Wednesday, July 9, 2014

Bible Verses, Hymns, and Devotions for Alzheimer Patients

Ten years ago I began providing care to my mom, who was diagnosed with Alzheimer's disease in the spring of 2004.  During that time I recorded heartfelt prayers along with the Lord's answering solace here at this blog.  The blog was seen by an editor who asked me to write a book for her company.  The publisher named that book My Mom Has Alzheimer's: Inspiration and Help for Caregivers. I did not like this title at first, but then I realized: my mom does have Alzheimer's and the book does contain inspiration and help for caregivers!  

Almost as soon as that book was published in September of 2009, I felt the Lord's strong push to write a book of devotions for my mother and others who struggle with dementia. It is too easy to forget the spiritual needs of those precious care recipients whose physical needs overwhelm us while our own hearts are aching with grief of loss and burden of care.  And so I began rewriting devotions from My Mom Has Alzheimer's, this time from the patient's perspective. This was a valuable exercise for me as a caregiver, because it forced me to put myself in Mom's place as I attempted to view the world through her eyes.  

It is with a profound sense of having completed a task the Lord wanted done that I announce the publication of Beautiful in Each Season: Devotions for YouThe book is available as of today in both softcover (large print for patients who are still able to read independently) and as an eBook for the Kindle format.  I was able to hand the proof copy of the book to Mom today, and I just can't describe the blessing and relief I felt as she opened it and began to read aloud.  I am so grateful I accomplished this task while Mom is still able to benefit, and it is my prayer that others are blessed as well.  

The first few devotions in the book are available for preview at Amazon using the "Look Inside This Book" feature. Please pray with me that this book reaches those who can be helped by it!  I've included the back cover copy below: 

“People with Alzheimer’s aren’t dumb, they just have trouble remembering!”
Anna Ruth Williamson, Alzheimer patient since 2004.

The devotions in Beautiful in Each Season were written with respect for the intellect and spirits of those with dementia. The readings are straightforward but not childish in content, and are appropriate for independent or caregiver supported use. Because music transcends language and speaks directly to the heart, a few lines from familiar hymns are included with each devotion. 
Many of the conflicts that arise between people with dementia and their caregivers occur because two completely different perspectives must come together in order for harmony to exist. When the patient is a loved one, the caregiver faces not only an increased workload, but also new financial worries and the loss of emotional support as the relationship of the past is redefined. On the patient’s part, dementia has narrowed perceptions to the degree that there is little awareness or empathy for the struggles of the caregiver. The confusion and disorientation of cognitive dysfunction may result in suspicion and fear-based anger. When both patient and caregiver know and love the Lord, reminders of His steadfast love provide a common ground through which empathy and love can flow.
This book can be used either alone or in tandem with the caregivers’ devotional, My Mom Has Alzheimer’s: Inspiration and Help for Caregivers (Bridge-Logos Foundation, 2009).  

“As caregivers we must not allow our loved ones to forget God’s love”
Linda Born

Wednesday, July 2, 2014

Caregiving Decisions: Pray Through to Peace

The single most important edict for a Christian caregiver is this: "Pray through to peace regarding caregiving decisions."  Whatever decisions you make for your loved one, pray and ask others to pray during that vulnerable and emotional time following a diagnosis of dementia. 

Do not let any one source convince you of the course of action you should take, but be open to the Holy Spirit's direction through prayer, God's word, and counsel with Christ-centered mentors and friends. 

Be patient with a spouse whose anxiety over your loyalty and a desire to preserve the status quo may temporarily drown God's voice. Don't trust the direction given by a dementia patient who may, out of fear, make demands and utter threats.  Another scenario is a patient like my mother, who selflessly recommends what she assumes is best for her caregiver in the mistaken assumption that things will work out well for her no matter what.  In each of these instances, the caregiver must carry the burden and responsibility of decision-making by following the Holy Spirit's lead rather than human counsel. 

Interaction with a dementia patient who is also a loved one may require the following interpretation guide:
When an aging parent says, "I don't want to be a burden," she really means "I don't want you to resent me." 

When he says, "I don't want to disrupt your lives," he actually means, "I hope your love and loyalty to me make any sacrifice you must give seem inconsequential." 

When she says, "I don't want you to see me turn into someone you don't know," she means, "I hope you can stay close to me even if I behave badly."   
Do not release a loved one to death before they have died.  Do not reconcile yourself to suffering you might have prevented because "That's the way he wanted it."  Do not too easily accept a sacrifice an aging loved one seems willing to make on your behalf when the sacrifice ought to have been yours, not theirs.

We serve a God who will go to great lengths to ease the suffering of just one of His precious lambs (even though as you'll remember 99 others remained temporarily without a shepherd, though safe in the fold).  When we are safe in the physical and mental strength of our productive years, God may ask us to make sacrifices on behalf of one little old man or woman who can no longer make decisions and has nothing left to offer.   

"Precious in the eyes of the Lord is the death of His faithful servants" (Psalm 116:15).  It is human nature to recoil from the decline and dying of a loved one.  But God will not only sustain, but bless as we care for those He loves, even if the dying process should stretch over years of a journey through Alzheimer's disease. 

A first, instinctive response is to recoil from the upheaval of our lives that active caregiving requires, but if this is God's will for you, stand firm.  Beware voices that say, "You just have to let go,"  or "He's just trying to make you feel guilty," or "You have to live your own life."  Do not let go of anything God has not commanded you to release. He will silence the dissenting voices so that in the end, even they will acknowledge that God's will has resulted in blessing. 

One further direction: do not trespass against your own heart. If God has anointed you as the primary caregiver for a loved one, He will also instill in you the strong desire to provide care. There are those who will interpret that strong desire as being about you and your emotions when it is actually the response of your heart to the Holy Spirit's direction and God's will.  If you go against a Spirit-directed urge, you will break your own heart and quench the Holy Spirit within you. 

Stand firm in prayer.  Few things in life are so important as praying through to confidence over the decisions you make on behalf of an elderly loved one.  Do not rule out either the possibility that God may ask for an extraordinary sacrifice of time and service, or that you will need to lay your loved one on God's altar in the faith of release.  God will very likely ask you to do both these things.  But you must pray through to peace whatever decision you make so that you may have the very great blessing and reward of one who says to the Lord, "Thy will be done."  

Monday, June 9, 2014

Two Sides of a Coin

Our local bookstore hosted its annual Author Extravaganza last Saturday afternoon, and I signed up in time to be one of the 40 or so authors present.

The man seated next to me teaches creative writing a nearby university. When he saw the title of my devotional for caregivers, he told me he had written a play about Alzheimer's.  I asked, "From what perspective?"

He looked a bit taken aback and so I explained, "I wrote my first book from the perspective of one who has to deal with a parent's illness, but the book I've just completed was, as nearly as I could manage it, from the patient's perspective."

"Oh," he said, "Well, the play is about people who have to cope with someone else's Alzheimer's disease."

I would like to see that play.  After ten years of caregiving, I imagine I would relate to the humor and pathos of the challenges his protagonists face.  However, I've become increasingly aware of the importance of taking time to imagine myself in in the patient's role.  This is not a comfortable exercise, but it is a necessary one if I'm to maintain compassion and empathy for my mom.

For example, this morning Mom yelled at me when I opened her apartment door at 8:00 a.m., though I was bearing her morning toast and coffee.  "I have been waiting to hear from somebody," she spat.  "I'm isolated in here!"

The echoes of parental authority reverberate in my mother's anger, and so it is especially difficult to guard my heart against damage from her accusations.  I placed her breakfast on her lapboard, then delivered a stern lecture. "Mom, look around you.  There is music playing, the shades are open onto a beautiful day, and this apartment is comfortable.  Instead of getting angry I wish you would give me the benefit of the doubt and assume everything is all right."

However, when I came out of her room I took a deep breath and made a conscious effort to put myself in Mom's place.  She had gotten up a little earlier than usual and emerged from her bedroom to find there was no breakfast waiting on the table by her chair.  She could hear no sounds from our part of the house.  As far as she could tell she was alone without prospect either of human interaction or her well-loved toast with jelly!

My new book is a devotional for dementia patients who love the Lord. Because music triggers memories and speaks comfort even when language skills have faded, each devotion is linked to a well known hymn.  Many of the devotions talk about having patience with those who provide care, even when those people are unjustly cranky or rude (!).  All of them remind the reader of God's love, because no matter what else our loved ones forget, we must not let them forget they are beloved of the Lord.  If you know a caregiver who uses the Kindle app on a phone, tablet or laptop computer, send them to Beautiful in Each Season: Devotions for You.  The book will be available in paperback in a few months and when it is published it will be listed at the same Amazon link as the eBook.  

My mother reads her spiral bound prototype of this devotional each day, and I really do think it helps her cope with me!

Saturday, May 3, 2014

Prayer, Physical Touch and Moderate Exercise

When Mom is moody or angry, I've learned to look for some physical source for her discomfort. I've read that urinary tract infections are especially diabolical for dementia patients because the symptoms can go unnoticed by the caregiver who sees only behavioral changes and may not connect them to a physical ill.  My mom has not yet been bothered by UTI's, but for the past couple of weeks a spring cold has caused her to take a downward turn.  She has been uncharacteristically withdrawn and often angry.

She became caught in a dreamlike state a couple of mornings ago, dozing in her chair, dreaming, and then waking up angry and convinced she had stated her case but no one believed her.  She could not tell us what it was she thought we did not believe, but was stuck in a repetitive set of responses that had no apparent environmental trigger.  It was almost as though she couldn't hear me as I repeatedly asked what she needed me to believe.  She kept saying, "I have never lied to you.  Why do you think I am lying now? Why don't you believe me?"  

At one point she began to accuse and threaten, saying "You are going to pay for this.  This kind of thing can't go on without people having to pay for it.  You are going to be very sorry.  I just wish I could be around to see it."  I was able to stay very calm.  I prayed for her and asked others to pray.  Finally I was able to convince her to allow me to rub lotion onto her neck and back.  I then washed and applied lotion to her feet, and during these ministrations her anger receded.  But for the remainder of the day she was uncharacteristically withdrawn and quiet.  

I'm convinced Mom's daily walk is one of the most powerful therapies we've been able to implement for her.  During the course of her cold virus, the weather was unusually frigid for April and very windy, and so we couldn't take her outside.  For nearly two weeks she went without that daily ten minute walk, and became increasingly withdrawn and depressed.  I walked her around the house but she didn't get that daily dose of sunlight that I believe is so important.  

Just two days ago the weather moderated and Mom's cold symptoms receded, and so we walked both yesterday and today.  This morning it is as though none of the difficulties of the past two weeks had occurred; Mom made her own toast and dressed herself without assistance. Through this time three caregiving strategies have emerged as being vital for Mom:  prayer, physical touch and that daily walk. 

Mom is nearly 90 and is in the tenth year since her Alzheimer's diagnosis.  Each time she loses ground I take a deep breath and prepare myself for the next phase of our Alzheimer journey.  But for now, Mom has recovered from both her depression and her cold, and we are enjoying these green and sunlit days of early May.  

Tuesday, April 15, 2014

Ahhhhhhhhhhhhhhh!

I have had a terrible cold, and of course my mother can't remember I'm not feeling well.  I've been wearing a surgical mask when I'm in her apartment and this helps her remember to be kind to me, but last night I went into her room after she had gotten into bed.  At night her apartment glows softly with three night lights (my compulsive way of assuring that if one bulb goes out, she will still be able to find her way to the bathroom in the middle of the night).  The light wasn't sufficient for her to see my mask, however, and so without that cue she mistook my laryngitis for a refusal to answer her greeting.  I went about my business, emptying her trashcans and setting out fresh boxes of Kleenex,  when suddenly she erupted with an unearthly, horror-movie-worthy yell, someplace between the sound a zombie makes as it emerges from its earthen grave and the beastly vibrato of a mother cow calling her calf.  The hair on the back of my neck stood up and goosebumps erupted on my arms as I croaked, "Mom!!  Are you all right?"

Her only reply was to repeat her yell, "ahhHHHHHHHhhhhhh!!!"

I fell back against the doorframe with my hand on my heart, and laryngitis gave way to adrenalin:  "Mama!  Speak to me!  ARE YOU OK?"

Again she called, "aaaaHHHHHHHHHhhhhhh!"

I ran to the apartment door calling for my husband, wadded tissues drifting behind me from the open garbage bag still clutched in my hand.  He reached the door just as the sound erupted once more.

"What IS that?" he asked, eyes wide.

"It's Mom," I replied.

Encouraged my my husband's presence I ran back to Mom's bedroom doorway, but she shrieked once more and I lost courage.  John bravely strode around me right into the room, and stood at the foot of her bed.

"What seems to be the problem?" he asked

Mom immediately answered him in her normal voice, "I'm trying to drive your wife crazy because she wouldn't speak to me," she replied.

Mom has lived with us ten years, and never in that time has John spoken in a grouchy tone to her, not even once.  But this time a bit of impatience crept into his voice as he chastised her, "Now Anna Ruth, Linda and I are both sick, and we're doing the best we can to take care of you.  No more of that yelling, please.  It is upsetting to us."

"Whatever you say," said Mom pleasantly.

John went back to his T.V., and I walked to Mom's bedside.  "I love you Mama, and I'm praying for you, and I'm sorry you felt upset," I said.

I bent to pick up the trashcan that sits next to her bed, which placed my right ear about 12 inches from where Mom's head rested on her pillow.

"AHHHHHHHHHHHHHHHHHHHHHHHHHH" she replied.

I reeled away gasping, and fled.
*********
Because of her Alzheimer's, Mom often does not fully understand what is going on in her environment. When she receives cues that tell her someone is being rude, it doesn't occur to her that her perceptions might be inaccurate. However, my mother is intelligent and spunky, still able to even the playing field when her daughter the caregiver steps out of line.

I fervently hope this new weapon in Mom's arsenal does not become one she uses often.  I'm not sure my nerves can withstand the strain!

Sunday, March 23, 2014

Not Just Like My Mother

People have often told me I look just like my mother.  The resemblance that pleased me at age 8 caused chagrin during my teenage years, but by the time I had children of my own I had accepted that Mom's high forehead and pointy eyebrows were features I could share without undue angst.

As Mom has moved along on her Alzheimer journey I've found myself once more rebelling against the ways I am like her.  I do not want to become dependent on others as I age or cause my children pain through the irritability and vindictive anger that some dementia patients experience.  I don't want to break my daughter's heart by becoming gut-wrenchingly lost and needy.  And I don't want my son to draw a veil over his emotions toward me as men are inclined to do under the weight of heartache. 

As a result of Mom's dementia I have an unhealthy habit of analyzing my own cognition, and any minor memory glitch causes my heart to clutch with fear.  This must displease the Lord; in prayer this thought came: "You fear weakness, and this keeps you from recognizing your strengths." 

I remembered a study I read years ago about the unique personality traits of identical twins. Scientists were surprised at the differences in brain structure of these genetically identical individuals, differences that often became more pronounced as the twins aged.  I  found a study that showed when one member of a twin pair was diagnosed with Alzheimer's, the other developed the disease only about half the time.  I am my mother's daughter, not her twin, and so the correlation between us may be even lower;  just because she has the disease doesn't mean I'll receive a similar diagnosis.  And no matter what the future holds, my path will not be identical to hers. 

There are many reasons to be happy for the ways I'm like my mother. I feel gratitude toward her for my faith in God, which lived first in her.  I admire her years of service to the Lord, and I seek to emulate her ministry to youth and her heart for the elderly.  My mom was and is a person worth admiring, but I am not identical to her either in my strengths or my weaknesses.

I am uniquely me, uniquely loved of the Lord, and I have a life path to follow that is all my own.  Even though the resemblance between us is strong, I am not just like my mother. The only perfect,  one-to-one correlation between Mom and me is that the Lord's presence accompanies each of us on our uniquely individual life journeys. 


 


Wednesday, March 12, 2014

Praying for Strength of Heart

Mom's Easter Tree

I am a former teacher, and no longer have access to classroom bulletin boards. Nowadays my mother's apartment receives the benefit of my pent-up longing to decorate something--anything-- with seasonal cheer.  This is a happy situation for my mother, because one of the blessed aspects of her dementia (in its pleasant manifestation) is her sincere appreciation for anything lovely.  She rhapsodizes over her Easter tree:
Mom:  Linda, don't you think this tree is just absolutely beautiful?
Linda: (modestly) I'm glad you like it.
Mom: (has forgotten Linda decorated the tree, and misinterprets modesty for lack of enthusiasm) Well!  Don't YOU like it?  (accusing look)
Linda: I...I'm the one who put it there.
Mom:  Oh.  Well.  Linda, don't you think this tree is just absolutely beautiful?
And so we go, repetitively but happily.  Providing Mom with pretty things is something I do well.

But here's what I'm not good at: I do not like to sit down and visit with my mother.  Her time on this earth is coming to a close, and the inevitability of losing her oppresses me.  Connecting with her emotionally is painful, because it reminds me of what I've lost and of how difficult that final blow will be.  In her happy phases she stares at my face adoringly, as though I am her sun, her moon, and her stars, and this is uncomfortable.  I feel almost angry when she chatters along very nearly like her old self, expressing concern for me as she used to before the polarity of energy between us reversed so that I am now the one who takes care of her.  She has no memory of her irrational times; the 911 call (because I didn't hear her request for crackers),  her unjust sarcasm, or the vindictiveness she expresses when I insist she bathe or take a walk.  I sometimes feel like a child who has been abused; longing for the parent's love but wary of mood swings, with a layer of anger underneath.

But I am not a child, and I have not been abandoned.  My mother is not abusive, she is ill.  And I am aware of the dangers of burying my heart (see yesterday's post).  Hiding from my mother will make the final parting more difficult, not easier, and repressing emotion can be harmful to one's health.  And so this evening I pulled myself up by the emotional bootstraps, and went into Mom's apartment just to visit.

She looked at me adoringly, as though I were her sun, her moon, her stars. She chattered along very nearly like her old self, expressing concern for me. I didn't recoil, or make an excuse to leave.  I allowed myself to feel loved, and expressed love to Mom in return.

I will sure miss my beloved mother when she is gone, but I don't have to miss her yet.  I pray for strength of heart to face the emotion of still loving and being loved by my mother. 

"My flesh and my heart may fail,
But God is the strength of my heart, 
And He is my portion forever"
(Psalm 73:26).