Rev. Paul Kapp, Ph.D., on God and Alzheimer’s

"When the mind is 'out'...where is God?"

With this deep theological question, The Rev. Paul Kapp and I have been corresponding via e-mail for the past two years. It started when Paul responded to me when PlainViews found its way into his e-mailbox. Paul is a retired Methodist Minister and CPE Supervisor who, when he first wrote to me, was in the second year of living his life with his diagnosis of Alzheimer’s. He is now in his 80’s and still has the ability to “converse” with me via e-mail, almost four years into his diagnosis.

When Paul first wrote to me he said that God had been with him all of his life and he could not imagine God not being present with him when his “mind is out.” I decided to pursue that with him. I asked him to write to me whenever he thought about it. Some e-mails went on at length and took some deciphering. Others were crystal-clear. Our dialogue has been a rich theological one with Paul sending me incredible insights about his belief that God is still present, even with those who have Alzheimer’s. Paul and I want to share parts of our dialogue with you. This article is longer than most. We hope that you will find the length acceptable as you read about Paul’s insights and struggles and joys. We did not want to edit out too much so that you might better understand where God is for Paul and how important it is for Chaplains to be present for those with Alzheimer’s. We hope that through Paul’s insights, you will find new ways to be present with those who have Alzheimer’s and with their families.

The Rev. Paul Kapp and Martha Jacobs, Managing Editor, PlainViews

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Now, my experience with Alzheimer’s – so far attendance at worship is a must for me, and I seem to be able to respond to the order of worship, the sermon, prayer, scripture, and friendly relationships with other folks. ////

If one loses mental levels, “Where is God?” is the question I wrestle with. I argue with some of you clerics, God is in the space between us, but when my Alzheimer’s comes to fruition, then I would not be saying that….and the “contact between me and God… prayer, etc., well what now? I’m sure that there must be some astute theologians who may have written about this. ////I'm "in process" in reference to Alz. My intent - I love to write about my Theological Aspects of Alz. Sort of a "Mr. Alz Goes to Church" .. Issue is, when the brain is empty via Alz, where's God for an active believer do then?
In CPE I always believed God was in the space between the chaplain/patient .. even though the patient did not get beyond the "relationship" with me, as chaplain ..held worship services, the patients sang, bowed their heads for prayer, .. sing the songs .. patients at Osawatomie would carry a Bible, prayer, sing, and worship .. I'd say that these objects connected with some memories .. not yet destroyed by psychosis.
Memory - my years of OSH .. patients had 'understandable' ways to connect to another person .. verbal ? ...not always .. make sense .. some times..they knew it was Tuesday because we had a ward worship service before dinner ..Now, my experience with Alzheimer’s –so far attendance at worship is a must for me, and I seem to be able to respond to the order of worship, the sermon, prayer, scripture, and friendly relationships with other folks. ////

If one loses mental levels, “Where is God?”is the question I wrestle with. I argue with some of you clerics, God is in the space between us, but when my Alzheimer’s comes to fruition, then I would not be saying that….and the “contact between me and God…prayer, etc., well what now? I’m sure that there must be some astute theologians who may have written about this. ////

I'm struggling with the theological dimension of dementia. I'm looking for some information about theological notions about the presence of God in one's thought, mind, spirituality... when the brain no longer functions. Obviously, I would expect my pastor to visit with me when I'm "out of it" but I also expect I'll be in lalaland when my pastor visits me... yep and I'll receive the communion, but will also be wondering, what was that? ////

My notions about Alz and Theology are in process. I've observed other folk in that later stage. The mind is simply non-functional. I'm not there... yet... so I've got some time for research. I'll send ideas as they blossom. ////

I'm looking for some article or published material RE: the "Theological Dimensions of Dementia" aspect when one has Alzheimer's. I would like to write something about the "theological" aspects of the Alz situation. I understand Alzheimer's pretty much clears the shelf called memory. Wonder if religion goes out with the dust. God in my mind? BUT, I don't have a "mind" at the end of the "parade" or does one still hear the band? Well, I'm not "there" YET, so I've time on my side to get some ideas on paper. ////

Good Morning Martha! Thanks for your note. I am writing within a beautiful "Frame" outside. Blue sky, sunshine, and clouds, only an artist recommended it. Cool (I mean the weather).
And this framework will influence some ideas, like seeds, will grow to flowers of poetry. An effort to frame my history in such a way that some "artistry" might be obvious. At one time I did some "oils" with the help of a real artist. He and I were pastors at small Methodist churches a few miles from each other. Those were the days in Kansas! I trust you will find your day a reward for your sensitivity and kindness. ////

So, "Theologian, where is God for the Alzheimer patient?" A rather dizzy way to write a book! So far, my mind is "intact," so why not be a "dizzy Alz"! The situation is most interesting! No one knows why Alz. What to do with Alz. No medication that "cures" Alz, so far. So, take the meds, dream a book, stretch ideas, and keep busy feeding my squirrels off the back porch. ////

I think the thrust of a paper might be, we have little control of memory. Psycho- theological issues. If you want to get a bit close to this idea, then we can say some memories are life-giving! Balances out! And it takes a lot of plain guts to be gifted with forgiveness. ////

I'm still doing some visits with family members. California and Florida. My Alz seems to respond to my Dx from my Physician. Hopefully I can get into the prep a paper about "Aspects of Alzheimer's - Theology" or something like that.

I've a lot of meds that seem to keep me stable. So time is mine, so far. Although, I do find myself timely searching for the "right" word in my talking/writing.If you have some ideas that might steer my paper toward the readers of PlainViews -- I must say my Alz has stayed as I reached my 79th so I want to "get with it" for a sketch for PlainViews.////

Ok, I'm into the "challenge." I'll send you a "rough outline." I attend a Alz meeting bi-monthly, and I have realized that my "intrusion" of Alz is not as serious as some other Alz patients I attend with at the Alz group therapy at our organization here in KCMo... so far.////

My Alzheimer's seems to "creep" to keep me down. So I'm "set" to get my contribution for readers who want a theological view of Alzheimer's. ////

Yep! I'm still in the "stall" getting my oats (ideas) ... for my thoughts on Alz that will "talk" to those who have Alz and their friends/family. The task as I see it... is the Alzheimer's patient is expected to lose the mind, though ... not happened to me yet ...I'm still working to get "it" on paper Another issue is also how can we speak to the family members who care for the patient ... I'm a former hospital chaplain... so I'm still working from experience that can be put on words... ////

Martha I think Dr. Alzheimer, a German physician scientist, (1902) discovered the source of what is now Alzheimer's disease. A brain shift causes a loss of memory. And so many things hinge on memory.

For me I've experienced such... my address, telephone number, the day of the week. Driver's license - no more. I reassure time and place via the newspaper, TV, and friend's advice and the call for dinner. Relatives - I need some help -- neighbors, folk at our Church, and which relatives at which addresses.

Maureen, my wife, has magic! Her expansions of options beyond typical solutions of problems hits the bell. My physician prescribes various medications and vitamins. My wife has become a deity for me for help "where did I put my hat?" and "what day is it?" I recognize my four sons, their families, and they send gracious support.

I have satisfaction from those memories of times on the farm - Arkansas, 1931. Also those memorable rides with my father on those old steam locomotives…but can’t remember where I put my hat. I find great satisfaction with my art with various colors, pens, pencils. I have my "office" at a room facing East with trees, and many birds. Those birds are comical as they find that food.

While my theological dimension has extended my tolerance for limitations, it has also provided ways to bless the day for which I'm thankful. ////

I am just lucky!! My experience with Alz encounters: No more driving a car! Ride but not drive! My experience with loss of words is most prominent now. I can get into a sentence, and forgot what I was trying to say... or not find the right word... and spelling -- I can remember the word I want, but have lost how it is spelled... What I did yesterday ... well, to be sure look at my "Daily Suggester 2005"... and I can orient myself to the now ...Yesterday ? well depends if I took notes... not sure.
I do remember today is August 7. Seems very slow, but sure, that some memory will suffer a shut down on a few memories or the 'right' word.

To those theological networks... well I prefer simple. God is between you and me... spatial... church services, Scriptures, and Hymns ... sermons? hard to follow .. friends there .. new folk? not so sure, old friendships .. still there ...Funny thing is I can observe my self as it recalls history or yesterday...////

Martha .. on the "presence" of God .. or do I still 'believe' in God .. Yes... what I think is pathway to the presence of God may not provide as much as I find in the sound of the hymns, the exchange with other folk at worship, but the theological dimensions are fading... for me it is the slowness .. and time can go by and, then, I'll stop and realize I have not had that theological notion anymore .. what quirk made me even ask the question ... I must say it is a weird path ... am not scared ... nor "mixed up" ... just fading, not there, and amazing, I can realize it's fading... as if I am an objective part of my mind that observes …////

Alzheimer's is like a "JIGSAW;" the pieces don't format themselves to the pitch of my hands ... I used to paint with oils with crafty brush strokes at "my" direction. But Alz does not reflect on "direction"... well of course, my production might be just what is wanted by some artistic viewers - otherwise in a "crazy" mood.////

My Alz has thus far dampened my memory. It's like when my mother asked me to go to the grocery (1935) store at the age of 7. I'd forget that she asked me to bring a pound of bacon from the store. Well, now I'm 79... and same thing as age 7, I forget what I was supposed to .. whatever. Not to reduce the heavy sense of Alzheimer's to a 7 year old's perception, but the "control" of memory IS an issue for me at 79. If you asked me what store?, street?, is "today" Monday or Thursday? Puzzled, I pause. An "answer"- and I look it up!

Martha, I'm a PhD. Got it the hard way. Few years ago, the alarm sounded! I was preaching in a rural Church in Ohio - forgot my Bible, my sermon notes, panic! Any old sermon notes - please come up. Silence! So, I said to that congregation, "something has happened to me, and Let's have the last song, prayer, and go home." Woe is Me! That next Monday my doctor, tested, and diagnosed ... "Yep, you've got ALZHEIMER'S".

Now this is the background I'm coming from. MY issue is - how can I thresh my seeds of Alzheimer's to benefit other folks? I attend regular meetings sponsored by the Alz Clinic here in KC and they are pushing me to "get your book done and send it to the publishers!!"////

When I die, then, I expect to tell God all about "what happened" if God can stand still while I talk.////

No we don't control God and God's "control" of us is ours to claim. Perhaps the word "Control" is not extensive enough. God "is" ... what does it mean to "be" ... Ah, we could wade through a lake of words about God and never exhaust just "how" God beckons us to be controlled by love. The love of God does need the parental "control" to "make" us be good.
Well, just thinking about it ... have a wonderful Summer Day ... we're in the 90's now…beautiful. ////

Anything about Alz for other persons who are likely to "roll in the dust" of Alzheimer's. I'd do anything to help their "shock" or "whatever" in the discovery they've joined that so called 2 million that have Alz ... ///

As I write, I'm also close to the NBC screen... and the conflict/combat in Iraq. somewhat cousins: Iraq/Alzheimer's. Somehow both conflicts are crazy ...///

When I'm with Alz folk, I realize there are all kinds of levels that us Alz folks give up ... for the "cause" ... but it is with energetic anger when I do lose... 'whatever it was ...' 'where did I put that pencil ... But, of course! I'm an 80 year-old and I'm supposed to be "forgetting" .. "now let's see" .. Naw, I do try to focus on my good days rather to gripe for the days when they don't "come together" as I planned .... Wow some poetry in that.///

(A month or so agoin, I e-mailed Paul and told him that I would be speaking at a conference for clergy about Alzheimer’s and asked him if he had anything he wanted to me tell them. He responded 4 times.)

I'm interested to make connection info about Parish's resources for the Alzheimer's needs and their contributions..."they" say that theological ideas or memories are erased via the Alz settlement. Not necessarily. I with my wife still attend our Asbury UMChurch (my wife does do all the driving) but my mental apparatus is OK for most things necessary to make the day's expectation.

Well, I'll not again mount the pulpit, but I'm a good listener and converse one on one ...and we have a small group interested in the "Theological Aspects of Alz." What my wife and I are finding in our local Alzheimer's Group Sessions in KC Mo, a company who understand ...a place to "tell it like it is." companionship and friendship ...Our leaders are "set" to do some writing about Alz and how we're confronting it.////

I'm 80 years ... Having to ask for help... in any way... is not my "cup of tea" I do think especially for males... "I don't want help, I'll do it my self..."has been a measure of maleness, independence, and "I'd rather help you!!"
All through my life... a male ... "he can do it" "of course he can help" ..."Poor guy, HE can't "make it" anymore .." and HE doesn't want any help!!

I'm 6'3". Infantry 2 years. Combat France a bit ... inherited maleness from my father's big railroad locomotive .. could tons and tons .." just keep the boiler hot and we'll make it.." and the onlookers .. "You CAN do it" ...

Only girls play the piano ...But I played Beethoven, etc ... and I was somebody ...male musicians "do it well"... music even
I do think there is something to say about male theory... we can't birth a baby ...yep they are seen as the strong one, power, and protection of the woman.... sometimes when we compare the type of strength of the female and the male "little boys don't cry." We have to define just what "strength" is or means. Then we might break meaning and find strength across which bridge we're crossing... war/labor muscle/brain. I think about having a female vs male prison... ie, how we define persecution for what charges...

I'm all over the table with this. I do think what I've got, Alz, hits the man more frequently than female. I'll have to research this a bit...but you are on the issues quite solid ... have to ask what is "power" really?////

If I were approaching the family, and we have had a good conversation, I'd approach the prayer something like this:
Loving God, with gratitude to your servants all, who have provided care during this difficult time. While her loss brings sorrow for us now, we realize she is in your hands. Guide us through the days ahead until we meet her again as we finish our time on earth with your love and guidance. Amen.////

Thanks for your assistance - your suggestion that I write what I did is help for me... took me some time .. And your request! It set me to shape my own death. I've told folk that, when I expire, I want my body to go to the doctors who might look at my insides and get some ideas that could lead to an extensive view about Alz!
But, you know, I got my Dx there in Ohio... have had a wonderful life and I'm 80. I'm sorry to leave a wonderful wife, children, and friends. My Church life has been wonderful...so I can say love. Paul ////

(And Paul’s most recent comments-)

I do appreciate our conversations .... I don't remember if I've answered your note - Let me know and I can extensively about Alz .. I do think I've "graduated" into some level that the memory needs to be "patched up" a bit. Oh MY! Early March, and we're having 70 degrees... but I'm also aware that we could have SNOW .. if ... Paul////

Great to hear from you ... I must say. my Alz is not as severe as some of others .. Guessing I'm going back 3 or 4 years that my Doctor could diagnose .. I do take pills that I think slow the Alz ..

Did I mention we attend Asbury UMC ... pastor there was in my Clinical Pastoral Training class at a local General Hospital here in Kansas -- years ago... I was chaplain-supervisor at an old Psych Hospital around here also ...

Well, I "do and go" with a "little help from my friends..." as the song goes ... Maureen is heroic in her "watch over' me .. she is a former Catholic Sister ... nope I did not shake her out of that tree ... she "got out" before I came along ...

Here in Kansas City... home base ... Can find North .. so no losing my "way" ..I do think your writing about Alzheimer's is a good thing .. "They" say that there are 2 million of us in the US .. ugh!!! How's that for a conference!
Thanks for your note .. anyway I can be of support .. just let me know .. ////

Yep . I'm on the "edge" with Alzheimer's conversations among us - ie that have Alz.... but "they" say there are 2 million folk in USA have Alz ... but around here in the KC area .. I don't find too many ... my wife, Maureen, and I attend Asbury UMCh regularly .. Maureen is a former Sister .. I did not "lure" here away from there .. she was ready some years ago to see the world ... she is a writer for RC and is a SS teacher in Asbury .. well, the pastor there was one of my students in the Clinical Pastoral Training ..

Well, I'm a new 80 year guy... I've not had much of my writing published so .. My ministry has been Pastoral Care so now . "Here We Go ..."

I must say, I've never written for publishing .. even at my UMC Cokesbury Publishing .. See Ya ////

..and Alzzz does erase sentences stored in memory ... I'm enjoying a beautiful day here in a MONDAY in Kansas City .. temp. is in the 60's .. feels like 70's ... Well, in KCMo .. usual ... except.. we are likely to have one of those "Northern" swipe with North wind .. temp goes down and down ... but then, that would be the "last" cold spell ..

Alz "plays" with memory ... Yesterday (Sunday) my wife and I attended Asbury UMC here in KC ... pastor there was one of my students back when I was the Clinical Pastoral Training" at an old Psychiatric Hospital .. here in Kansas .. ah now they have removed the old hospital and replaced it with wonderful new buildings ... I met the new Chaplain there .. Ah HISTORY ///

I'm now 80 .. did I mention that .. and still have my thinker, but the rememberer ... well that's something else ...Paul ////

Ah .. your question ..what do I need that is not provided ...???
I did not intend to avoid this question in past notes ... and honestly, I have thought about what I need ???
Thinking about "Theological Aspects of Alzheimer's" .. Or another approach ... "When the mind is "out" .. where is God?" Simple - people who visit me bring God with them .. and although I may not remember their names .. I'll "know" .. Alz is a "condition". .. God is a "promise" ...well, I'm thinking about this .. and am gathering my "notes" as they come to me that might make a "paper" even a bulletin, or even a book ... Hang on there! Paul

 

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