Coming from the week of talks, interviews and book signing in Iowa, I was swept over
with the realization that the majority of us have been affected by dementia in one form or another at some point in our lives. And according to the statistics we have only seen the beginning of this disease.
I spoke to hospital staff who expressed appreciation at hearing from the caretaker’s point of view—I emphasized that caretakers need to be taken care of in so many ways, yet they get pushed into the background so often. Caretakers begin the grieving and mourning process as soon as their loved one becomes symptomatic but their grief cannot fully process into closure because their loved one has for all intents and purposes passed away, yet they remain very much alive. As Wayne Ewing so eloquently expresses in his book Tears In God’s Bottle: Reflections on Alzheimer’s Caregiving, the “exquisite well being” of his beloved wife was “lost in space and time, was both gone and still there; well yet very ill; saw yet had no vision; heard yet had little understanding.” He was grieving the very real loss of his wife, yet she was still there in a physical body. Her soul (mind, will and emotions) was gone; everything they shared as a couple—their entire history—was gone. The grief remains fragmented and unfinished, raw and open while the loved one remains alive. I spoke of the need for someone in the medical profession to sometimes turn to the caretaker and ask the simple question: “How are you doing?” and mean it. These professionals came to me later and said that had never occurred to them—their focus was always on the patient.
Caretakers suffer punishing guilt—“I am failing at caretaking; why can’t I do this? Why … Why… Why.” I wanted to let them know that the words they speak to a caretaker in the throes of grief and guilt are so very important—they need to know that they are doing well, they aren’t failing.
I spoke to caretakers who could only nod in affirmation throughout the talk, and then come to me at the end with a simple word, “My husband/wife/mother/father has dementia.” That is all they could say. And that is all I needed to know. The fellowship of suffering was joined together in that short statement. I knew, they knew. There was nothing to say, but vast depths of emotion passed between us, just a “knowing” that we understood and wept together. My word to them was “hope.” For caretakers begin to lose all hope that there is life after dementia. I was there to tell them that there is life after dementia and that God would bring beauty from these ashes as they poured out their lessons and experiences into the lives of others who were also suffering. That is their redemption and God always redeems beauty from ashes.
I spoke to a group of residents in a care home, all over 85 and many in their 90s. Lively, alert, beautiful people, all who had lost loved ones to dementia and when they related their experiences to me, they still wept. They still wept. But they were still able to laugh, joke, share, encourage others and this is what I saw with these dear souls. They had discovered that there is life after dementia and they were living it. They were living proof. I was living proof!
Most of all I was made aware that God intended to take this book that He had given me and move it out of the Christian realm, and into a much broader realm of medical health care professionals, caretakers, and possibly into care homes where patients, caretakers and family can pick it up and find the encouragement and hope they so desperately long for. I had mistakenly thought that only believers would want to read it because it is so filled with my walk with Jesus through a long and lonely process, but He was very determined to show me that it will also minister to those who need Him—who need Hope and a future. So, as I say with everything else that God wants to do in my life—Help Yourself to my life. Help Yourself to this book. You wrote it, You will bring out the plunder of the long dark night of the dementia experience and then You will offer it back as a burnt offering to bring glory to Yourself