Dementia Stories

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

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5 Responses to Dementia Stories

  1. Suzanne Holmstrom says:

    I was at your talk at the Cresco hospital. I bought your book but didn’t have time to wait for you to sign. I don’t expect you to remember, but I did want to tell you that I just finished reading it this morning. I thank you for it and all it has helped me with. I am going to give it to my mother (the main caregiver) tonight. I hope she gets some peace from. it. My father is the one with dementia and as much as I do not want him to go to a nursing home, I can see that my mother can not keep up with this life of taking care of him. All I can do now is pray for him. Thank you for your book.

    • Thank you for posting Suzanne. I can almost feel your terrible emotional pain through your post and my heart goes right up to the throne room of our Lord in prayer for you and your family. I do remember that you had to leave the talk early and my friend said that you bought the book but didn’t have time for it to be signed. Please write to me anytime. I will pray for you and your family. I know that the decision to place him in a care center has to be one of the hardest decisions you and your Mom will have to make, but as you read in my book, Jesus, our “Wonderful Counselor” (Isa. 9:6), is able to carry you as a Shepherd carries a sheep, right in the crook of His arm and into His peace throughout all of it. Please keep me posted.

  2. Greg says:

    What a great post Kathy! And what a blessing to find out how much this book will minister to unbelievers who need Christ as well.
    You know I frequently tell people (other christians) that when I talk to unbelievers I address them as if they already know Jesus, as if they are already believers.
    I feel that this intentional act awakens a dormant possibility of relationship with the living God.

    It slides right under their defensive radar, and makes them want to NOT deny that they also know God, thereby planting a seed in their secretly seeking hearts. In a public, bold conversation, many people will want to appropriate their acceptance from other individuals that they are not the outsider when it comes to a relationship or knowing of God.

    Oftentimes doing this intentional act creates one of those awkward conversational moments where people are internally processing their acceptance of their knowledge of Christ that they just professed publicly in a conversation with someone else.

    I think you are finding in your presentations to other caretakers that same deep desire to have Christ and the healing he brings. But this is a platform that brings them in droves to your ministry, because they are all deeply affected by this disease in some way.

    When you look at them and communicate without words, you have already ministered to their hearts through your book or through your presentation when you were speaking…and their hearts have been caressed, annointed with salve, and they feel the care from you that you did not seem to feel from anyone else during the hardest times.

    Thank you for sharing your heart and the details of your experience Kathy.

    I look forward to reading more.

    Greg Eddolls aka The Strong Watchman

  3. kathy says:

    Thanks Greg, this encourages me and affirms that the “waters” I was asked to pass through with John had a purpose greater than my finite mind was able to comprehend.

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