LIMINAL TIME
A Chaplain friend of mine introduced me to the concept of Liminal Time, he described it as that time between soon and not yet.
In 2007 my wife Lee was diagnosed with a thing called "Pick's Disease" a rare form of Frontal Temporal Lobe Dementia. We were told that the disease progression took between six to eight years to begin to display the dementia. This dementia affects, balance, speech, and social skills. One doctor told me that instead of turning off the TV she might simply throw her shoe at the screen. It was at this time we began our Liminal Time.
During the early years I acquired a Doctor of Educational Ministry degree. My final project was to create a seminar for adult children caring for their parents and spouses caring for spouses. I read multiple books, researched numerous internet websites all to become enlightened on the process of caregiving. I researched dementia and how to deal with someone and care for someone with dementia. Also over the years I had dealt with my parent's dementia and my mother-in-law's dementia. In theory, at least, I was knowledgeable and well versed in the care of dementia patients. I was awarded a doctors degree based on this project.
In the 2011/12 time frame we began to see that as the disease progressed we would need additional help in caring for my wife. As a result we sold our home in Florida and moved back to Huntsville, AL as our children live in North Alabama. Lee's reasoning was that she wanted her grandkids to remember granny not the crazy lady. We returned to Huntsville in February 2013 and bought a small home in the cotton fields of northeast Huntsville. It is indeed a small home and we have had to divest ourselves of lots of "Stuff". Except books of course Lee will not part with books. Liminal Time.
It was in Huntsville that we began to deal more closely with liminal time. Lee's lack of balance was the first of the indicators that the "Pick's" was beginning to take effect. In January of 2015 we purchased a Chevy Tahoe, so as Lee phrased, we could drive our four grandkids around. The balance problems started to display as she began to have difficulty getting in and out of this large vehicle. After she had fallen twice onto the concrete floor of our garage we traded the Tahoe in for a smaller Chevy Malibu. However, even with this smaller vehicle we have purchased aids to help her get in and out of the vehicle. Liminal Time.
I have also seen a decline in her speech patterns and a slowness of gathering the right words. There has been a decline in social skills as she no longer sees it necessary to clean up after herself. Liminal Time.
We recently spent four days in San Antonio TX to celebrate her 70th birthday. San Antonio has a special place in both our hearts as we lived there for ten years during my military career. We still have lifelong friends and truly enjoyed visiting with friends and eating our way across the city. However, this probably was our last true family vacation. Liminal Time.
Although I have head knowledge of and have helped others deal with dementia in their families. I am having trouble remembering how to properly respond to my wife the dementia patient. I am supposed to know better but I am argumentative and bitter about what is happening to my wife of 45 years. Liminal Time.
Today June 18th I am taking a sanity day. I am sitting at an Alabama State Park watching the grass grow and woodpecker's doing their thing. I am also writing this epistle as I sit in liminal time. I am reflecting on what will my reaction be when I have a body that my wife no longer lives in? Frankly I am scared. As I look at the progression of this disease I see a long period of trial and tribulation. Most experts say that this disease will eventually mean that Lee will be in some sort of dementia long term care facility. This is an expensive proposition and will ultimately take all our assets to pay for the care. We have already told our kids that given this scenario there will be no inheritance. Frankly for all the family it isn't the cost of care or no inheritance, this is a lady we love and just can't imagine having a body that she doesn't live in anymore.
So as I sit here watching the grass grow I am in fear of the future. Although on paper I am supposed to know now to deal with a dementia patient. I haven't read anything yet to prepare me for dealing with my wife of 45 years, the dementia patient.
My chaplain friend also spoke of "hopeful hopelessness;" When your world is falling down around you and there appears to be no hope we still have the hope we have in Christ to help us deal with the trauma and turmoil of life. He will be an anchor when we are experiencing our worst scene scenario. Liminal Time.