New Year's Caregiving Resolutions

My mother was diagnosed with Alzheimer’s disease nearly eight years ago and has lived with us for seven of those years.  I’m always amused when people say, “I couldn’t do what you have done.”  The truth is that apart from divine help there’s no way I could do what I’ve done either.     My theory is that since the only materials the Lord has to work with are weak and imperfect human beings that He’s sort of used to filling in the gaps.  Let’s just say that with Linda wearing the title of “caregiver,” the Almighty has had His work cut out for Him.

These past eight years I’ve learned the truth of this statement: when God has a plan, we can trust that it is a good plan; and that He will help it to be implemented.  It was His plan for me to become my mother’s primary caregiver, and I haven’t done the best I could, I’ve done the best that God can do through me.  And so things have gone pretty well.

This is not to say that I’m not adept at blocking the Lord’s good intentions, and so I’ve written a few New Year’s caregiving resolutions: 

1.  I will not be jealous of my mother’s affection for the cat even though I’m pretty sure she likes the cat best. 

2.  When I can’t think of a word and my mother instantly supplies it for me, I will not lapse to morbid fears regarding my own cognitive functioning. 

3.  I will spend more time being grateful that Mom is still with us and less time worrying about when she will leave this world for the next.  God is in control. 

4.  I will stop worrying about whether or not I will get Alzheimer’s.  God really is in control. 

5.  I will exercise and watch my diet so that I can lessen my risk of getting Alzheimer’s, but I won’t obsess about it because God really and truly is in control. 

6.   I will think of new ways to make sure that Sandy (our respite caregiver) knows how much we appreciate her. 

7.   I will stop explaining to store clerks that the Depends I’m buying are not for me. 

8.  I will spend more time just sitting with my mother and enjoying her conversation, which is still witty and spiced with nuggets of wisdom. 

9.  I will waste less time feeling sorrow over what has been lost and more time being grateful for what we still have. 

10.  I will thank God daily for my co-caregiver extraordinaire, my husband, even though I’m pretty sure Mom likes him best. 

On Feeling Invisible

As a caregiver do you ever begin to feel invisible?

Sometimes it seems to me that my own needs, worth, dreams, and desires have become not only invisible, but unattainable; crushed beneath the weight of the needs of others. My mother, former champion of everything Linda, no longer sees me as the object of her affections; I am now the meeter of her needs.  "What would I do without my Linda?" she asks, smiling seraphically. And then,  "Honey would you get me some coffee (Kleenex, an afghan, some crackers, sit down and talk, come see me more often, etc. etc. etc.)?"

This is not who my mom was pre-Alzheimer's. She is not being lazy or selfish.  "In Alzheimer's disease the ability to ask for help outlasts the ability to perform the multiple steps required to carry out a task for oneself."  That last sentence is straight out of the PowerPoint presentation I've given to several groups in the past couple of years.  I wrote those words and I know they are true. 

But I am caught in that "sandwich generation" time of life, a time when I consistently am called to place the  needs and desires of others above my own.  Resentment and bitterness are dangerous snares for those who feel they've been made invisible through caring for others.

This morning I realized that I've once again fallen to resentment, but not toward any human being. Resentment and anger toward the Lord have crippled my walk with Him of late. I finally confessed this to Him. I feel like the middle child who is flanked by a more accomplished and worthwhile older sibling on one side and a cuter and needier baby on the other.  Ignored.  Invisible. 

Here are the thoughts that flowed through my mind  in the wake of my confession:

God knows you completely.  He has accepted you, and He loves you.  He loves you because you belong to Him; you were sculpted by the artist who is perfect and all He creates is good.  You have resented the feeling that you are nothing apart from Him because you know you are good only because of Him.  That is true, but only in the sense that a perfectly cut crystal is not beautiful if there is no light.  He is your light, there is no other who can illuminate you; all other so-called lights are either counterfeit or so inferior that they are scarcely light at all.  Apart from Him, you can do nothing, but in Him, you are beautiful; don't you see this precludes pride and creates gratitude?  It isn't so much that you are nothing without Him as it is that you are invisible apart from Him. There is tragedy in the thought of a beautiful jewel trapped in darkness. Stretch out your arms in the warmth of God's light, and rejoice in the fact of the beauty He has provided you, beauty that is of God your creator; rejoice in what He has wrought in you by His hand, rejoice in His light.  


I don't need my mother's appreciation or approval. I don't need the attention and applause of human beings at all.  I can serve because I am loved by my Creator, who saw what He made and called it "good." When I abide in His light I can bask in His approval, and that's all I need.

Becoming a servant offers the opportunity for me to rid myself of pride and to emulate the Lord Jesus Christ. It means reflecting His light and giving up the attempt to shine with a light of my own.  It means putting the needs of others ahead of my own.  Frankly, I'm not equal to the task.  But the blessed fact is that when I come to the Lord and with tears of grief over the demise of my own carefully constructed plans for the future yet say, "Thy will be done," He goes to work in my heart and mind.

Sometimes it just takes my pea brain awhile to get on the same page.  I'm here, Lord, and I'm willing to be made willing to give up my rights to myself in order to be more like You.

One of those Caregiving Weeks...

Yesterday was "one of those days" that followed immediately behind "one of those weeks" in my caregiving journey.  Mom had been crotchety and critical, and my store of patience and kindness were at an all time low.  I am sorry to say I had sunk to the level of feeding her bad attitude with a queen sized bad attitude of my own.  I'd stopped bothering with such niceties as a cheerful smile or kind and cajoling words of encouragement and love, and thus was feeding Mom's determined belief that she was not being treated well.  I told my husband that she acted as though she believed herself to be paying for service in a luxury hotel and that she was being cheated because the workers  in this place just were not up to par. 


Last night I went into Mom's room to deliver her evening snack.  I was emptying her trash cans when I noticed she had thrown her head back in a somewhat dramatic looking pose and had one hand limply draped across her brow.  I thought, "Oh for goodness sake."


"What's wrong with you?" I snapped. 


She sat up straight, surveyed me and said, "I was praying for you!" 


I could tell she was telling the exact truth, that she had noted my grim expression when I entered the room and had surmised that I needed prayer.  She was right. 


I laughed and apologized, then said, "Well, maybe you'd better continue on." 


She laughed too. I was humbled by my mother's prayer for me. 


Alzheimer's shrinks the world of its victims.  When memories become like isolated and disconnected islands, the patient has only the moment she is in from which to draw conclusions about her circumstances.  Those conclusions are going to be inaccurate much, if not most of the time.  A good caregiver understands this, and ministers to the patient in the moment she is inhabiting, soothing fears and gently reshaping inaccurate impressions. This week I'll be praying for the strength and wisdom to rise above petty irritations and to be the good caregiver my mom needs! 

The Fear Stops Here

Note:  I've posted the entry below here at my caregiving blog because it has to do with fear, and for most caregivers, learning to deal effectively with the discomfort of fear is a necessity.  Fear arises because of uncertainty regarding the the future. Most of us have had to grapple with fear of falling to the same disease that has incapacitated our loved ones, and we fear being so overwhelmed by responsibility to others that our own hopes and dreams are smothered.  The story below is, essentially, the story of my life as a fear filled person, and of how God has been so gentle with me.  I am being gently led to freedom from fear. 

I am afraid of anesthesia.  The fear goes outside the normal realm of dread that precedes surgery or a medical procedure requiring sedation.  I experience a physical sensation of pressure  reminiscent of the feeling of the mask that was pressed over my 7-year-old face a half century ago for a tooth extraction.  The hallucinations I experienced with that mode of anesthesia were so horrendous that in the months following I suffered what we now call post traumatic stress.


Since that time I've struggled with fear, and not just fear of medical procedures.  Fear can't be kept in a tidy compartment; it is just extremely difficult to manage.  I started out with fear of the dentist, and this expanded to include all things medical.  After awhile the list of things that frightened me grew. 


I've managed over the years to appear relatively calm when circumstances force me to a hospital or the dentist for treatment for myself , but the story was different when the procedures involved my children.  I'll never forget my daughter's first (and thus far only) filling.  She was not quite seven-years-old, approximately the same age I had been when I'd  had my own negative experience in a dentist's office. Sitting in the examination room with my daughter as the dentist's drill whined, I came as near to fainting as I ever have. I was seated on a stool that had casters on the bottom, and as I lost consciousness the stool began to roll out from under me.  I regained control just in time to keep myself from hitting the floor, and no one noticed my gymnastics. To make matters more interesting I was largely pregnant at the time.  The office staff at that dental office never knew how close they came to having to deal with an unconscious pregnant lady blocking traffic on the examination room floor. 


My children were mostly healthy growing up and neither of them needed anesthesia for surgeries or dental procedures, thankfully.  But next week my 3-and-a-half year old grandson is scheduled to have his adenoids removed and ear tubes inserted. 


I am amazed at the intensity of the fear I'm experiencing on my grandson's behalf.  Fear does not take the Almighty God into account.  I've walked with the Lord long enough to recognize the difference between a stop He's placed in my spirit and the Holy Spirit's nudge to to move forward.  When I have a "move forward" signal from the Lord but nevertheless stand frozen and paralyzed with fear, I know I'm off base.  That's what has happened here.  Everything from expert advice to my own deep awareness of God's nudge to go ahead with this procedure have been in agreement.  The only discordant note is my fear. 


Shortly after my daughter told me my  grandson would be undergoing this procedure, I became extremely ill with a stomach upset.  The oddest thing happened as I lay on the bathroom floor in between bouts of illness; as I drifted in and out of a semi-conscious state between sleep and awake, I once again saw the terrifying hallucinations I'd suffered as a child when given anesthesia.  I did not give way to fear, but held to the sure knowledge I've gained over the years that God is with me no matter what.  My head hurt horribly and at one point I wondered if I was having a stroke from the stress and strain of being sick, but even that thought did not bring panic. When the illness had passed, I felt the Lord's gentle approval.  I had not turned back.  He'd shown me that even in the midst of suffering that I could remain true to Him.  I understood that He was saying, "It is time to give up this fear that has tainted your walk for so many years."  Not only is the time right, but I've finally been strengthened to the point that I am able to give up the fear.  A hidden lesson here is to be very gentle with those who are afraid and weak (even if that person is you!).  Being strengthened takes time, even when the strengthening process is being directed by God's hand. 


As I convalesced, the Lord led me to watch two current superhero movies.  I just felt this persistent nudge to watch these movies and so went ahead and paid the rental fee to watch them on pay-per-view, which I  rarely do just for myself.  The first, The Green Lantern, contained a quote that spoke to me, paraphrased here:  "You were not chosen because you are not afraid, but because you have the courage to overcome your fears." 


For the Christian, faith in Christ overcomes the power of the enemy.  "This is the victory that has overcome the world, even our faith" (1 John 5:4).  Our courage comes from belief in who He is. 


I then watched Captain America.  Before the hero is zapped into a buff and strong superhero type, he is short, skinny, and physically weak.  As a test of character, a dummy grenade is thrown into a group of soldiers in training of which our hero is a part.  The soldiers scatter but this tiny little wimp of a person falls on the grenade, curving his body around it, motioning everyone away.  When I saw this scene the Lord spoke to me, "I know you are not strong, but I will enable you to contain this fear and keep it from poisoning anyone else."  And so I've prayed for strength to do that.  It has been hard. 


A few days ago my daughter called and her voice was trembling a bit as she asked,  "Do you think we are doing the right thing, Mom?" 


"You are being courageous to do the right thing for Daniel although it is difficult for you," I replied.  "This procedure could help him to breathe better and may prevent him from learning problems that can arise from sleeping poorly.  God will bless him whether he undergoes this procedure or whether he doesn't, but the only thing that would keep us from choosing the path of greater blessing is our fear.  How much better to place our trust in the Lord and move forward." 


When I hung up my heart was pounding and I felt physically ill.  Spiritually I'm a 98 pound weakling.  But I am a 98 pound weakling who knows in Whom she has believed. 

Scripture:   “But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture" Malachi 4:2, New Living Translation

 

Don't Borrow Grief

Today I attended the funeral of a close friend of my mother's.  In addition to being my mother's friend and prayer partner, Kathleen was the mother of one of my high school chums; and I was in her home often during my teenage years.  I remember card parties, platters stacked with her special chocolate chip cookies, and most of all, her kindness.  Kathleen was a Christ-centered woman who shed the Lord's light on everyone who came within her circle of influence.  I loved her.  

During the service I suffered a sense of claustrophobia.  When they brought the casket in my knees went weak.  I felt there wasn't enough air in the room.  I felt nauseated.

I cried in the car on the way home and was mean to my husband.  I told him that when my mother died he by golly had better be nicer to me than he was being right then.  He gazed at me with an absolutely astounded look on his face but said nothing.  I could hear him thinking, "What in Heaven's name did I do wrong now?"

I came home in a vile mood and began a text conversation with my cousin, Pam.  Pam is a baptized in the Spirit Christian who also is a social worker, is trained as a health coach, and has worked with Alzheimer's patients.  Plus that, she loves me.  All caregivers should have a Pam to turn to for counsel and care; she is a wonderful blessing to me. 

After a few texts regarding my husband's lack of empathy Pam explained, "Men keep things in boxes.  One event has little to do with another.  Women weave webs of connection.  He had no idea that you were relating Kathleen's death to your mother's."

Well, that made sense.  But I still wasn't happy.

A few texts later Pam said, "Take the following or leave it as the Lord guides you, but..."

"Do not borrow tomorrow's grief today. The Lord gives dying grace to the dying AND to those left behind. He gives it when it is needed, not when we borrow the grief from tomorrow..." 

 I trust Pam's analysis of this subject because she was holding her husband's hand when he went home to Jesus at age 51, having succumbed to esophageal cancer. 

The gentle peace that came with her words affirmed that this was indeed a word from the Lord.  I felt a confidence that when my mom goes to glory that I will be given what I need to walk through the valley of the shadow of her death.

Scripture: My life verse:  "So do not fear, for I am with you;  do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand" (Isaiah 41:10).

Farther Along We'll Understand Why

Sometimes a little bit of imagination gives us a closer approximation of reality than facts.  I'll explain how this pertains to Christian caregiving in a moment, but first I'd better mention a few of the difficult facts of a caregiver's life.


One of the great challenges of providing care to a dementia patient who is also a loved one is the sad and difficult fact of changing relationship roles.  It is a daily challenge to release the parent (spouse, child, sibling) you once had, and accept who that person has become.  And it is an even greater challenge to respond to that person from the perspective of a caregiver rather than taking  a loved one's negative comments and behaviors as blows to the heart.  Sometimes it is nearly impossible not to react to a hurtful situation based on the relationship roles of the past rather than to respond from a caregiving perspective.  


Here's an example:  My mother insists upon eating all her meals in her chair.  When she is finished with her meal she stacks her plate, cup, and silverware on the table next to her, and the next time I come through, I pick up the dirty dishes.  Now, Mom always has a bottle of water by her chair.  She has gotten into the habit of giving the cat a drink of water from this water bottle, usually by filling whatever dish or container is available to the brim with water.  Cats love falling water and Kitty has learned that mom will pour water for her if she begs for it.  


Problem is, Mom is adept at filling a plate or saucer to the very edge with water so that it is invisible, and like Charlie Brown and the football, I never learn.  I come rushing through preoccupied with some task that needs my attention elsewhere, scoop up Mom's dishes---and water goes everywhere.  It is truly amazing how much water one of these small vessels can hold.  


I tried being extremely vigilant to remove Mom's dishes the instant she finished a meal.  She then began giving the cat a drink from the lid to her water bottle.  After awhile she would replace the lid onto the bottle, and drink from it happily for the rest of the day.  Ewww.  Now what to do?  I can't take away her water! 

It is hard for me to avoid the feeling that Mom doesn't care how much trouble she causes me, does not listen or respect my repeated requests that she not give the cat water at her chair side table, or even does this on purpose just to aggravate me.  If she was the Mom I had 25 years ago and behaved like this, all these things would be viable possibilities.  But my mother's cognitive processing and ability to remember have been severely damaged by Alzheimer's disease.  It isn't so much that she isn't the person she was, but that my mother, whom I love, has suffered brain damage as a result of a disease.  I don't like people to make comments such as "That person isn't my mother."  I think this is an unhealthy (and unkind) way of detaching emotionally from a loved one.  My mom is a victim of Alzheimer's disease.  I'm not going to detach from her.  


But this very commitment I've made not to detach makes caregiving painful at times.  


Now.  Back to the imagination versus reality statement at the beginning of this post.  The Lord has provided me a way to think about my mom's Alzheimer's that has helped.  I know that it isn't exactly accurate, but the fact of the matter is, we can't see clearly things of the Spirit with exact accuracy.  We can't read God's mind or fully understand the workings of His ways.  But if we will pray for the Lord to enlighten our imaginations with His Holy Spirit, we can arrive at a closer approximation of spiritual truth.  I've used this strategy to good effect on my caregiving journey.  


When I felt Alzheimer's to be a tragedy and the assignment to provide care to my mother as being a ball and chain around my ankle; this prayerful, imagined dialogue between my mother and the Lord helped me: 

Lord:  Anna Ruth, I'm going to ask something difficult of you, but it will bless your beloved Linda greatly.  
Mom:  Anything, Lord, anything for You, anything for my Linda.  
Lord:  I'm asking you to accept a journey through Alzheimer's.  If you were to come home to me suddenly, Linda would be greatly damaged emotionally and would need years to recover.  A gentler leavetaking will enable her to release you by stages.  And, as a bonus, she will learn patience, long suffering, and humility; all traits that she badly needs and is now lacking. 
Mom:  If it will help her...
Lord:  It will.  
Mom:  All right Lord.  I can do anything with you at my side. 

 A flight of fancy?  Probably. But I believe this flight of fancy has given me a closer understanding of my mother's heart and the Lord's great love than any other way of thinking about this Alzheimer fiasco has done! My mother had (and has) many aggravating faults, as does every human being; but I never once in my entire life have doubted her love for me.  Although she has Alzheimer's, my mother still loves me.  That isn't going to change, no matter her outward behavior.  God, in His perfect wisdom, loves me.  And I know He will work this Alzheimer journey to my mother's blessing and mine, and through the power that enables Him to bring everything under His control He will work everything out for our good and His glory (Philippians 3:21, Romans 8:28). 


When I spilled water on the library book on Mom's side table this morning, I smiled at Mom and said, "It's ok, I'm figuring this out!"  She smiled back. 

Mom:  I hate to do that water trick one more time, Lord, it's hard on my girl. 
Lord:  She needs to learn patience.  She will be blessed. 
Mom:  OK, then Lord.  But when we all get to Heaven you'll explain this to her, right?  
Lord:  Absolutely. 

It's ok, Lord, I think I'm getting it.  Praise Your Name!  
****************
Here are the lyrics to the chorus of the wonderful old hymn Farther Along:  

Farther along we'll know more about it
Farther along we'll understand why
Cheer up my brother live in the sunshine,
We'll understand it  all by and by. 

Praying blessings for you today, my fellow caregivers, 

In His Love, Linda

Scripture for Caregivers

 My heart goes out to those who are seeking encouragement from Scripture as they transition into the role of caregiver for a loved one.  I want to comfort with the comfort and help God provided my mother and me as we faced this difficult transition. 

Below you'll find selected Scripture references for passages used in my book, My Mom Has Alzheimer's: Inspiration and Help for Caregivers. 

I have linked the references to Biblegateway's NIV version of the Bible.  You can of course go to Biblegateway yourself and look up the passages in the version of your choice, or use your own Bible.    

I pray these verses provide  you comfort and strength in your caregiving journey.  I recommend you begin with the references from the Psalms.  May the eyes of your heart be opened to receive the strength and support the Lord has for you today.   

1 Cor. 1:9

1 Cor. 13:4-7

2 Cor. 4:7-9 

2 Cor. 12:9

1 Pet. 3:8 

1 Pet. 3:9,  4:9

1 Pet. 5:7,  4:1

1 Cor. 15:54 

2 Cor. 1:3-4,   1:10

2 Cor. 5:5

2 Cor. 4:7-12

Col. 3:13 

Col. 3:23-24

Col. 1:10-12

Deut. 31:8 

Deut. 33:26-27 

Gal. 6:2

Eph. 2:8-9 

Eph. 4:2

Hab. 3:17-19 

Heb. 10:23 

Heb. 12:2 

Heb.  12:10-15 

Isa. 41:10 

Isa. 42:16 

Isa. 46:4, 

Isa. 48:17 

Isa.53:4a, 5b 

Isa. 58:11 

Isa. 61:2b-3a  

Jer. 29:11 

James 5:16 

Josh. 1:9

John 6:35 

John 15:5, NLT

John 16:22 

Luke 1:78-79 

Luke 6:37 

Neh. 4:14

Phil. 1:6 

Phil. 2:13 

Phil. 4:6

Phil. 4:13

Prov. 16:9 

Prov. 17:17 

Prov. 17:22 

Prov. 19:2 

Psalm 23

Psalm 27:10 
Psalm 31:9

Psalm 31:14-15

Psalm 34:18 

Psalm 57:2 

Psalm 72:12 

Psalm 84:5-7,  NLT   

Psalm 103:2 

Psalm 116:5-7 

Psalm 118:7 

Psalm 138:8  

Psalm 139:13, 16  

Psalm 147:3 

Rom. 15:13 

2 Sam. 22:2 

1 Thes. 5:16-18 

The Scriptures listed above are placed in context for caregivers in the devotional My Mom Has Alzheimer's. You can read the intro and first three devotions for free at Amazon.com HERE. 

Beautiful in Each Season: Devotions for You is a devotional written especially for dementia patients. The readings are coordinated with the first 70 readings in My Mom Has Alzheimer's, so that caregiver and patient can share the same Scripture each day. The patient's book includes words to a familiar hymn with each reading.



 

Feeling Not Bright

When something happens that makes me feel not very bright, I don't handle it well. When I have to depend on the greater skills and understanding of others it makes me feel incompetent, and I lapse to self-condemnation.  

Today I was mapping my route to Abilene, Kansas where I will attend an authors' gathering at the community center from 1:00 to 4:00 p.m, October 29.  Come if you live nearby; it sounds like a neat event; a gathering of about 20 Kansas authors.  John and I will be sitting behind a basket of mini-Snickers, offering signed copies of my caregiving book for sale for just $9.25 plus tax--a bargain! You can read more about the event here:  Abilene Author Roundup


Preparing for this event required me to figure sales tax and map a route, and let's just say that math skills and directionality are not my areas of expertise.  I knew I wanted to charge $10 including tax for my book, and that the sales tax in Abilene is 8.15%.   

I tried algebra.  I was not terrible at high school algebra, a fact that occasionally leads me to bursts of over confidence. 


On the first post-it note I wrote:  .0815x + x = $10.00. 


On the second post-it, I divided both sides of the equation by x.  


I wadded up both post-its and started over.  I thought maybe I had two variables. Maybe it should have been .0815x + y = $10.00.  I realized I did not know how to solve for two variables.  I had a vague notion of what you already know; I was being dense. I wadded up that post-it. 


I decided to use words.  I am good with words.  .0815 times what I want to charge for the book is the sales tax I'll charge and to that I'll add the cost of the book and that will equal ten dollars.  So the variable is the pre-tax cost of the book.  One variable after all. 


I swallowed my pride and texted my daughter, who more quickly than I can finish word processing this sentence, texted me back with the answer (charge $9.25 for your book, Mom, .75 sales tax).  Before she became a stay at home mom she was a junior high math teacher.  Any one of her former students could have undoubtedly helped me out. 


"How did you do that?" I texted back.  

"10 divided by 1.0185,"  she replied.  


"Oh. Thanks."  


There's the ever present fear I might be getting Alzheimer's but then I decided, no, I've always been dense at math. 

So then I began to plot my course to Abilene.  We live only a couple hours away, it shouldn't have been difficult.  I went to Google maps.  I poured over the directions.  Not hard.  But I became suffused with a familiar, helpless sense of directionality confusion as I tried to think my way through east and west and right and left, and even though I own a Tom Tom (a GPS device that plugs into my cigarette lighter and gives me directions in a calming, British accented voice) I felt that sense of apprehension that always attacks when I have to navigate to an unfamiliar place.  

My husband came home for lunch and said, "Guess what! I can go with you tomorrow, so don't worry about finding your way."  I should have felt happy and relieved.  Instead I had to swallow irritation.  I wanted to be able to manage by myself.  I will be glad, very glad for his company and the day will be so much more pleasant because he is along, but I felt incompetent.  


Awhile later I went in to my mom's apartment to help her shower.  I was feeling stung over my incompetence at math and maps, and as we went through the preliminary steps to the bathing ritual I suddenly realized how often Mom must have to endure these same kinds of emotions.  How soul crushing to feel that you are being treated as though you aren't even bright enough to know which body part has been washed and which hasn't!  Mom doesn't remember that she doesn't remember, and so when I give her directions she must feel that I'm being patronizing. When we were new to the roles of caregiver and patient she would often say, "You must think I'm really stupid."  We've come to a more comfortable place now, and Mom seldom protests my sometimes thoughtlessly phrased commands.  With true humility she follows my directions even when I am preoccupied or taciturn. 


It was good for me to be reminded today of how it feels to have difficulty understanding concepts that others around me comprehend easily. Dementia patients have to cope with this kind of confusion often.  It is not surprising that depression can be a side effect of dementia.  It is very sad to feel "not bright." 


I found myself chatting comfortingly to Mom, thinking hard of ways I could make her feel good about herself.  I complimented everything from the condition of her skin to how well she puts up with me.  And you know what she said?"  


"Well, my daughter takes good care of me and most of all, God is with me." 


Well, I'm a slow study, but God is with me and has provided me people to take good care of me when I can't handle things myself.  I feel humility and gratitude today, and that's lots better than pride.  


Thank You, Lord. 

And One More Word About the Importance of Respite...

I've read so much of Laura Ingalls Wilder's writing as well as the words others have written about her that I feel I know her better than I knew my own grandmother.  Her Little House books won me over when I was a third grade student at Crestview Elementary School in Merriam, Kansas, many, many years ago. As an adult I've grown to respect Laura's faith in God, her knowledge about the things that are really important in life, and the words of wisdom she wove throughout her books.  


Today I found one of Laura's quotes in a book by Dan L. White.  This quote reminds me of my last blog post, which talked about the little vacations a caregiver needs to weave into each day in order to avoid mental and emotional weariness: 

"We can take a wonderful vacation in spirit, even though we are obliged to stay at home, if we will only drop our burdens from our minds for awhile.  But no amount of travel will give us rest and recreation if we carry our work and worries with us."  Laura Ingalls Wilder, quoted in Dan L. White's Laura Ingalls' Friends Remember Her: Memories from Laura's Ozarks Home

During my devotion time it is difficult for me to drop my burdens for even a little while.  I know this grieves the Lord's heart.  Just think of a loving Father, standing with arms outstretched, ready to carry His child's heavy load.  But the little child ignores her father and stubbornly clings to the idea that she's the one who has the responsibility to carry her own burdens. 


I'm thinking today of the "vacation in spirit," as Laura calls it, that we need to take every day through prayer, praise, and Scripture.  Sometimes I feel that my devotion time is one more thing to be checked off my "to do" list.  Thinking of this time with the Lord as a mini-vacation might just help me to partake more fully of the refreshment that's available when we sit at His feet.  


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

Need a Bit of Respite?

Caregivers need to take time away from the unrelenting demands of caregiving.  For the Christian caregiver, daily time with the Lord is a must.  We are to find our rest in Him. 

Sometimes though, I know it is o.k. to read a good book, watch a wholesome movie or take a nap. We caregivers don't get many opportunities to take a true vacation, and so small periods of respite within the course of each day become important. 

I have a collection of books that provide me this kind of respite.  Jan Karon's Mitford series, James Herriot's tales of veterinary work in the Yorkshire Hills, and Laura Ingalls Wilders' Little House books are some of my favorites. 

I also love to write funny or entertaining stories and share them with others.  If you are a caregiver in need of a little bit of light reading, you might enjoy my farm blog.  When my teaching job was discontinued by the school district, I chose to take early retirement and spend more time helping my husband on the farm.  To say I'm out of practice with such pursuits is an understatement. My friends are enjoying the blog's description of my mishaps!  You might too. If you need a little respite today, please accept my gift to you of a funny story or two at Back Home on the Farm.

If the link doesn't work, cut and paste this into your browser:  http://heopensanother.blogspot.com 

Something's Not Quite Right Here!

During Lenten season the spring before my mom was diagnosed with Alzheimer's, someone draped a simple purple stole over the Cross at the front of our church's sanctuary.  The first Sunday of Lent we found our seats in our pew at church, and as soon as Mom looked up she became very upset by the fact that the stole did not hang evenly.  It wasn't supposed to be even; it was arranged artfully so that one side hung about a foot higher than the other.  I explained this to her repeatedly, but each week she would become oddly disturbed when she focused on the stole.  "It should be even!" she said angrily.  "I don't know what they think they're doing."  

This was one of the early signs of Mom's dementia, but in the seven years since her Alzheimer's diagnosis her  upset over small things that are not as they should be has remained. 


"Would you straighten the window shade...the print on that white board is smudged...one slat in the blind is bent...can you turn that cushion on the couch so the design is right side up...."  Mom surveys her world from beneath a ferocious frown and makes comment on things that aren't quite right. 

If there were a list of rules for caregivers, "Don't take things personally" would be ranked at the top, and is certainly the caregiving rule I break most often. It is unfair for me to respond as though Mom is deliberately being hurtful when I know that her behaviors are dementia related.  And yet, I work hard to keep Mom's environment pleasant, and it seems to me that she spends an unreasonable amount of time commenting on small things that aren't quite perfect. I can't help but feel a little hurt when she seems to constantly focus on things that are wrong instead of commenting on things that are right. 

However, there is a cognitive basis for this behavior.  Dementia patients have a tremendous struggle to make sense of the world.  So many things are difficult for Mom to understand; her questions  reveal the depth of her confusion: "Why am I here?  Who takes care of me?  I know you are Linda, but who is your husband?"  In the face of so many confusions, the ability to notice small things becomes like an anchor she can cling to.  Mom knows that writing is easier to read if it is not smudged.   The shade should not be crooked.  The pillow looks better right side up.  She comments on such small things because these are things she knows, and on a deeper level, I think her attempts to put small things to rights reflect her ongoing struggle to make sense of a world that is increasingly incomprehensible for her. 


I'm praying today for patience and understanding as Mom works hard to set her crooked world to rights.  

God and Alzheimer's

People wonder about how a loving God can allow bad things to happen, but when the bad thing is Alzheimer's disease, the question of "why" is not usually the first one that comes to mind.  There is an initial panic, and the questions run more like this: "What am I to do?  Where do I find help?  Who will make decisions? How will I survive?"  

When my mother was diagnosed with Alzheimer's, I cried out to the Lord with these kinds of questions.  

I've learned that great emotion of any sort--grief, pain, or fear--can keep us from hearing God's voice clearly.  It is at times like this that having a history with the Lord is extremely helpful.  The first time a terrible crisis of grief or pain is encountered reminds me of the caliber of fear I experienced as a child when I suffered a bad dream. The first time I awoke in the night following one of these bad dreams, I believed the nightmare was real and my terror was intense.  But although I went through a phase during which I suffered recurring nightmares, the fear was never again so all encompassing as on that first occasion. On a subconscious level I had become aware that the bad dream was not real, I would wake up; and everything would be alright.  Similarly, although I was miserable and afraid at the time I was told my mother had Alzheimer's disease, I had a healthy confidence that the Lord was going to help me simply because I knew He had helped me in the past. 


When we've walked with the Lord for awhile, we learn that even though we may not be able to hear him clearly, He is with us nonetheless. God's presence with us does not depend upon our ability to perceive Him.  His power, presence, and provision in our lives do not depend on us at all, but on Him.  When we belong to Him, we have the right to cry out to Him; and He isn't particular about how we do it.  Eloquence is not required.  The prayer might take place while on a solitary walk, in a roomful of people, or leaning with one's head on the steering wheel of a parked car sobbing out broken words of anguish, as I found myself soon after my mom's diagnosis.  He hears our prayers.  

If you are in the midst of your first major life crisis as a Christian, please trust what I tell you now; the Lord will help you.  He will help you in ways you can't see or imagine.  As you trust Him and cry out to Him the path before you will be made clear.  Don't be afraid.  He loves you, and He will take care of you.  


Here is comfort from Scripture: 

God does not willingly bring grief or suffering (See Lamentations 3:33;) His will flows over all that is grievous and changes darkness to light (See Psalm 18:28;) all things are incorporated into and transformed by His perfect will (See Romans 8:28;) where time and eternity touch, His will is done on earth as in Heaven (See Matthew 6:10;) we can’t yet perceive what we will one day see clearly because we walk by faith and not by sight. (See 1 Corinthians 13:12.)

Back in April I wrote a post entitled "Where is God in Alzheimer's?" and included the guidance the Lord has provided me these past seven years as I've learned to live with my mom's failing memory and to trust the Lord day by day for the path that lies ahead.  If you are hungry for more comfort and help from the Lord in the wake of a diagnosis of dementia for yourself or someone you love, I pray you will be helped by what you find here.  Clicking on the title of the post at the beginning of this paragraph will take you to the April post. 

Respite Care

I believe there is often confusion about the meaning of respite care. It must be understood that respite care is relief provided to the caregiver.  There is a tendency even among caregivers and respite care providers to think that respite should consist of care provided directly to the patient.  This isn't necessarily so.  Respite care is any task that would provide the caregiver stress relief, including (according to my respite caregiver, Sandy) cleaning my kitchen floor.  Each week Sandy appears, visits for a few minutes with my mom, and bids me goodbye (even if I'm only going upstairs to work on writing assignments or to rest).  She then works her way around my home doing any housekeeping task she can see that would make my life easier.  Meanwhile, for that brief time she is here, I am completely free of responsibility to my mom.  During Sandy's work hours in our home , if Mom calls, Sandy answers; and meantime household chores that have gone undone are taken care of for me.  Respite indeed! 

We sometimes fail to take into account the fact that caregiving brings emotional burdens that many times--no, I'm going to say MOST times--outweigh the physical work involved in taking care of someone who is infirm.  Caring for someone who is dying is the most emotionally stressful form of caregiving. When we are involved with a disease such as Alzheimer's and the dying process is lengthened over a long period of time--it has been 7 years and counting for us--well, let's just say that respite is sorely needed.  

The most valuable services Sandy provides for us don't have to do with the time she spends with my mother, but with the thoughtful things she does to make my day-to-day life easier.  She recognizes that I am the one who carries the grief and burden of caring for my mom, and that her job is to lighten my load wherever she can.  We are blessed by her presence in our lives; thank you, Sandy. 

The following is a list of Sandy's stellar qualities, and can be used as a guide for understanding what constitutes good respite care:  

• Prays for the caregiver and care recipient
• Recognizes that the job of respite caregiving is to lighten the load for the primary caregiver and focuses on the caregiver's needs
• Understands that the caregiver bears burdens that can't be seen and is accepting of grief and stress related behaviors (aka, grouchiness)
• Empathizes with the terrible grief of seeing a loved one behave in aberrant ways and never makes jokes about the patient's disease related behaviors
• Does not repeat stories--humorous or otherwise--about the patient or caregiver, and practices complete confidentiality 
• Does not criticize the primary caregiver's caregiving decisions, recognizing that while the respite care provider spends just a few hours each week in the caregiving environment, the primary caregiver is there 24/7. 
• Remembers that the patient's current condition not an accurate portrayal of the person he/she once was, and does not judge him/her for disease related behaviors.  
• Is honest and trustworthy 
• Treats the patient with kindness and empathy, aka, love

If you are the primary caregiver for someone who is infirm, please do be proactive to find time away.  Whether the respite care occurs in one's home or entails finding a nursing home or daycare provider that will take your loved one for a regular time away from the pressures of caregiving, respite care is a vital part of providing long term care to a loved one. 

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).