Hats

When I was teaching first grade, I decorated a spring bulletin board featuring construction paper hats flying through the air in a wild March wind.  With this in mind I  wrote the rhyme below for the March installment of the caregiving column I write for our small town's monthly newsletter.  I trust my fellow caregivers will catch the nuances of heartache and joy behind the frivolous words of this semi-autobiographical ditty.  (I know being able to rhyme is not at all the same thing as possessing an ability to write poems, but hope you have fun reading this anyway).  

 Hats

A daughter went to town one day

And chose a brand new hat

She took it to her mother

Who said, “We need to chat.”

“I’m getting on in years now,

My mind’s begun to flee

I think you’d better shed that gear

And act responsibly.”

The daughter loved her tasseled hat

It was a mortarboard

Her style! Her class! She truly thought

A change of hats untoward.

But Mother doffed old garments;

The apron and chef’s hat,

Exchanged them for a patient’s gown

And frivolous nightcap.

The daughter put her hat aside,

With drama, tears, and woe…

 “I sometimes overreact” she owned,

The mother said, “Just so.” 

“You were a child, and thought like one

Your childish days are past

It’s your turn now to be grownup.”

Her offspring was aghast.

The daughter struggled hard at first

But then as time went on

The burden eased and blessings came

Through battles fought and won.

We don’t choose the hats we wear

The Sovereign holds control

And if we balk beneath His hand

We do so to our woe.

Love is the one best constant

Holds firm through every test

Though hats and people fade and change

God’s love always knows best.

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"We are confident that God is able to orchestrate everything to work toward something good and beautiful when we love Him and accept His invitation to live according to His plan" (Romans 8:28 The Voice Translation).  

Avoiding Elder Abuse

Early in my caregiving journey with Mom, I attended a support group meeting that featured a speaker who was an elder law expert.  In her talk this woman said, "If you are considering taking care of an elderly parent, you must give up this idea if you were ever abused by that parent in the past.  You will become an abuser yourself."

I doubted her words then.  I am a Christian and I know about forgiveness and walking in newness of life.  I'd been raised by a mother who never hit me, but I believed that even if caregivers had suffered ill-treatment, they nevertheless ought to be able to keep from becoming abusive toward an elderly parent.  But after ten years of caring for my own mom, I think I understand that elder law attorney's reasoning.

In the early stages of Alzheimer's disease, patients retain intellect, but lose memory.  As the disease progresses and the patient loses the ability to perform daily tasks that were once routine, caregivers might not realize that although the patient's analytical skills are diminished, they may nevertheless still be in fairly good working order.  For example, a dementia patient who has developed paranoia might still possess the skill to offer a bitingly accurate commentary on the caregiver's perceived failings. 

When the care recipient is a loved one, he/she is able to draw upon long term memory for ammunition to make arguments and insults all the more upsetting; the barbs become custom tailored. If a new acquaintance tells me I am a hateful person and always have been, I might be able to smile and respond with gentle humor.  But if my mother spews these words, the arrow pierces my heart. 

I'm always surprised by the hurt Mom is able to cause me by just a few well placed insults.  "Well," she says when I ask her for the third time to wash and dress for the day, "You have to get me to do what's most convenient for you, that's what you're like!"  I'm sure that when I was 14 and practiced diligent avoidance of household chores, these words had some basis in truth, but now the injustice and ingratitude of her mocking deprecation is beyond upsetting.

"I've given you ten years of my life, I don't always do what's best for me--I spend a lot of time thinking about what makes you happy," I protest (maturity has fled, drama reigns). 

"Ohhhhh poooorrr you.  Big of you to try to make me feel guilty," she says. 

And that's it.  My switch is flipped, I clamp my lips tightly closed over the angry words I'd like to speak, and I leave the room, closing the door firmly behind me.

The possibility of these kinds of caregiver/patient interactions are why someone who has suffered abuse in the past should not become a caregiver; dementia patients often have great skill in eliciting anger of the sort that creates intense emotion.  And when the care recipient is the former abuser, the chances for the tables to be turned increase exponentially.  My mother never harmed me out of anger when I was a child--although she often raised her voice.  To my shame, I sometimes am unable to keep from raising my voice to her now when she is sarcastic or rude.  If she had hit me in anger when I was a child, how might I respond to her now?

I have come to believe that if a parent was verbally or physically abusive in the past, that it is best for all involved if a non-emotionally involved party becomes the primary caregiver for that person.  There is no shame or failure in the acceptance that you are not the best person to care for your loved one.  God's love does indeed cover our sins and removes them as far as the east is from the west.  However, it is unwise to place ourselves in testing circumstances that could result in a tragic outcome for the physical well-being of the care recipient and the emotional stability of the caregiver.

Addend:  The impetus for this article was a news report I saw about elder abuse in nursing homes.  Although abuse is more likely to occur between family members with shared histories, I think it best if those who have suffered physical abuse avoid working closely with dementia patients as, say, nursing home attendants or hired caregivers.  Family members should be aware of the signs of abuse and advocate strongly for their loved ones.  Observe interactions between staff (including night staff) and your loved one and follow your gut feeling.  Meet every person who provides your loved one care.  I'm sure most facilities are safe.  But just as we teach our kids about the the danger of interacting with strangers even though bad things don't often happen, we need to be vigilant to protect our elderly from the danger of abuse, even if the rate of incidence is low. 

Hope in the Face of Alzheimer's

In September of last year, a Home Extension group asked me to speak to them regarding fear of Alzheimer's disease.  One member had been diagnosed with Alzheimer's and had begun medication, and others in the group felt fearful for themselves.  In my talk I addressed reasons we might have hope in the shadow of the possibility of a diagnosis of Alzheimer's disease for ourselves or for someone we love.

The antidote to every doubt and fear is faith in our Lord and Savior, Jesus Christ, and no avoidance strategy or method of coping has basis in reality apart from Him.  With Christ as our foundation, interesting concepts such as the possibility of "pleasant dementia" provide information that, grounded in faith, can help us to rest in Him.  

Because this was a book signing there is a brief introduction to each of my books.  If you want to skip this portion begin at minute 3!

Note:  In the conversion process from slide show to movie, the final few slides became out of synch with the voiceover.  The narration remains intact. 

Spring Will Come

I have a pretty severe case of winter/caregiving doldrums, and so I spent time this morning gathering some encouraging reminders in the form of favorite quotes that I've shared below.  Spring will come! 

A caregiving journey may seem long and arduous.  The following quote always reminds me that taking care of Mom isn't an interruption in my life plan, but a holy purpose for both my life and Mom's, ordained by the Lord:

Frodo: I wish the Ring had never come to me. I wish none of this had happened.

Gandalf: So do all who live to see such times; but that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world, Frodo, besides the will of evil. Bilbo was meant to find the Ring. In which case, you were also meant to have it. And that is an encouraging thought (Wikiquote.org).  The Lord of the Rings: The Fellowship of the Ring (film). (2014, January 14). Wikiquote, . Retrieved 15:48, February 13, 2014 from http://en.wikiquote.org/w/index.php?title=The_Lord_of_the_Rings:_The_Fellowship_of_the_Ring_(film)&oldid=1666615.

In Psalm 84 "The Valley of Baka" is translated elsewhere as "The Valley of Weeping."  I've shed so many tears over Alzheimer's disease, this horrid entity that has infiltrated our lives and taken so much away.  But if I shift my focus from what I have lost to how the Lord has provided for me through this time, I feel blessed, richly blessed.

"Blessed are those whose strength is in you,
    whose hearts are set on pilgrimage. 

 As they pass through the Valley of Baka,
    they make it a place of springs;
    the autumn rains also cover it with pools.

They go from strength to strength,
    till each appears before God in Zion" (Psalm 84:5-7). 

Caregiving entails many unseen and apparently unappreciated acts of service.  Discouragement is a constant danger.  Every day I need forgiveness for the ways I sin and fail, but this verse reminds me of the Lord's perfect knowledge of all I've given.  

"This is what the Lord says:'Restrain your voice from weeping
    and your eyes from tears,
for your work will be rewarded,”
declares the Lord'" (Jeremiah 31:16).  

I'm praying encouragement for my fellow caregivers who read these words. God is with us in our trial and we have hope through the certainty of His promise: winter will pass, and spring will come!  

"See! The winter is past;
    the rains are over and gone.  Flowers appear on the earth;
    the season of singing has come,
the cooing of doves
    is heard in our land" (Song of Songs 2:11-12). 

Faith Trumps Melancholy

TV commercials from pharmaceutical companies make me smile.  They feature idyllic scenes of a person who has taken the promoted medication and is now living happily ever after as a result, but all the while a voice-over warns of dire consequences that may occur as a result of ingesting that very drug.  The cautions are delivered in a quiet, soothing voice, as though our senses might be overwhelmed by beautiful visuals to the degree that we disregard warnings of occasional side-effects of things like paralysis, disease, and even death. 

Perhaps advertising executives need to understand a Biblical truth:  faith comes by hearing (Romans 10:17). If the senses were played like a game of rock, paper, scissors, what we hear would trump what we see. God created us with the capacity to believe in what we have not seen, then He planted the hope of eternity in our hearts. 

Yesterday morning during my devotion time the word "melancholia" came to mind.  I remembered a college Psychology class; "melancholia" was one of the four personality types put forth by Hippocrates.  Gloom and sadness are characteristics of this personality, and when the word came to my mind as from the Lord, I felt vaguely reprimanded, though no less sad than before.  But later in the day I was reading a novel that used that unusual word, melancholia, to describe a character.  Another character said something like this, "He fell to sorrow because he didn't have faith."

These words brought a flash of insight: when I stop believing that what God has promised is true, I sink to my natural personality type, an Oscar-the-Grouch kind of cup-half-empty melancholy. I'm not talking about clinical depression, which is a disease that needs medical intervention and can't be overcome by making a decision to believe (that would be like trying to cure physical starvation with beautiful music).  I refer to a personality type that, perhaps as a result of God-given gifts of perception and empathy for the suffering of others, is prone to gloom.  

If a commercial advertised the blessings of caregiving, the voice-over would warn of possible side-effects of heartache and loss of hope.  Caregiving truly does bring many blessings, but apart from faith in God's promises, the hard facts of caring for someone with dementia can bring the heartache of melancholy (particularly to those of us naturally predisposed to gloom).  The cure for this ill (and most others) is to look steadfastly at Jesus' face, abiding in Him through prayer, praise, and most importantly, Scripture.  Hearing the word of God as spoken to our hearts through the reading of His word offers a a choice, "Will you believe?"

When the answer is "Yes, Lord, I believe," melancholy gives way to the peace of faith.

***

^{Jesus prays for all believers:}  
  “My prayer is not for them alone. I pray also for those who will believe in me through their message..." (John 17: 20).  

"'...if you can do anything, take pity on us and help us.'

‘If you can’?' said Jesus. 'Everything is possible for one who believes.'

Immediately the boy’s father exclaimed, 'I do believe; help me overcome my unbelief!'" (Mark 9:22-24) 

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.