A Path Called Alzheimer's

Preface -- Introducing the Path

The following narrative was compiled from my writings in the years 2012-2021, with a few remembrances from earlier years. At my daughter’s suggestion in 2012, I started making notes of the changes I saw in Wayne, thinking I’d then be better ready to describe them to a doctor, if the need ever arose. I also have inserted here my thoughts, questions, feelings and fears about those changes that I’d taken to the Lord in my prayer journal during those years. These are excerpts only, not the entire journal entries.

Prayer journaling was a practice of mine and Wayne’s long before the challenge of AD came into our life together. It was something that developed naturally for me. At first, I decided to make myself write something about the daily Scripture reading (we followed a schedule of reading through the Bible annually), for otherwise it could seem so familiar that I'd just read it and leave it. As that habit of writing a response developed, I found I was starting to address some of those thoughts to the Lord, discovering that writing was a comfortable vehicle for "talking with him."

I discovered it a good way to “cry out to the LORD…and pour out my complaint before him…” (Psalm 142:1-2); it was a way for me to “cast…anxieties on him…” (I Peter 5:7). This practice helped me to get at feelings and inner thoughts, to come to some understanding, to give them over to him for that day, to receive assurance and enabling to go into the day in trust that he would supply. I could be very honest, raw, weak (for no one else ever saw what I wrote), knowing I was heard and received and helped. Madeleine L'Engle, writing the Foreword to A Grief Observed by C. S. Lewis, says about journaling, "It is all right to wallow in one's journal; it is a way of getting rid of self-pity, and self-indulgence and self-centeredness. What we work out in our journals we don't take out on family and friends." (p. xiv) Some people, I think, saw me as a strong person; prayer journaling explains that. It was not my strength; it came from the Lord as I unveiled myself to him. This will be apparent in the following pages.

The practice was so entrenched in Wayne that he daily sat at his desk, Bible open, writing in his journal until he left for Memory Care. In fact, we sent a small desk, his chair, his Bible and journal with him there. The caregivers knew of its import to him and encouraged him to do it. But that move affected him deeply and he was no longer able to do it.

As we grew in the ability to connect with the Lord through the journaling, we both grew in the expectation of hearing back from him. This could come from a strong inner sense, an actual “word” from him that gave encouragement and building up (this type of thing came mostly to Wayne), or dreams (which often came to me). We learned to pay attention to what we were sensing and to dreams that we could easily remember. You will read of all of these in the following account.

You will also read of “Wayne’s devotional.” Many years ago, he began emailing his thoughts on a given Bible passage to our son, Jeff. Jeff would often send back what he was thinking of that same passage. In this way they would go through a book of the Bible for a month, then repeat it each month in that calendar year. After a while, Wayne decided to forward it to others as well, and that list grew. This practice was also very entrenched in Wayne and he continued trying to write something till just a few months before memory care. In the last years he knew he needed help with it and gave it to me each day to edit, at first, then to rewrite, trying to capture and convey his insight.

There is evidence in these pages of the fact that I did not understand everything happening in the moment, though I sometimes did after the fact. But some things I didn't understand until I was no longer in the midst of caretaking. Some insight is still coming to me.

I offer this account first with the hope that the reader will see the indignity pictured here as being from the disease and not the person; secondly, with the understanding that the aloneness described in it is inherent to an AD journey; and thirdly, with the hope that some in the Lord's church may come to know this journey better and determine to come alongside others walking this path called Alzheimer's.