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).

Monday, March 10, 2014

Don't Bury Your Heart

I watched Once Upon a Time on Sunday evening, and during the course of the show the evil queen, played by Lana Parilla, decided to bury her heart (in case you haven't seen this series, some of the characters can magically remove their own hearts and those of others).  The queen was in a great deal of emotional pain because she had been separated from her son and would never see him again.  She decided it was easier to feel nothing than to endure the pain of grief.

The symbolism is obvious isn't it?  Most of us prefer to bury hurt rather than face it, but I suspect that emotional detachment may be a contributing factor in the development of dementia. I am thus very interested in learning to cope with emotional pain in the healthiest possible way.

Apathy is one of the early warning signs of Alzheimer's, and in the year before her diagnosis, my mother did indeed become reclusive.  This isn't unusual behavior for dementia patients and may be due mostly to the confusion and embarrassment of memory loss, but another force was at work for my mom.  She had been shattered by the emotional blow of nursing my dad through his battle with lung cancer, and his death signaled the beginning of her downward spiral into dementia.  I'm convinced there was a connection between emotional trauma and Mom's decline. 

We can't avoid life trauma, but I wonder if there is a way to keep from burying our hearts in order to escape from the pain?

As a Christian it is too easy to be trite: keep your eyes on the Lord, don't turn away, and He will see you through.  But when God has allowed heartache and grief, it is instinctive to close our hearts to Him.  We can't accuse the Almighty, but how are we to cope with a God who allows such excruciating sorrow?  It is a difficult truth that our only hope of deliverance from the pain of grief lies in the arms of the One who allowed us that grief.

In the face of my own tendency to withdraw from painful emotional events, it may seem odd that my best comfort comes through a quote from Mom, "I used to try and let go of Him, but He never let go of me."  It is a great comfort for me to observe the Lord's faithfulness to my mother.  He has provided for her compassionately, faithfully, and abundantly through her long journey through Alzheimer's, and though I hope and pray it is not necessary, I am confident He would do the same for me. 

I believe it is worth a fair amount of effort to face grief head-on and resist the desire to withdraw into detachment.  However, it is a blessed relief to understand that although the world and it's sorrows may cause me to let go of the Lord, there is nothing that can break His hold on me.

"...if we are faithless,
    he remains faithful,
    for he cannot disown himself"
(2 Timothy 2:13).

"What can come between us and the love of God’s Anointed? 
Can troubles, hardships, persecution, hunger, poverty, danger, or even death?  
The answer is, absolutely nothing" (Romans 8:35). 


 

Sunday, March 2, 2014

Conversation

Negative emotions are a job hazard of caregiving, but when we bring those emotions to the Lord He knows just how to provide what we need, be it correction, encouragement, or a call to repentance. The most important strategy to remember in dealing with resentment is this:  always bring it to the Lord!  Otherwise it will fester into self-condemnation, anger, and eventually, rebellion.

I record my prayers in the form of conversations between the Lord and me, and in my ongoing commitment to avoid portraying myself as a never-frustrated, always-perfect-and-Godly caregiver (!), I've chosen to share the interchange below:
Linda (tattling): Mom chose to stay in bed after I brought her coffee and told her it was time to get up, and just now, an hour later, she called to ask me to warm her coffee. I told her I'd get there when I could, but I feel angry. 

Lord: She has Alzheimer’s.  The message she receives from an angry tone of voice is that you don’t care about her. 

Linda: (mad because the Lord doesn't say "There, there you poor thing") She treats me like a waitress!  It isn't that she can't get out of her chair or doesn't know how,  it's that she is too lazy to go to the microwave and heat the coffee herself!  She treats me like paid staff rather than a beloved daughter.  I hate that and I am angry over what she has become.  How am I supposed to bear this?
(Pauses, recognizes anger has caused overstatement of what's true, tries again...)

It is just incredibly frustrating.  She is rebellious about getting out of bed when I tell her it is time.  So she lies there.  Then she forgets that she has been rebellious.  After I've coaxed and called several times she finally comes out and her coffee is cold.  So she calls me to heat it. 

She closes her mind to any kind of logic path.  It isn’t that she’s unable to follow me cognitively, its that the instant she receives a whiff of the fact that she’s being scolded she goes on the defensive with those infuriating, sarcastic, pre-packaged replies: 

“Oh, I must be a really terrible person”
“Well you have to do whatever is best for you”

It is infuriating.  I hate being manipulated by her sin, and understanding what's happened to her makes me hate it even more because I see myself in her.  I am terrified of becoming like her in her helplessness and especially in her way of inviting rejection as she does when she's sarcastic and rude. 

Lord:  And yet you love her. 

Linda:  I love her, but she can drink cold coffee.  (Pauses...sees a mind picture of Christ bringing coffee to Mom). 

(Sighs resignedly...) You would take her a hot cup of coffee. 

Lord:  I would. 

Linda:  You would bend to her level and laugh love and camaraderie into her eyes and make her feel beloved. 

Lord:  Yes. 

Linda:  BLAHHHHHHH!!!!!!!

Lord:  Don’t go in guilt, or because you feel manipulated.  Let Me love her through you, and you will be blessed as well. 
 With that picture of the Lord loving Mom with His kindness fresh in my mind, I took hot coffee to my mother.  She had dozed off in her chair with her cold coffee mug tilted at a precarious angle in her lap, and so I visited with her while she sipped the new, hot beverage in order to keep her awake and safe from a spill.  She said, "You are so good to me, I am so blessed."

Well...not exactly.  The Lord is the One who is good, and He blesses my mother through me and sometimes despite me.

God doesn't ask perfection of us as caregivers, only humility to continue to bring our failings and frustrations to Him.

Prayer:  Lord grant me humility to respond as You would respond to my mother.  And Lord, I thank You for her, because in so many ways her presence here blesses me still.  I'm truly grateful for this unexpectedly long goodbye; grateful for this extension of time to have my mother.  Thank You, Lord, for my mom.   

Friday, February 28, 2014

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).  

Friday, February 21, 2014

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.