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
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!