Making Decisions for Dementia Patients: A Christian Perspective

Christians make decisions that look imprudent in the world's eyes.  We do it out of faith, and the world doesn't know what to make of us. 

Secular counsel tells us we must be wise in how much we give, spend, and save; the world says we must measure, weigh, count, and predict. We extrapolate from current trends to a projected future, and worry whether we will have enough. It is only as we focus upon Jesus' face that the waves and winds of "what might happen" fall away.  We come to rest upon the rock of His all-encompassing love, and fear dissipates. 

I decided to take care of my mother in my home because the Lord led me to do so.  That's the short version of a story that stretched over several years of time and included numerous sessions on my knees shedding Gethsemane tears; I struggled against the Holy Spirit's push to retire early and take my mother into my home.  God was gentle with me even though the sacrifices I felt I was making filled my vision. I did eventually pray "thy will and not mine be done," but I moved forward with fear and trembling.  I gave God my puny retirement plan, my not-big-enough pension, and most difficult of all, the sense of purpose and calling I'd had as a teacher, and I retired eight years ahead of time in order to take care of Mom.

Sometimes my story can cause undesired outcomes for fellow caregivers.  More than once,  heartbroken sons or daughters of Alzheimer patients have shared, in tones of confession, that they were unable to be the primary caregivers for their loved ones. My response is this:  Unless you resisted the Holy Spirit's push over years of time, you can let go this guilt (and through confession and repentance, you can be rid of it anyway).  It took three years of something that felt like a spiritual vise gradually but irrevocably tightening around my reluctant heart for the Lord to encourage me to move forward with early retirement plans.

If you are a child of God, He knows how to guide you to the path He wants you to follow. Unless you are willing to say, "No way will I do what You want, Lord," then it is pretty certain you won't miss His signals.  He will narrow the path before you and work through your circumstances to bring about His will.  In the end I truly didn't have much of a choice.  It would have taken outright rebellion; a Jonah-like running in the opposite direction, for me to avoid quitting my job.  Even then, the Lord has ways of turning His recalcitrant children around.  I didn't want to experience God's modern-day equivalent of incarceration in the belly of a fish.

Another response to my story has occurred in the minds of just one or two people who have sought my counsel, and needs mentioning.  All of us tend to create "wouldn't it be nice" scenarios of the future.  When we are unhappy with our current life circumstances, even Christians are in danger of attempting an escape by a route God has not provided, and occasionally that deliverance might seem to be taking care of Mom or Dad.  The logic goes like this:  "I'm out of work (or unhappy with my job/circumstances/salary), so  I'll take care of the folks and things will work out somehow because it is God's will.  This kind of castle building tends to backfire (especially if other siblings are involved).

God's purposes may first appear to be at right angles to our own, and this can be a clue that we aren't concocting a plan of our own making. There is nearly always an initial resistance to the Holy Spirit's nudges that must be traversed.  The awareness of blessing and vast relief of being freed from the confines of my job came after the decision was made, not before.

The blessings of obedience are peace of heart and mind, and the cliched saying that "You can't out-give God" is true.  We somehow are better off financially now than when I was working full time; and it doesn't make sense that this should be so.  We are farmers, and two of the three years since my retirement have seen severe drought and low crop yields. 

Every dementia patient is unique, and the solutions that work for one family won't necessarily work for another.  Test the spirits, be much in the Word, and seek Godly counsel.  Pray through to peace about the decisions you must make, and rest assured that for both caregiver and patient "...my God will meet all your needs according to the riches of his glory in Christ Jesus" (Philippians 4:19). 

You Take the Car I'll Take the Train

A characteristic of my mother's Alzheimer's is her inability to attend to more than one aspect of a situation.  She has lost the ability to discern nuances of meaning in conversation, and this leads to some interesting exchanges.

Linda:  Hi Mom--I'm getting ready to clean up for the day and thought I'd check on you first, how are you doing?

Mom:  I'm just fine, but you need to comb your hair.  

Well, yes, but I'd just said I hadn't yet groomed!  However, Mom registered only what her eyes told her; I was a bit of a mess (this is not unusual for me at 7:30 a.m., but Mom wasn't cutting me any slack for the time of day).  I was offended, though I hadn't ought to have been.  It has been nearly ten years since Mom's Alzheimer's diagnosis.  Her ability to converse on any level at all is worthy of my approval and praise. Nevertheless, even after all these years I often react as a daughter rather than respond as a caregiver when she's a little (or a lot) rude.

This evening I was emptying Mom's trashcan when I noticed she was singing along with her Statler Brothers' album:  "You take the car I'll take the train," warbled Mom.

Linda:  I don't think I've heard that one before," (pauses, listens...)  Wait, they are saying 'I'll take the blame.'"

Mom:  (disdainfully) That does not make sense.  It is train.  (Sings, more loudly this time for emphasis) "You take the car I'll take the train..."

Linda:  O.K.  

Mom:  (hesitates, then reluctantly admits..) Well, I guess it could be plane.  Plane would also make sense.  (singing) You take the car I'll take the plane....  

At this juncture I abandoned all I know about caregiving and attempted to correct and explain: "I think the couple is breaking up.  I think when there's a breakup one person takes the blame and the other gets sympathy.  So I think maybe they are saying "One takes the bow one takes the blame..."  

But Mom wasn't having it, and it was obvious I was disturbing her peace.  So finally (belatedly) I agreed with her..."Yes, I think you are right," I said.  Mom, however knew I wasn't convinced, and continued to sing her version of the song loudly the entire time I was in her room, even though the Statlers had moved onto another melody altogether.

Dementia patients are proud when they feel they have figured out a problem correctly and need affirmation as much as the rest of us.  I shouldn't have diminished Mom's joy by attempting to correct her tonight.

If you have a few minutes you might have fun listening to the song Mom edited this evening, One Takes the Blame, by the Statler brothers. 

Right Where I'm Supposed to Be

Throughout my childhood I often asked my mother to tell me the story of the day I was born.  A blizzard delayed the doctor’s arrival, I was a shoulder presentation, no surgeon was available to conduct a C-section, and so the doctor heroically delivered me by himself.  He told my father that he doubted the baby would live, because he felt certain I’d inhaled amniotic fluid.  One arm was broken as I was delivered; the other was paralyzed from nerve damage and had no movement at all. 

On the third day following my birth, a nurse carried me into Mom’s hospital room, and just as she walked across the threshold, I lifted the paralyzed arm and placed it on my chest.  Mom cried, the nurses cried, and a few years later whenever my mother told me this story I would smile smugly and feel special to have caused such a ruckus. 

Traumatized by his wife’s ordeal, my dad refused to consider more children, and so I was raised an only child, something I’ve never minded except during one brief period of time when I was about six and asked my parents for a baby brother.  That was just a passing whim, and I recovered from it quickly.  I think I always knew that being an “only” had definite advantages, not the least of which was being the sole recipient of gifts purchased with Mom’s Christmas fund each year. Life was good.

I’ve always believed God has a purpose for each of our lives, or perhaps a number of purposes He desires us to fulfill over the course of a lifetime.  I’ve been my mother’s primary caregiver since she was diagnosed with Alzheimer’s in the spring of 2004, and early on I was convinced that caring for her was a part of my life’s purpose. It wasn’t out of my own loyalty or emotion that I chose to become Mom’s caregiver; I simply felt an overwhelming conviction this was something I was meant to do.

Over ten years of caregiving, this sense of commitment faded, dimmed by daily routine and habit. But then came the morning of my 60^th birthday when I made myself comfortable on Mom’s couch, coffee in hand, and said, “Tell me once more about the day I was born.”  As I prompted her with the specifics of the story that many repetitions had made so familiar to me, I wondered for the first time what a “shoulder presentation” might be.  I did an Internet search and found various sources that say a shoulder presentation (also called a transverse presentation) is always a C-section because it is nearly impossible to produce a live infant once labor begins and a shoulder presents. 

This information brought an almost disturbing sense of humility, but the next thought was a startling realization that if my life had not been spared, my mother would now be alone in the world.  It’s one thing to have a politely distant and spiritual impression that perhaps I was meant to be Mom’s caregiver, but somehow the realization that but for God’s grace I wouldn’t be here at all puts things in clearer perspective. 

Perhaps my life was spared so I would be here to take care of my mother during her long journey through Alzheimer’s.  Maybe this responsibility I’ve sometimes viewed as a temporary interruption in reaching goals of my own making has instead been one of the main purposes of my life.  This is an important shift in perspective because it is protective for Mom; in short, it provides me a needed attitude adjustment. 

Every birth is dramatic, everyone has a special story, and every life is precious.  During the anonymity and tedium of ordinary days, we lose sight of the truth that our job assignments may have a higher purpose. Peace of mind accompanies the admission that I’m right where I’m supposed to be.