Alzheimer's and Gospel Transformation

A few weeks ago, I met Karyn Heath at a conference. As she spoke to me about her job caring for people with Alzheimer's, I immediately asked her to write a guest post for my blog. This is necessary reading for all those who fear the future and those who are dealing with this disease right now. --Carolyn

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Recently, I left two years of teaching in China to return to my home and job in the U.S.  For me, introductions have become routine.  After a few months in China, I could predict which questions would be asked when I met someone and what responses my answers would provoke.  Now, as I transition back into my home church and hometown, I am finding that the questions and answers are equally predictable.  While “Where do you work?” may seem to be a standard question, people’s responses to my answer are usually revealing. 

I currently work in the activities department of an Alzheimer’s special care unit.  This translates into the fact that I spend eight hours per day in a room with 20-30 people who are experiencing moderate to severe dementia from Alzheimer’s disease or another cause.  Revealing this usually opens up interesting avenues of conversation.  One sentiment that I hear often from people who talk to me about my job is this one: “I’d rather be dead than go through that.” People have a variety of ways of expressing this feeling, and most often I just nod and say something like, “It is a difficult situation for people and their families.”  There are very few ways to accurately communicate anything about Alzheimer’s without becoming too intense for a “Hi! I just met you” conversation.

 However, when I am speaking with someone who professes to have been transformed by the Gospel of Jesus Christ, I often cannot contain my passion when I hear him or her make a comment of this sort.  Until recently, this passion would have come across with a strong flavor of righteous indignation, but now wise admonition, further study of God’s Word, and personal experience have tempered the expression of my views.  To look ahead, even in one’s imagination, and see something as difficult as Alzheimer’s disease looming over one’s last days is naturally heart-wrenching and daunting.  As Matthew Henry commented regarding Jesus’ prophecies in John 21 about Peter’s own difficult death, “He that puts on the Christian does not put off the man. Christ himself prayed against the bitter cup. A natural aversion to pain and death is well reconcilable with a holy submission to the will of God in both.”

That very concept of “holy submission” in the face of certain humiliating and ugly death is that with which my heart longs to challenge the body of Christ. 

As Christians, we should recognize and revel in the sovereignty of God in every aspect of our lives.  Our goal should be to bring glory to God, and, as we face trials and difficulties in this life, we spend much time in learning how to do that.  In our growing, we learn to submit to God in all the twists and turns of life’s pathways.  This is a common theme of our times of fellowship around the Word, of our songs, of our books.  If we face death in an early or unnatural setting such as persecution or disease, we exhort one another to glory in the affliction as it brings us closer to God and brings to pass His purposes in the world.  His joy and strength shine through our most trying moments with a light that is so much brighter than anything we could possibly manufacture with our own willpower or resources.  The whole of life seems a classroom in which we learn these lessons.

I believe that we fail to see the fullest scope of God’s plan when we do not actively encourage one another to think rightly about God’s sovereignty over the last days of our lives.  Perhaps, I exaggerate, but it seems that we envision that each godly Christian is entitled the perfect death scenario. We want be in our right minds, surrounded by loving family and friends in graceful dignity or otherwise slip away to heaven gently in our sleep. An extended illness we might face with fortitude, but certainly not one that might steal away our memories or personalities on its way.  Yet in the very loss of self that terrifies us when facing Alzheimer’s or similar diseases is there not an unparalleled opportunity for seeing the transforming power of the Gospel?

In the years that I’ve worked in Alzheimer’s care, I’ve never actually heard someone say, “This may not be my choice, but it is God’s choice for me.  I relinquish control of even my mind to Him. I can trust Him with even this.”  I have, though, watched a tiny handful of people live this out.  The beauty of their lives truly demonstrated the fact that God is magnified through weakness.  They reached people that no one else will ever reach.  In the process of Alzheimer’s disease and other illnesses that cause dementia, there is a point beyond which a decision like this can no longer be made.  Whatever is inside will just begin to spill out, embarrassingly and uncontrollably.  So, it is the thought processes or, rather, the heart processes that a person goes through before hand that have potential to shape their experience.  Sometimes the emotion that pours out of a person in the throes of such a disease is fear or bitterness or anger long forgotten but now providentially dredged to the surface.  In such a worst-case scenario, the witness of the Spirit of God’s work in that life is preserved in the memories of family members and friends who rehearse the Truth that ultimately sustains.  More often in my experience, grace still shines through in small joys and courageous humor, in peace that transcends turmoil, in love that gushes out around the jagged edges of the mind. 

I am reminded of a dear friend who recently died after struggling with early onset Alzheimer’s for a number of years.  When I met him, he was only sixty-five years old.  If you didn’t know his diagnosis, you’d have never guessed.  His confusion and cognitive issues were slight and only his recent memory was unstable.  Without a trace of bitterness, he gave up his dreams of retirement and threw himself wholeheartedly into “volunteering” at an Alzheimer’s day center.  While he paid to attend, it truly was volunteering.  He helped run programs and activities.  He cleaned and cooked and sang.  He courageously watched people around him lose their abilities and memories, knowing that this was his own path, also.  He loved the other patients and the staff with a joyful passion that was free of bitterness.  He comforted families with his humor and endured the breakup of his own marriage with longsuffering grace.  By preparing for his future wisely, he was ready when it really was his time to live in the full care program since it had been his life for years.  He was unashamed of his tears.  Once he told me, “It’s like I’m going down a ladder into a dark hole with no way out.  I feel like Job and ask God why.”  Yet the darkness that shadowed his last days could not erase the blessing he had been to residents, staff, and families for so long.  Examining my heart in the light of this possible painful path for my own family, I pray that we would have transparent dependency on God’s grace if such a situation were His plan for us.

We live on the edge of a time when a large section of our population will be heading into old age together, and the transition will include diseases like Alzheimer’s, financial problems, relocation, grief, and other problems.  Our churches are full of people who, now in their fifties and sixties, will be facing these issues along with their families.  The communities around us are already filled with needy seniors--physically, emotionally, and spiritually needy.  While education and resources and programs are important, the preparation of our hearts before God is primary. 

To return to Matthew Henry, “What a change will certainly be made with us if we should live to be old! Those who, when they were young, had strength of body and vigor of mind, and could easily go through business and hardship, and take the pleasures they had a mind to, when they shall be old, will find their strength gone, like Samson, when his hair was cut and he could not shake himself as at other times…  It is the great concern of every good man, whatever death he dies, to glorify God in it; for what is our chief end but this, to die to the Lord, at the word of the Lord? When we die patiently, submitting to the will of God—die cheerfully, rejoicing in hope of the glory of God,—and die usefully, witnessing to the truth and goodness of religion and encouraging others, we glorify God in dying: and this is the earnest expectation and hope of all good Christians, as it was Paul’s, that Christ may be magnified in them living and dying.”

By God’s mercy and grace, may we endeavor to uphold our senior brothers and sisters in Christ who aspire to live and die this way!

Comments

[Christine Dattilo]

I can’t thank you enough for this article!

This weekend I am flying to see my family where my father will celebrate his 80th birthday. He is deep into the middle stage of Alzheimer’s. He will know me, but not his grandchildren. He probably won’t remember why we are celebrating.

I’ve selfishly been dreading this trip. Why? Because I don’t want to see him, nor my mother go through this pain. I fear the future. My father is a godly man who has walked with the Lord for over almost ¾ of a century. I fear that we will only remember what is happening now until he goes to be with the Lord. I don’t want to face that.

You’ve challenged me to think through my father’s (and mother’s) difficult providence in a gospel way. I’m not sure as a daughter exactly how that looks. So words of wisdom would be welcome.

Thank you for the challenge and opening my eyes to a new way to think of Alzheimer’s.

[Suzanne Bailey]

What a thoughtful and wise post. This was a real blessing to me. Thank you, Karyn and Carolyn.

[Carolyn McCulley]

Christine, I'm so glad to know that this was a timely post for you. I don't know if Karyn will be able to respond, so I will post the one thing I have heard. I've heard many times that those who suffer from various forms of dementia will still remember the words and melodies from various hymns they sang, especially the ones they've know all their lives. It seems that songs stay a long time in the memory banks. So perhaps you can fellowship together over music. I certainly hope so. Blessings on your trip.

[Laurie Price]

My husband has early onset A.D. as well. We both love Jesus, and though we never expected or wanted this, we desire to be submissive to our Sovereign and LOVING Father. He has big plans for Gary and He is using him in amazing ways, as I share our lives. His main prayer, when he first knew about this "path" several years ago, was "God please use my life to glorify Yourself, and don't let me shame You in any way." God has been answering this prayer in our lives. I have a blog where I write about Gary and our lives with this disease at http://www.ihavebeenyoung.blogspot.com/
I welcome visitors, as I want to be an encouragement to others.

[Jocelyn]

Carolyn, thank you! My heart resounds with all you have shared. My Mom was diagnosed with Alzheimer's at the early age of 48. She went home to be with the Lord two months ago on Tuesday, just before her 63rd birthday. Much of what you shared is what we experienced on our journey. Your words encourage my heart all the more as we continue to process and grieve. Thank you! http://www.strandsofgrey.blogspot.com/

[Dan Johnson]

I lead a mid size long term care organization in Minnesota. We have two memory care units that we manage. More than any place in our buildings, hope is needed there. Thank you for brining your Godly perspective into the workplace. It is light and salt and much appreciated.

[Renee Coyer]

I am so blessed to read your article ! I am rejoicing that we are not the only ones who have witnessed the miracles that can occur through Alzheimer's Disease. We have a beautiful story of how God used the disease to bring my Mom to salvation, healing in many family relationships, besides that ways in which God grew us in our sanctification process through this trial as we kept our Mom home with us, no nursing home, until the end. It was the most difficult 7-1/2 years of our lives, but the most bless-ed too. We came to the end of ourselves- totally had to rely on our heavenly Father for everything- and though it, saw the Truths of the Gospel transform us all- we saw miracles & much blessing.
I thank you for your boldness & believe that more of us need to share in this way.
May God bless your article to challenge many that read it.
Sincerely, Renee Coyer

[Amy]

What a wonderful article! I have worked with and on behalf of dementia patients in the past, and this is a group that still has much to teach us but that also needs the support of their brothers and sisters in Christ. It's a disease that takes a huge toll on the whole family, so their caregivers need us, too.

[Karyn Heath]

I'm so humbled and rejoicing to read these comments.

Christine, maybe one important thing to remember is that your clearest communication to your dad will be through your nonverbal expressions: your voice, your smile, your eyes. If you are able to set aside your own sorrow for him and your mom and let your love and acceptance and thankfulness for him shine through your face, then you will be a huge blessing to him in the present that he lives in. Let him know that it doesn't matter what he can do or not do, what he can remember or not remember-- he is loved. Treasure every good moment of the time as a gift, expecting that awkward times will come as well. I will surely be praying for you and your family.

[Diane]

Karyn and Carolyn,

I weep as I read this article wishing I would have read it 3 yrs ago. My dear sweet mom died less than two weeks ago from dementia. She was in an assisted living home but I was her sole caregiver and I didn't have anyone to come alongside and help me to understand all that was happening to her. I had to get my information from the Internet.

She was a believer and I was with her when the Lord took her. Oh, she was surrounded by praying Christian loved ones when she went, but it wasn't anything like some of the wonderful stories you read about. In fact, it was the most horrible death I have witnessed. It wasn't till God answered our pleas to take her that we were able to sing hymns around her bed and rejoice.

I am having trouble sleeping at night - even though I am a firm believer in the Sovereignty of God in ALL things.

"More often in my experience, grace still shines through in small joys and courageous humor, in peace that transcends turmoil, in love that gushes out around the jagged edges of the mind"

THANK YOU FOR THIS!

This quote has been most comforting to me because I can say YES to this! I saw this too! I sometimes worried that she was not truly saved for her lack of spiritual inclination in the last 2 yrs. It frightened me so much. But the day before she died (2 weeks ago today) - nothing, could comfort her suffering as she cried out to God continually for help. Hospice had not even started the morphine yet (that's how poor her dr care was!) - Finally, having tried all I could to help, I gently stroked her head and sang "What A Friend We Have In Jesus". She immediately quieted down and slept peacefully for several hours. God used that little incidence to reaasure my heart that although she may have appeared to have forgotten Him, HE NEVER FORGOT HER!

I realize this is probably TMI to post on the Internet, but I know God sent me here today. (thanks to Rebecca).

Thank you for ministering to me in my sorrow and may He continue to bless your beautiful ministry!

[Carol Noren Johnson]

Truly the LORD God is sustaining us as we go through my husband's Alzheimer's and Vascular Dementia. My husband has such a good attitude and humor and reaches out to his friend "Jake" who can't drive now because of Jake's Alzheimer's. Jake and my husband have a unique bond and enjoy so much telling each other the same stories over and over because neither remembers them. We wives thank the LORD for this friendship between our husbands.

Emotions last even if the memories are not there--mainly short-term memories at this point for my husband diagnosed 3 and a half years ago. My Christian husband tells me every day he loves me and our bond is also very sustaining as we live out "for better, for worse". We praying together most days and I will share my daily Scripture with him as he reads very little now.

I am in an Alzheimer's Association support group and study the disease rather than having my head in the sand. Believing in God's sovereignty and daily Scripture is what is sustaining me.

I also blog about the experience at http://plantcityladyandfriends.blogspot.com/

[Karyn Heath]

For all of you who have commented, especially Diane, I would love to recommend this book which I just finished reading. It's called "My Journey into Alzheimer's Disease" by Robert Davis, published by Tyndale. This pastor shares his spiritual, emotional, and physical testimony as he experienced the onset of Alzheimer's. My eyes were so opened to the trial of faith that he,and so many others, endure through this disease. I was blessed to find that Robert Davis' experience was, as Diane shared, that even when he could no longer reach out to Christ, Christ never let go of him.

[Diane]

Karyn, Thank you so much for your comments and the book recommendation. It seems there are so many I know right now who are on this journey and this will be a very valuable book to have available. God bless you.

[CZ]

My Dad died of Alzheimer's disease in 2006. He was 87 which seems like a good number of years but due to genetics we thought he would live to be 100 as his Dad and grandfather had. Dad always had a horror of disability. It did not affect his behavior to others but it was something he feared. When he started to wander and became incontinent we had to put him in care; the family could no longer manage. There wasn't a day that we didn't regret the decision but we knew we had no choice. Even now we hurt thinking back to those years. Hurt for Dad and his pain, confusion, the indifference of some care givers and his loneliness. But Dad was a Christian. As the years passed we could see God continuing his good work in Dad's life. He was known as 'the preacher' so despite his confusion and struggles with speaking he continued to testify. When he eventually died he could no longer walk or speak but we had had some good times where he would lay in bed and listen to us talk, laughing when he found something funny. He took 5 days to die and during 2 of those days he was no longer aware of his surroundings but his lips moved as if he was having a conversation with Someone. We are convinced that he was not alone during those final days anymore than he was totally alone in his days at the home. We look forward to seeing him again fully healed.

[Jane Hinrichs]

This is a beautiful and full-of-truth post. It is so hopeful. I confess, there is one death I would hate to have - -one that I even fear (though maybe fear is too strong, but I say I'd never want it) is to die from ALS (Lou Gerig's disease). And I have no reason to believe I would ever contract that disease, but after reading this post, I think, even if I did, God could be glorified in that too. Thank you.

[Connie Abbott]

I had a non-Christian mother-in-law with Alzheimers...and I remember as a new Christian discussing faith with her. What I noticed was that while she was very confused about life in general, as soon as we started speaking about God she became very clear about what she believed (which was unfortunately very staunchly against biblical truth). Since then I have always wondered whether the soul, or our spiritual state, is the last thing to surrender its hold on the mind? It could have something to do with why songs (the choice of which seem to have so much to do with our spiritual state) retain their appeal so long into the progression of Alzheimers.
Thank you so much for such an important statement about our view of aging and disease. It has so much to do with how well we can glorify God as these things will inevitably take their hold over so many of us. May we all seek to be prepared for whatever God holds for us, to take it with grace and serve Him faithfully to the end.

[Rachel]

For anyone else that reads all these comments seeking encouragement & hope, I want to add one more experience pointing to the truth that God never lets us go. During my husband's seminary training, we volunteered in an alzheimer's unit at a nursing home to do a Sunday morning service. One lady, though she could no longer speak, was absolutely giddy with joy every time we showed up. We assumed that was her normal personality as the staff never mentioned otherwise. Near the end of the school year, she had visitors that Sunday. Her son told us her story, that she had spent most of her life as a Christian school principal vibrant. Alzhemiers had changed that. The only time she was excited & joyful, full of smiles & singing (tunes, not words) was when we walked in the door to "fellowship" and speak truth to people we were pretty sure couldn't really understand us. It was amazing to realize that her spirit was responding in fellowship to us, even though she wasn't able to respond at other times.

[Robyn Smith]

This article is encouraging to me, the primary caregiver for my mother. But I am desperately seeking answers. My mother was diagnosed with Alzheimer's 5 years ago. I have been with her through every step in her decline. What should a Christian's perspective be? All my life, I have known her to be a lover of the Word of God, a lover of truth, an eager witness of the Gospel before unbelievers. Now, I often ask "What happened to the Holy Spirit? Has He left her?" She gives me glares out of hell and tells me that I'm a liar and should go to hell; she says the Bible is not God's Word; when I try to remind her of God's grace, her answers usually start, "But you..." or in anger she says "God doesn't love you; Christ didn't die for you." She physically and verbally beats me (and others) almost daily. Her words seem to come directly from the pit. Once I asked her who was speaking and she said,"Satan". Is this just forgetfulness, or is there some spiritual aspect that we are just labeling "Alzheimer's"? Should we just give her pills that sedate her or pray for deliverance?

[Mary Banuelos]

Your post speaks about fellowshipping with a Christian that has Alzheimers. Do you have any suggestions about how to witness to someone with Alzheimers that may not be born again? My mother-in-law has Alzheimers & her communication skills are minimal. Sadly early on in our relationship,my husband & I have been married 25 yrs, I never spoke to her about God & Jesus. I just recently renewed my walk with our Lord & want to share the gospel with her. Any suggestions would be appreciated.