Mistaken Identities

Recently I attended a party given by a local family whose children had attended school with my children.  The adult daughter of that family, a young woman the same age as my daughter, greeted us at the door.  She resembles her mother, and for a brief moment I was confused.  The daughter is now about the same age as her mother had been when we'd first met years ago, and I stumbled just a bit before I greeted the daughter by her correct name.


In that moment of uncertainty,  I experienced just a taste of the kind of confusion my mother has to deal with every day.  I believe (please, Lord) that my confusion at the party was a normal side effect of being old enough to have known two generations of a family as they each progressed from childhood to adulthood.  For people with dementia, this type of normal, momentary mental glitch becomes magnified many times over.


For the past seven years my mother has struggled to remember whether I am her daughter or her granddaughter.  Before I had made that treacherous emotional transition from daughter to caregiver, I was devastated by this kind of confusion.  Just last evening she said to me, "Now, who is John married to?"  (John is my husband of 37 years).  Mom had her notebook in her lap and her pen poised to write down my reply.


I always say that I respond "properly" to Mom only about ten percent of the time, and this was one of those less-likely-to-happen responses.  I paused a moment, prayed to respond in a way that would protect her dignity, then replied,  "Well let's see, it's John and Linda, and Mindy and Brian.  Linda is your daughter, and that's me."  She was writing furiously to try to keep up as I spoke.  I leaned over and patted her hand.  I said, "That generational stuff is confusing when you get just a little bit of dementia, isn't it?"


She smiled and nodded, then, consulting her notes, repeated the information back to me, "So, you are Linda, and you're married to John, right?"


I said, "Yup, and we looovvvve each other!"  She giggled at my silliness, and all was well.


This is very different from the exchanges that took place early in our caregiver/patient relationship. Early on I would remonstrate with Mom for not knowing me.  I was likely to say things such as this:  "How many children do you have, Mother?  I'm your only child and who the heck else would be taking care of you?" And of course just beneath such a rude response were much deeper and hurt filled questions which went unspoken but for a long time fueled my actions and demeanor toward my mom:   "How could you possibly forget your only child?  Why don't you express gratitude to me  for providing you care, but just take it as your due?   Why do you often remember casual acquaintances better than you remember me?  How could you betray the relationship we've had by failing to recognize who I am?"


 I've come to understand that Mom's confusion about who I am  runs deeper than with other people because our relationship has changed so much.  We've undergone a role reversal.  She is no longer able to cook, buy presents, plan family gatherings, or any of a myriad of other acts of service she performed for me as my mother; thus many of her familiar ways of relating to me have evaporated.  Of course this is confusing for her.  She often thinks I must be her granddaughter, Mindy, because she recognizes me as a beloved family member, but the daughter she knew did not give her instructions about when it is time to bathe or take medication.


I really don't think we give dementia patients enough credit for the reasoning processes they utilize to make sense of an environment that is often puzzling for them.  Mom's reasoning probably goes something like this, "I recognize this girl as being dear to me, and I'm sure she is a family member, but this isn't how Linda acts toward me, so it must not be Linda.  Maybe it is Linda's daughter, Mindy, all grown up and taking care of me now."


Caregivers must learn to respond to hurtful behaviors from a clinical rather than an emotional perspective. It is a difficult transition, made easier by the recognition that although the rules of the relationship change, love remains. I am blessed just now because my mom still recognizes exactly who I am when I give her a hug and say, "I love you, Mama." 


There will likely come a time when my mother no longer knows me at all, but a hospice nurse who cares for dementia patients  once told me, "The ability to love and to receive love remains until the end of life."  As we continue this Alzheimer journey together, I pray for the strength to act toward Mom in love and to dependably and graciously receive the love she's still able to express.

The Rhythm of Our Days

Mom had picked up one of the Anne of Green Gables books and had recorded the title and author here.  She'd also spilled her water on the notebook!  

Routine is important for Alzheimer patients.  I remember during the early days of my caregiving journey that it was difficult to establish those very routines that would later provide my mother security and a sense of peace.  We both had challenges to face as we learned to be caregiver and care recipient.  Mom's challenges came because she could not remember, but my difficulties were mostly because I lacked experience and was learning as I went.  

It is a common misconception that Alzheimer patients cannot learn new information.  In my experience with my mother's Alzheimer's disease, I've found she is able to learn, but she requires many repetitions and visual prompts to do so.  Keep in mind that my mother is still in the-mid stages of Alzheimer's--approximately early stage 5.

Here are some of the ways we have established routines that have made my mom's days run more smoothly:  

• She receives her medication, meals, and snacks at about the same time each day.
• I use a large white board placed in her direct line of vision to record the day's events.  This helps her to remember that she has had interactions with other people.  Otherwise, she begins to feel that she might be neglected.  
• A clock and a calendar are very important for my mother's peace of mind.  And so these have been placed within her direct line of vision. 
• Easy access to a notebook and pen is a must.  My mother already had established the habit of journaling, and so this was not a new behavior.  Dementia patients are greatly helped if they can form the habit of recording the day's events.  Mom was in early/mid stages of A.D. when she came to live with us, and was able to establish the habit of keeping a running record of the day's events as a memory aid. 
• I've established a regular sequence of events for rituals such as dressing and bathing.  We follow this sequence every day.  Mom never remembers the sequence well enough to anticipate what she should do next, but she is able to remember that she can ask me.  Her initial resentment at having to take direction from me has dissipated over the years.  I'm her go-to information source now; I really think she has a similar relationship to me as I have with the Google search engine.  Anything Mom needs to know makes her think of me (sigh). 

When I first became Mom's caregiver, her resentment at needing my help was a real barrier to achieving positive interactions between us.  If the caregiver can remain calm and kind it's possible this initial resistance to accepting help will fade.  I've found that if I exude an attitude of calm confidence that what I'm asking Mom to do is best, that this often helps.  If I get irritated I may as well give up and come back later.  

 For me the rockiest days of caregiving thus far have been those early months of adjusting to one another in our new roles as caregiver and patient.  It took nearly a year for the adjustment to be complete.  During that first year Mom suffered a fall that broke her collar bone followed immediately by a bout of pneumonia.  Who would have thought that seven years later my caregiving duties for my mother would actually  be lighter than they were then?   There have been no more falls, and at 87 years of age, Mom is in good physical health.   I share this to in order to encourage new caregivers not to give up too easily.  Some dementia patients can experience improvement and adjust to a new living situation, given proper medication and time. 

Weddings and Other Slippery Slopes




Mom and I posed for a photo a couple of hours before Jonathan and Nicole's wedding ceremony.  Jon is Mom's only grandson.    

  I borrowed the title of this post from my daughter, Melinda.  She once wrote a blog entry entitled, "Birthdays and Other Slippery Slopes," detailing the emotional roller coaster of  family celebrations.

I've  thought of Melinda's blog post title often these past few months as we navigated the "slippery slopes" of the joyful but stressful days just prior to the wedding of our son and beautiful daughter-in-law, Jonathan and Nicole.  I was so worried about Mom because, for reasons not fully understood, holidays and other special occasions are often a catalyst for a downward turn in functioning for dementia patients. Emotion, especially emotion that recalls other very sad or very happy times, does a number on the Alzheimer diseased brain. 

Mom was diagnosed with Alzheimer's just a month after Melinda and her husband, Brian, were married seven years ago.  During the busy days preceding that wedding, Mom's dementia symptoms became more pronounced.On the day of the wedding she needed my aunt's help in order to style her hair and to make it to the wedding on time.  Melinda and Brian were married in March, and Mom moved in with us in early November of that same year.  She was no longer able to stand the stress and confusion of living by herself.  I've always felt that the emotions surrounding Melinda's wedding somehow triggered Mom's transition from mild dementia into the early/mid-stages of Alzheimer's. 

And so I was vigilant to be protective of Mom as this latest celebration approached.  I shielded her as much as possible from the hoopla surrounding this exciting, beautiful, emotional event, and felt trepidation on the day of the wedding as Mom fielded three separate caregivers who arrived at designated times to serve her a meal, fix her hair, and help her dress.

She came through like a champ.

She was cheerful and good natured.  She joked.  She smiled.  She seemed to enjoy the proceedings.  We brought her to the church for the three hours preceding the wedding and she smiled for many photos and apparently loved interacting with the bride and groom as they greeted her and coaxed her to her feet for a series of formal photos. 

Go figure.

Mom and her grandson, Jonathan. 

Alzheimer's disease can't be charted or predicted with perfect accuracy, and the course of the disease varies greatly from one individual to the next.  The past seven years have brought Mom improvements in nutrition, weight, and medication.  These things, in combination with a comfortable, generally predictable environment where she feels secure, have evidently combined to afford Mom the capacity to cope with the slippery slope of a wedding celebration. 

I am afraid of her next downward turn.  I am so grateful that Jon and Nic's wedding did not trigger that much dreaded transition. 

Here are a few more photos of the wedding:

This one's titled, "Oh my gosh, I'm dancing!!!"  Blessedly, my son is a gifted dancer and all I had to do was follow.  I didn't expect quite so many twirls and turns, though. 

They are so beautiful.  We are so blessed.  God is so good.  *Sigh. 

Prayer Trumps Intellect

Farmer John and me, dancing at our son's wedding.  My smile proves that happiness is possible even after doing something not very bright, such as locking oneself into a closet at a wedding reception. 

Years ago I watched a television interview with a famous movie actor. At one point in the segment, the host asked whether there was anything in day-to-day life that got under the actor's skin.  "What really bothers you?" the interviewer asked.


The actor answered tersely and succinctly, "Stupid.  I can't stand 'stupid.'  He leveled his piercing gaze upon the hapless reporter and paused a moment in order to heighten the dramatic impact of his words,  "Stupid really bothers me." 


And that was that.  The interview came to a close and I had the feeling that the actor's impression of the interviewer was probably very close to the sentiment he expressed in that one word, "Stupid." 


I've thought of this exchange often over the years, particularly whenever I do anything that is, well, stupid.


Like the time I drove really close to the railroad tracks in order to cautiously look both ways just as the bells began to ring and the arms descended.  I panicked, couldn't find the gear shift, and ended up with a three foot long scratch along the side of  our brand new Ford Escape from one of the guard arms.


Or the time, in an art class, that I thought "Versailles" was pronounced the way they do it in the Ozark Hills of Missouri, where there is a town of that name.  In Missouri they don't call it "Vair-sigh,"  but it is "Ver-sales", just like it looks.  I betrayed my hillbilly upbringing right there in front of a lot of very cultured art students. 


And then there was the moment just a couple of weeks ago when I managed to lock myself into a room sized closet during my son's wedding reception.  The noise of the crowd kept anyone from hearing as I tapped on the door.  I began to shout and finally kicked at the door repeatedly, until suddenly all 250 people in the reception hall fell silent, and with a sort of  unified crowd perception,  heard my cries for help.  My son-in-law unlocked the door and I emerged, red-faced, to the sound of laughter and applause. 


I could go on for quite some time with memories of times my lack of intellect or inability to think quickly landed me in an embarrassing situation.  I am certain that famous man I quoted at the beginning of this post would not be able to bear my presence for long.  Lots of times I'm just not very bright. 


But that's OK, because I have a hookup with the Creator of the Universe.  I almost feel sorry for people who, through their own grit, determination, intellect, and hard work, are able to gain success; only to see some not-quite-up-to-par sap like me experiencing peace and comfort I don't deserve, just because I prayed.  

 Most recently one of my near misses with disaster occurred when, after following the Lord's lead to give up my teaching job earlier this spring, I could not find a way to provide health insurance for my husband and myself . We are in our late fifties, and in a situation that would not have surprised someone who is better informed about the health care crisis in this country, I found that private carriers would not accept us, and business carriers would not recognize us as a legitimate small business since we are "just" farmers.  Furthermore, the premium quotes we had received were so astoundingly expensive that we could not afford them, even if they would accept us.  At three in the morning this past Wednesday, I fell to my knees and cried out to the Lord for help.  I received the clear impression that we already possessed both the funds and the solution to an insurance carrier that we needed.  I racked my brain and, being not bright as I've clearly established above, couldn't think where in our assets we possibly could find additional monthly income that would cover horrendously expensive insurance premiums.   

It is time to make this long story short, but here is the solution we found through a series of serendipitous discoveries that came, not by my savvy, but by God's grace.  I found that because I am over 55 and have more than ten years of service as a public employee,  that I can retire and begin to draw my pension.  I then found that as a retiree with more than ten years of service, by Kansas law both Farmer John and I can continue with the group insurance plan we've had for 22 years through the school where I worked.  

Godly wisdom is one thing, human intellect entirely another.  By God's grace I can participate in His wisdom and provision, even though I could fairly be categorized as "not quite bright" in the eyes of the world! 


Scripture:  "It was not by their sword that they won the land, nor did their arm bring them victory; it was your right hand, your arm, and the light of your face, for you loved them" (Psalm 44:3).  

What Lies in Us

I have never met a person I could despair of, or lose all hope for, after discerning what lies in me apart from the grace of God. Oswald Chambers, My Utmost for His Highest, June 17 reading

 A treatise on the innate sinfulness of human beings in general and this blogger in particular may not seem an appropriate subject for a caregiving blog, but stay with me.  Caregivers and their care recipients are human, and so sin is going to cause trouble in patient/caregiver relationships.  This post is about how the Lord would have us to deal with the sad fact of sin in the people we love.  Accepting the fact that we ourselves are sinful is the first step in this process. 

I've learned today that I really can't trust my own motives. During prayer time I was forced to the admission that my "selfless" mothering of my adult children is, to some degree, a cover for a need to assure that I am accorded the honor and loyalty I feel I need from them. 

I resisted at first, denying vehemently that there was any wrong in me in relation to my children, and then engaged in a sort of tug of war against the Almighty.  Guess Who won that contest?  Yes, I was finally convinced of my own black-heartedness as the following thoughts broke through my complacency: 

When you demand loyalty, love takes second place.  You do yourself a disservice, because your true desire is for your children’s responses to you to be directed by love rather than guilt-induced loyalty. 

Their sense of guilt when they fail to accord you adequate respect gives birth to resentment, which engenders a feeling of entitlement.  They sense that the negative feelings they harbor are your fault, and this justifies, in their minds, a demand for repayment from you. 

Appalled, I asked, "How do I make this right?"  

You do not make it right.  You are unable to fix what you have broken.  God is the healer of hearts, the repairer of broken walls.  Trust Him and stay out of His way.

Release your self-imposed sentence of making your life a sacrifice for your children.  You have accepted this burden as a sort of insurance against being abandoned; but see the terrible fear you have taken on along with your burden of service? You fear that when you are no longer able to be of service to them,  they will not continue to love you. 

You have confused loyalty with love.  Let go your demands for their loyalty, and leave their love for you to grow under the Lord's hand. 

Did you catch the sentence above that might make someone who cares for an elderly parent more vulnerable to the sin that has captured me?  You fear that when you are no longer able to be of service to them, they will not continue to love you.  Such astonishing demands have been made on my time and my life by my mother's Alzheimer's disease.  It is difficult for me to imagine anyone being willing to make this kind of sacrifice for me.  I fear being abandoned if  the same disease that has rendered my mother helpless should attack me.  My twisted sin-based logic would have me weave a web of obligation in my children's hearts that would provide insurance for me against disease-induced helplessness. 


Of course this attitude dishonors God.  The Lord is my strength and my provider; I need no further guarantee of future care than this.  It's time I release my children from the obligation to be loyal to me "no matter what." All I really need from them is their love, which, because God is merciful and covers my sin, I already have. 
*****************************************
My son's wedding is in six days.  He and his beautiful bride-to-be share a love for country music and also for swing dancing, areas of life completely foreign to me!  When the mother/son dance song was selected for me by a friend I thought, "Wow, that doesn't sound like me at all, but oh well."  At our one practice session, my son took me in his arms and, because he is so good at two-stepping, I found I could follow his lead and do a good enough job for the 3 minutes of the song.  The twangy, heart rending number we will dance to is called, "I Won't Take Less Than Your Love," by Paul Overstreet. It is amazing to me that the Lord provided this song for us weeks ago and only now do I understand; my son doesn't owe me a thing, but loving and being loved is the best gift of all.  You can listen to the song here. 

Following Christ's Example

During devotion time this morning my mind wandered to a scene from a science fiction movie my husband and I recently watched.  In this scene the hero is using his powers against an ugly and terribly frightening alien.  The alien has been assigned to kill our hero, but as the hero valiantly fights, he looks up to see his comrade in desperate need of help as she battles with a flying beast.  He makes the decision to turn his back on his own opponent and uses his powers to give aid to his comrade in her life and death battle.  He saves her, but while doing so, his own enemy revives and nearly finishes him off. 

I brought my mind back to my daily Bible reading with a sense of guilt for my inattentiveness, but then as I opened my heart and mind to the Lord, I realized why this movie scene had come to mind.  These past seven years as I've cared for my mom, I’ve turned my attention to the needs of another.  In so doing I’ve taken my eyes from my own dreams and goals; in fact, I’ve let go not only my wants but also some things that could be categorized as needs. It's interesting how that scene from the movie took root in my subconscious and then presented itself to me as an illustration of the sacrifices I've made for my mother.  

As caregivers we must attempt neither to fall to resentment because so much has been asked of us, nor to dismiss as being unimportant the things we've given up.  I've erred on both sides; in fact, I tend to vacillate between the two perspectives.   Some days you'll find me saying things like this:  "Mom is relatively easy to care for, and the Lord's been with us throughout this journey.  I have no cause for complaint."  


Other days I clench my jaw shut and seethe--yes, seethe with anger because I feel so unappreciated for all that I've done for Mom.  Seven years ago I cut my job to half time to take care of her, and then, this spring, at least in part because of the gentle withdrawal I began from duties at my job at the time of Mom's Alzheimer's diagnosis, I found myself with no real role to play for the coming fall at the K-12 school where I'd taught for 22 years.  I'd subbed and taught summer school for ten years before I was under contract, and a few years prior to that had attended high school at the same attendance center where I later taught.  Thus, walking away from my job entailed letting go of a place that had been a part of my life since I was 16 years old.  

When I walked into Mom's room yesterday morning she first called me by my daughter's name, then by mine, then felt confused and finally asked, "Now, who are you?"  I see that we are coming to the end of Mom's mid-stages of Alzheimer's and are poised for the final act.  And with this cursed disease who knows how long these final stages will take, and what new agonies await?  


I cried all this out to the Lord, citing before Him my grief over what I've freely given for His sake not only to Mom, but to others I love.  As I prayed, I wrote this reply as from the Lord to me and to every caregiver who reads these words:  

You made this commitment, Child.  You have submitted your will to Me for the sakes of these others you love, those precious ones I have loved first and best.  You have become a willing vessel for My love to bless the lives of others.  You are dying to self, and dying is not pleasant; but death must precede  resurrection.  You will yet see My goodness in the land of the living; allow hope to be kindled in your heart.  I will not leave you or abandon you.  I have seen your suffering, I have counted your tears, and I will not just “make it up” to you; I will bless you richly beyond anything you have earned. 

Whether the blessings God promises are for this world or for the next, in the words of the old hymn, "I know whom I've believed, and am persuaded that he is able to keep that I have entrusted unto Him against that day"  (from the Hymn "I Know Whom I Have Believed" at hymnsite.com). I can trust Him with this caregiving journey as well as with all I've let go in order to hang on tightly to Him. 


Scripture:  "I have no regrets. I couldn't be more sure of my ground—the One I've trusted in can take care of what he's trusted me to do right to the end"  (2 Timothy 1:12, The Message). 

"I know the one in whom I trust, and I am sure that he is able to guard what I have entrusted to him" (2 Timothy 1:12, New Living Translation).  

God is So Good

Amidst all the hoopla surrounding our plans for our son's rapidly approaching July wedding, our family paused to celebrate my mother's 87th birthday yesterday.  At one point during the evening my daughter, Melinda, said, "Let's take a four generation photo, Mom."  And so we placed three-year-old Daniel on his great grandma's lap, I scrunched my aging knees into an excruciatingly uncomfortable position in order to move closer to my loved ones,and our son-in-law, Brian, snapped the photo. 


The result made me realize I've not been seeing the blessings God has placed right in front of me.  I've been indulging a "Woe is me I'm so busy and stressed" state of mind, Lord forgive me!  


So this is me saying, "Thank you Lord for my many blessings!"  


I'm inviting you to do the same today.  Just take a moment with me now and acknowledge that God is in control of the present, He knows the future; and that all will be well.  Let's pray together today for our eyes to be opened to the blessings the Lord has placed right in front of us. 


Scripture:  
"From the fullness of his grace we have all received one blessing after another" (John 1:16).


"Come to me, all you who are weary and burdened, and I will give you rest" (Matthew 11:28).

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows" (James 1:17).