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.