God and Alzheimer's - "Forgetting Whose We Are"
- Published on Tuesday, 18 August 2009 20:04
- Written by Stanton O. Berg
© - 2009 – Stanton O. Berg
The August 2009 issue of the U.S. Catholic magazine contained a short article that was erroneous about the impact of Alzheimer's on the victims of this terrible disease and needed a reply. Below is my response to this article. I feel that the misconceptions demonstrated in this article needed correction. I suspect that these misconceptions may be widespread and certainly not confined to the Catholic faith.
"10 August 2009
I read with a feeling of incredibility, unbelief and finally anger, the one page article in the August 2009 issue of the US Catholic entitled: "Not Even Alzheimer's Can erase God". Both my mother and my wife died from the complications of this terrible disease. 200 people die every day from Alzheimer's. My remaining life is devoted to honoring my mother Ellen and my wife June's memory and acting as an advocate for Alzheimer's research, funding and proper care practices. I spent almost 12 years caring for my wife. Over 8 years in our home and over three years in an Alzheimer's facility where I spent 30+ hours weekly assisting with her care. I observed many other victims of this disease in early, middle and late or final stages. I have attended many religious services for the residents.
The article is grossly misleading, raises false hopes and to that extent, it is very cruel. The idea that Alzheimer's cannot erase God in the Alzheimer's victim mind is simply not true. The general overall theme of the statement is both true and false. To the extent that God will never forget them, it is true - however to the extent that the Alzheimer's victim will never forget God, it is simply not reality and false. It is a product of an overly active imagination and wishful thinking.
Romans 8: 38-39t tells us: "For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present nor things to come, ..Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Jesus our Lord."
This tells us in effect that God will remember us even when we no longer remember God. This assurance is very important for the soul of the Alzheimer's victim in late stages because they will no longer remember God.
The author of the article, Mr. Feuerherd obviously has only a superficial knowledge of the subject of Alzheimer's. His hypotheses is wishful thinking and his evidence is at best anecdotal - the least reliable of all evidence.
I suggest he review the only significant in depth work in this field: "Forgetting Whose We Are - Alzheimer's Disease and the Love of God" by David Keck - (Abingdon Press, 255 pages.)
Note: This textbook's in depth treatment of this subject is the best I have ever seen...for that reason, I made a gift of this book to each of the three Pastors at our Redeemer Lutheran Church for their future guidance...it was presented as a gift from June with her picture. This 6x9 book is completely indexed, has a bibliography and many pages of additional notes and references. The forward by George Lindbeck, Professor at Yale University Divinity School suggests a great need for this book: Alzheimer's as a "Theological Disease", its neglect by Theologians is puzzling."...memory is crucial both to the life of the individual and the life of a church...when one beholds the frightened and confused face of an Alzheimer's patient, it should be apparent that profound religious questions are at stake when memory itself dissolves."
Alzheimer's disease is a slow death of the brain. The brain cells (Neurons) are dying and by the time the victim has progressed deeply into the late stages, the brain is only 2/3rds of its normal size. As the brain cells and the brain dies, the brain being the body's control center, begins to shut down the various body functions. The late stage victim of Alzheimer's, in most cases - cannot speak or understand language, cannot read or write, cannot recognize anyone including themselves in the mirror, cannot repeat words or actions, they may be unable to feed themselves, chew or swallow, they may have seizures, usually can no longer walk, may be incontinent, they demonstrate a complete withdrawal or apathy, they have an inability to survive without total care.
I can picture vividly the day early in June's Alzheimer's journey as we sat in the offices of the Mayo Clinic's Alzheimer's Research Center. June and I were shown a scan of June's brain that already revealed that the portion of her brain responsible for her short term memory had disappeared. The long term memory portion would be the next to go. I also remember during June's last two years, she did not talk and sat with her eyes closed most of the day, shutting out an alien world she did not know or understand. Julie, one of our daughters in a period of her grief said she almost wished her Mom had cancer so we could at least talk with her and tell her how much we loved her.
While the article may be said to be of help in bringing attention to this dread disease, it also tends to be a minimalism of the horror of this disease. To that end it does a disservice by suggesting that the disease is really not as bad as most people think. While much of the article has application to the Alzheimer's victims that are in the early and middle stages, it misses the mark completely when it comes to the late and final stages. Some Alzheimer's victims die of complications before they have reached the final stages of the disease progression, thereby giving the false impression that late stage victims can still have an appreciation and some understanding of their Religion and their God. Overall, It gives the reader an almost total misconception.
Comments found in the article like: "patients will sometimes break out in a spontaneous recitation of the Rosary", or "A patient responded quickly" or "She found herself more willing to listen to her mother's stories" or "Response to religious stories was as on target as it would be from people without Alzheimer's". Such comments indicate that none of these individuals have or had reached the late stages of the disease...These are all normal experiences of the Alzheimer's victims' who are in the early and middle stages of this disease. It is never an example of the late stages.
The article leaves the reader with the impression that Alzheimer's is just a memory malfunction and if the caregivers are patient, helpful and understanding, all will fade happily into the sunset.
The article ends with the statements: "their religious sense remains alive...The spiritual life is growing." This I am sorry to say, is pure fiction. Nothing is further from the truth. The article leaves me with a feeling of frustration, sadness and great anger over the ignorance and rampant nonsense displayed in the article.
No one who has ever traveled into the shadows of Alzheimer's has ever returned. No medical or miracle cures have ever been recorded.
Stanton O. Berg"
Note: It should be made clear that I do not endorse what has been described as one of the prominent views of the mind status of the late stages of Alzheimer’s dementia in that the “mind is absent and the body an empty shell.” or that Alzheimer’s is an “apparent disintegration of the human being.” My position is that no matter how the personality, the mind, the mentality and the intellect of the Alzheimer’s victim is changed by the disease, the “Soul” of the victim/believer remains until the body dies at which time the “Soul” then leaves the body and is ushered into a heavenly realm to meet God…in a way not understood by man’s’ intellect is a molding and intertwining of the “Soul” and the “Holy Spirit”….God would be true to his promise as reflected in the Bible and found in:
Romans 8: 38-39…"For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present nor things to come, ..Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Jesus our Lord."
(Candid Photo above of June and Stan by Jim Gehrz at the Benedictine on 10/31/2007)
This little cross was June's for the year's 2007-2008. June was deep in the shadows of Alzheimer's and rarely opened her eyes or ever responded. The little wooden cross was hand made and was obtained for June by Chaplain Fran O'Connor. (Fran is the Chaplain at the Benedictine "Holy Spirit" Chapel.) June held the cross tightly through out the day as she would all or any objects placed in her hand, giving it up only when put to bed for the night. It was a replacement for the gold cross pendant and necklace (stolen) that June wore for most of her life. June was always proud of being a Christian. I know that June would have been proud to know that she was holding God's cross. The little wooden cross now remains with June at Lakewood along with a replacement for the stolen gold cross pendant and necklace.
Update: The October 2009 issue of the U.S. Catholic Magazine contained a very condensed version of the above letter in their letters to the editor section called: "You May Be Right." The caption above the letter has the title "False Hope". While I would thank the U.S. Catholic editors for printing what they did of my letter, I am disappointed at the brevity and am not sure the message I wanted to send came through very clearly. Below is the total printed version of my letter -
I read with a feeling of incredibility, unbelief, and finally anger "Not even Alzheimer's can erase God" (August).
Both my mother and my wife died from the complications of this terrible disease. The idea that Alzheimer's cannot erase God in the Alzheimer's victim mind is simply not true, though God will never forget them, of course.
Comments like "Patients will sometimes break out in a spontaneous recitation of the rosary" or "A patient responded quickly" or "She found herself more willing to listen to her mother's stories" indicate that none of these individuals had reached the late stages of the disease. These are all normal experiences of the Alzheimer's victims who are in the early and middle stages.
The article leaves the reader with the impression that Alzheimer's is just a memory malfunction, and if the caregivers are patient, helpful and understanding, all will fade happily into the sunset.
The article ends with the statement: "Their religious sense remains alive. The spiritual life is growing." This, I am sorry to say is pure fiction."
Stanton O. Berg
© - 2009 – Stanton O. Berg
Editorial Note: This poem by Norman Mc Namara is a poet, writer and a friend living in the English city of Torbay, Devon in the UK. Norm is explaining to God that he does not always remember. Norm is a victim of the dementia causing disease called Lewy Body, the second most prevalent of the dementia causing diseases next to Alzheimer’s. Norm is a tireless crusader and advocate for awareness and finding a cure for Alzheimer’s, Lewy Body and the other major dementia causing diseases.. Norms is a member of the newly formed “Torbay Dementia Action Alliance” in his hometown of Torbay. Their goal is to make Torbay the first "Dementia Friendly" city in the world! Norm has also authored three books that describe his struggle with the disease Lewy Body. All three are on Kindle.
Norm at the time of the composition of this stunningly beautiful poem of faith, may be in the later part of the early stages of his journey into the shadows of this terrible disease. This poem is exhibit one of God working to bring good out of bad and the darkness of such mind robbing diseases. Much as June did when she was still with us and struggling against the bonds of Alzheimer’s, Norm is struggling to maintain a prayer link with God as long as possible. It is up to all of us to continue such prayers with them and later in their behalf, when the disease finally takes control and they no longer can!
I have noted that Lewy-Body type dementia sometimes retains some long term memory. I recall that my good friend Al Bangert who died recently of the Lewy Body type dementia, knew me to the very end and also recited the "Lord's Prayer" on his final day before passing. When Norm reaches late stages, he may or may not remember or have recollection of his prayer days! Lewy Body type dementia to that extent has less effect on the memory then does the Alzheimer's type dementia in which one loses all long term and short term memory in late stages!
“A Prayer for Dementia”
Norman Mc Namara
“Oh dear Lord, hear my prayer.
And show me that you really care
Trouble is I can't remember,
All my prayers for you to tender,
Will this matter, on the day,
When we meet, what will you say?
If I didn't have dementia
I would recall my holy Venture,
If I don't pray, from time to time,
Remember that my minds not mine,
Please forgive me, as you know,
No matter what, I love you so.”
(Used with Permission - 3/16/2012)
Dave Sandum - Prescott, Wisconsin - (10 March 2013): "Hard read - but beautiful."
Erma Yates - Prior Lake, Minnesota - (12 March 2013): "You do so bring tears of joy to my old feeble eyes, Stan! You are elevated to a higher level of consciousness of God and Spirit. Reading Romans 8:13-39, I shout for joy that you have reminded me of this promise! I had almost forgotten it...God in you makes me feel new and hopeful again!...I know for a certainty your message was for me on this day at this time."
For the companion essay to this one, see "God's Will and Alzheimer's". That essay discusses what part God plays in how one becomes a victim of Alzheimer's:
For another related essay that discusses the frequently voiced Caregiver complaint: "Where is God in this Alzheimer's World? ", click on the below link:
June first noticed a problem with her short term memory during 1997. Short term memory loss is a hallmark first symptom of Alzheimer's. In January of 1998, June was diagnosed by the University of Minnesota as being in the early stages of Alzheimer's. June's long journey into the shadows of this terrible disease ended after almost 12 years when she passed away on 23 October 2008 from Aspiration Pneumonia, a common complication of Alzheimer's. June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website under the "In Memoriam" label - or simply Click on this link: