For the first time in about six years I scheduled a “date” with myself … no plans, no appointments, no errands, no networking events … nothing. When I was married, I scheduled a date day with myself once a month, just as I did with Lillian and my spouse. Thomas was not yet 1 year old so I had not begun date days with him yet. I haven’t done that since 2006 (scheduled a date with myself, that is … I have a date with Thomas and Lillian alone once a month).
You see, I’ve just recently realized what *respite means, the true meaning and it’s true purpose. Since 2006, I have used my time away from Lillian and Thomas to go to personal appointments, run errands, attend networking events and work. I really did not think of myself as a *caregiver and one who needed respite. I didn’t really know the definition of a caregiver or respite. (See below for a definition of “caregiver” and “respite”.)
In the last couple of months I decided I absolutely must have some time to myself … time to just BE. I finally scheduled someone to come stay with Lillian and Thomas on July 12, 2012 for 4 hours, not knowing how I would pay for it. But, I knew this had to be done for my own sake and for the sake of Thomas and Lillian. (***Update*** After I wrote this article, I found out, without my asking or saying anything, that grant money was going to be used to pay for my respite for this month. Hmmm … Coincidence??)
I have read, heard and believe that we each must have time to ourselves, caregivers or not. Time for doing what we like to do, want to do or time to do absolutely nothing at all … with no commitments. Taking respite allows us to refuel and refill our cups so that we can come back to our families and our obligations and serve to them from what overflows. Having this time infuses us with creativity, patience and resourcefulness. I understood the concept and thought I was doing good, giving myself 15 and 30 minutes of it before Thomas and Lillian wake up in the morning and after they go to bed.
Today, when I finally left the house, thirty minutes after the scheduled time, I still didn’t know what I was going to do. I knew I wanted to write … I have been craving to write …. articles, quotes, poems … whatever, my soul has just been screaming … “Write, Write, Write!!” But, when I left my stomach was screaming, “Feed me first before you write!”
I found myself at the Summit Sierra outdoor mall as I didn’t want to waste any of my 4 hours (now 3 and a half) driving somewhere. I then got extremely confused … where do I eat, I don’t know what to do. I posted on facebook asking local friends which of two restaurants I should eat at. I sat in the car and pretended like I was reading for about 30 minutes, all the while getting more and more confused … wondering what in the heck I was doing. I finally decided I would just go to a fast food restaurant. I pulled up to a handwritten sign that the debit card machine was not working and I didn’t have any cash on me. I couldn’t back up as someone was behind me and couldn’t go forward as people were waiting for their food. I was forced to wait, all the while wondering what the heck I was doing!! For me, this was a reflection of what was happening in my mind. When I was finally “free” from the drive through lane, I parked the car. What do I do? My intuition said to go back to the original restaurant I had chosen, so that’s what I did.
And you know what? I had one of the most blissful meals and experiences I have ever had! I was on the verge of tears, hoping the waiter didn’t come ask how I was doing while I had tears welled in my eyes. I was thinking, so this is what it’s like? I had forgotten …
I’ve heard that this is a common experience with caregivers … We have forgotten what it’s like to have time to just BE. The second we leave our loved one we become confused and are not sure what to do with ourselves. I didn’t think it would be like that for me … I even wrote about giving yourself quiet time in my book, “D iz for Different”, in Chapter Q: Q is for Quiet … Now, I understand …
…. And watch out because now my passion is welling to the point of overflowing to educate and help other Moms/Parents/Caregivers of special needs kids understand too …. to include a new project brewing over at the Turning Views Foundation and Different iz Good. Oh and you better believe that scheduling respite or a date day with myself or whatever you want to call it will become a permanent part of my life!
For those of you attending 19th Annual Chromosome 18 Conference, this is what I’ll be speaking about, Taking Time for You, in addition to three 15 minute Proloquo2Go sessions.
Stay tuned as I’ll be writing a post detailing a bit more statistics and facts about caregiving and respite.
*Who are Caregivers?
Caregivers have often been called the backbone of America’s long-term care system. On a daily basis, family caregivers assist relatives and loved ones of all ages with routine daily tasks like bathing and homemaking to carrying out more complex health-related interventions like medication adminstration and wound care and managing complex needs of children and adults with disabilities.
In 2009, it was estimated that 29% of the population, or nearly 67.5 million people, provided some type of care to children and adults of any age, including the elderly, with special needs. These caregivers provided nearly 20 hours of care per week and often do so at the risk of great phsyical, emotional, and financial hardship. (Source: Caregiving in the U.S.: 2009. National Alliance for Caregiving/AARP, November 2009. http://www.caregiving.org)
*What is respite?
Respite is a key component of family support and home and community-based long-term services and supports. Respite services strengthen family systems while protecting the health and well being of both caregivers and care recipients. The Lifespan Respite Care Act of 2006 defines respite care as “planned or emergency care provided to a child or adult with special need in order to provide temporary relief to the family caregiver of that child or adult.” Respite services may be provided in a variety of settings, including the home, adult day care centers, or residential care facilities. (Source: Fact Sheet from The Lifespan Respite Care Program)