leave it behind, and she felt that took courage.
I had never thought of it that way before; I prefer to see it as experiencing a need and seeking to fill the void. If this story is compelling for you, I would be honored to be part of your project.
Founder and Executive Director
Nancy’s House Respite for Family Caregivers