Monday, August 19, 2013

Caregiving is NOT Parenting!

When I became Mom's caregiver, the skill set that helped me most was labeled "parenting."  Bathing another person, changing a diaper, selecting and laying out clothing for the day, meal preparation; all these things echo the ministrations I once provided my toddlers.  The vigilance needed to keep a small child safe is a learned behavior, and I remember a strong sense of "deja vu" when I began to care for Mom.  I clicked back into the attentive mindset and willingness to be on call 24/7 that my children had required of me when they were young. 

However, an elderly person--no matter what stage of dementia--is not a child, though behaviors may become childlike.  This is such an important delineation:  although similar skill sets may be involved, caregiving is not parenting.  For example, it is never appropriate to discipline an elderly care recipient.  All too often I am tempted to say something like this to my mother, "You chose to behave that way, and so now you have to face the consequences."  Dementia patients have no memory of sinful/rebellious/negative choices, and to remonstrate with them for behaviors they have forgotten is not only fruitless, it can damage the tender hearts of these vulnerable people God has entrusted to our care. 

It is important to accurately discern caregiving issues versus patient issues.  This is more difficult than one might think.  Indicators of confusion over these two areas are signaled by statements such as this, "She just won't stop doing thus and so..."  or "I've told him and told him and he just won't do what I ask..."  Dementia patients have lost the ability to change in response to environmental cues.  It is up to the caregiver to change the environment, and not in a punitive way.  For example, when my mom was driving me mad by rummaging through the freezer compartment of her refrigerator, looking for something good to eat, it was my fault and not hers when she gouged out a serving of raw meatloaf for herself.  I'd taken to using her freezer to store meals I prepared for our family.  Solution:  I began using that space for frozen vegetables and fruits--if Mom gets into those it is no big deal.  The meals I prepare in advance are now delegated to the chest freezer in the basement.  But I admit I attempted fruitless solutions first, at first asking Mom not to get into the freezer (HELLO!  She has Alzheimer's--she isn't going to remember my heartfelt request).  And I blush to tell you that I duct taped the freezer closed and then was angry when Mom thwarted this strategy by removing the tape. 

As caregivers we have to be very aware that the "tough love" we exhibit to children is not an appropriate strategy for dementia patients.  When something is amiss in the caregiver/patient relationship, it is almost always the caregiver who must be humble enough to make a change of behavior.  Humility is key.  Respect is paramount.  Dementia patients are not children.  I pray to empathize with my mom, to remember that she has lost so much in terms of independence and free choice.  It is within my power to see that she does not lose fulfillment of the most important human need of all, which is to be loved.  I must not withhold my love from Mom when her dementia related behaviors displease me, and I need to be mature enough not to respond to her in anger for behaviors she can't remember.  She needs me to be steadfast in my acceptance and love for her regardless of her behavior. 

Sunday, August 11, 2013

Bear With Them, Love Them

I've written about my mother's case of "pleasant dementia;" she enjoys life, doesn't need constant care, and is happy to spend time alone with her journal, books, and music.  But there is an unpleasant part of her dementia-related behaviors that I feel I should discuss here, and I'm praying to do it in a way that honors Mom but yet assures other caregivers they are not alone.  I also need to write this post for the sake of dementia patients whose upsetting behaviors might otherwise be chalked up to plain old meanness that is deserving of a like response. 

Keep in mind we have a tendency to view the past through the lens of the present, so when an individual's current behaviors are mean and bossy there is a tendency to say, "You know, I remember other times my loved one was like this, and I see now this is nothing knew; they've always been this way!!"  Be careful about this tendency to let the present rob you of positive memories.  Be intentional about remembering ways your loved one has blessed you in the past.  Make a list if you need to.  Alzheimer's disease brings forth behaviors that, in the general population, would be labeled in negative ways.

Becoming dependent on others for care in combination with the confusion of dementia is a vicious one/two blow.  A dementia patient loses freedom of choice that those of us who function independently take for granted.  My mother's meals, clothing choices, finances, and surroundings are all orchestrated by me, and I do not always take her suggestions graciously.  I'm tired, I do everything for Mom, and if she suggests that I have not straightened the cushions on the couch to suit her or that she would like me to change the painting over the chair, I'm likely to convey impatience.  I'm ashamed of this tendency; I need to remind myself that a dementia patient's ability to ask for help outlasts the ability to carry out the multiple steps required to complete a task independently.  I know I ought to be kind and work hard to respond to Mom sweetly when she treats me like a waitress or housekeeping staff.  

I have a hard time with Mom's imperious ways, and I've noticed others do as well.  She has adopted the attitude of one who is paying for services that don't quite measure up to her expectations, and this makes people respond to her negatively.  She also is quick to respond sarcastically (if not appropriately) as though to prove that she understands what's going on well enough to make comment. I've learned that many dementia patients display similar behaviors.  Not long ago I overheard a woman complaining angrily about her sister, who had just been diagnosed with Alzheimer's.  "She expects me to wait on her hand and foot!  She orders me around like a servant! And she is RUDE to me!" 

Nursing home workers, home care providers, and anyone who works with a dementia patient need to remember the patient has no real power.  As caregivers, we are calling all the shots for our care recipients, and for the most part their behaviors have no power over us beyond that of annoyance.  We are the strong ones in the relationship as our care recipients cling desperately to shreds of free will that have been robbed from them by the horrors of forgetfulness and physical infirmity.

As care providers we can submit with good humor to being ordered around, do a little extra work at the care recipient's command, and continually remind ourselves of the underlying pathos of life circumstances that have placed these dear ones in our care.  Treat them gently, and with love.  Respond to poor treatment with kindness and resist the urge to respond in kind.  They are not children who need to be disciplined, they are old people who have lost nearly everything they once held dear.  Let's not take our love from them at a time when, no matter how they are acting, they need it most.


We who are strong ought to bear with the failings of the weak and not to please ourselves (Romans 15:1).  

Sunday, August 4, 2013

Gratitude for Forgiveness

Do I make my relationship with my mother sound idyllic?

Well, it isn't.  I get by every day on grace.

If you think the principles revealed through my writing are only for easy Alzheimer's patients and their Very Godly caregivers, think again.

I was going to record, to the best of my memory, a recent verbal exchange with my mother; one that would serve to convince you that there are times when I am not a good or kind caregiver.  But I felt a stop in my spirit; forgiven sin is removed as far as the east is from the west and we aren't to keep a record of wrongs, not even our own.  Suffice it to say that my words were not only rude, they were mean.  Good caregivers are not rude and mean.

I came to my prayer closet and opened a journal file.  Sighing, I began to think of how to word my confession...and instantly, before I had even placed my hands upon the keyboard or gathered my thoughts, the Lord touched my heart with these words:  "You are forgiven." 

I don't deserve forgiveness.  Doesn't matter.  Jesus loves me.  He forgives me.  He died for me and He lives for me.

He loves you.  He forgives you.  He died for you and He lives for you.

Aren't we blessed? 

Friday, July 26, 2013

Logan's Diagnosis; Breath Holding Syndrome

I want to thank those of you who prayed for my grandson, Logan.  At age 1 (the day before his first birthday, in fact) Logan experienced a period of apnea--he stopped breathing--and also experienced seizure-like body movements.

We were terrified.

We have had the best possible outcome; Logan has a benign condition that he will outgrow.   A pediatric neurologist assured us that his symptoms are consistent with a condition in which a child exhales, then fails to take another breath.  Sometimes he may begin to breathe again within just a few seconds, but sometimes he may lose consciousness, at which time he will automatically begin to breathe again.  It is an involuntary response; during an episode the child is unable to inhale.  The neurologist says the syndrome is somewhat misnamed and misunderstood, because the term "breath-holding syndrome" makes people think it is something the child does on purpose or when he/she is angry. Although attacks may follow emotional upset, pain, or a crying bout, they are involuntary. 

Logan did not seem particularly upset when he had his episode, but he had been crying a bit. Perhaps he was in pain from a tummy upset or from some other unknown cause; pain can trigger the response.  Some children never have another episode, and that's our prayer. 

Thank you, thank you for your prayers! 


Thursday, July 18, 2013

Don't Compare

I have just finished reading an inspiring book entitled Kisses From Katie: A Story of Relentless Love and Redemption, by Katie Davis.  Katie lives her life for Jesus in a way that humbles and challenges me.  As I read about this woman who, at age 19, gave up her affluent way of life here in the United States and moved to Uganda out of obedience to the Lord's call, I felt at first defensive, then ashamed, and finally repentant.

I want to share with you how gently the Lord dealt with me as I began to open my heart and mind to Him, asking His forgiveness for all the sins I condemn in myself.  I share it at this caregiving blog because I know about the chronic sense of failure that is inherent in being a caregiver for someone who has dementia, especially if that person is someone who used to take care of you in the past.

If you've been a Christian for awhile there are probably points on your timeline where you have answered "yes" to the Lord's call, choices you may have forgotten but the Lord has not.  I want to offer you the comfort I found as I prayed today, recorded with the Lord's portion of the conversation in boldfaced print:

What is in front of you? 

Cleaning the bathroom.  Straightening this room.  Taking Mom for a walk. 

Why do you feel these things are of less value than what Katie Davis has done? 

Things like cleaning dead rats out of stovepipes?  Changing a diaper of a child and finding it full of worms?  Ministering to HIV positive children, kissing the heads of ringworm and scabies infected children? 

While I overeat, sink into laziness and depression, and procrastinate about cleaning a bathroom that isn’t very dirty at all—and …

Stop. 

Stop right now.  You have obeyed me, no less than Katie Davis has obeyed Me.  At the same age she was when I laid My hand upon her life, you responded to a similar call. 
What?  I got married.

You married in obedience to My call;  you were called to marriage.  I remember heart struggles you have forgotten.  I remember wounds that have healed.  I remember prayers and fastings you now dismiss as being of no import.  "You have kept count of my tossings; put my tears in your bottle. Are they not in your book?" (Psalm 56:8 ESV).  
So.  However improbable it seems, the Lord in His perfect knowledge values my small acts of obedience just as He does those of a Christlike role model such as Katie Davis.  And He doesn't want me making tongue-in-cheek analogies, as I might be tempted to compare Katie's ministry to an Olympic gymnasts' floor routine and my own to an out-of-shape 59-year-old's attempt to do a single pushup. But I'm to make no comparisons, because I am precious in His sight and of great value to Him.

You are too. 

You can find out more about Katie Davis's ministry to the people of Uganda at Amazima Ministries' website:  Amazima.org  


Sunday, July 14, 2013

When Other Crises Distract...

The events of my life continue to unfold in all their stressful, grief-threatening glory despite the fact that I am my mother's primary caregiver.  When new ordeals loom I long for the days when, as a teacher, I could say, "I'm sorry, I'm already serving on two committees; my schedule won't allow me to take a third assignment..."  Well, sometimes that worked and sometimes it didn't--but wouldn't it be nice to feel we had the option of opting out?

Our most recent trauma is so close to my heart that I can scarcely write about it, but I feel that Holy Spirit push to share because it isn't right for me to go silent when I am struggling.  If I share with you only the calm words of guidance that spring from the things in my caregiving journey that are right, then how can I expect to help if you are struggling with things that are wrong? 


Our latest traumatic event is this: our grandson, precious little one-year-old baby boy, experienced a frightening health crisis last week.  Now we are in the midst of a time of trusting the Lord through a trial we did not expect, praising Him that we have been allowed to keep this precious little boy with us, but anxiously vigilant now and struggling not to become fearful. 

My mother senses she is no longer the focal point of my attention, and is not bearing this well. My distraction makes her restless and insecure, and she  becomes fearful and suspicious about whether her needs will be met.  She writes journal entries like this one:  "They are probably having ice cream in there and it would never occur to them I might like some too."  Five minutes after I am in her room I might receive a phone call from Mom:  "I thought you were going to bring me something good to eat," she says.  

Just at the time I'm feeling emotionally vulnerable and still shell-shocked with fear for my grandson, Mom becomes sarcastic and rude.  She is unable to comprehend the gravity of our grandson's situation, and when I try to talk to her about it she brushes it off with some surface level comment such as, "Well I'm sure he'll be fine, I hope they don't get themselves all riled up about it."  Anything that distracts my attention from her is perceived as a threat. 

We've taken measures to alleviate Mom's fears by providing her extra snacks, which she loves.  Our respite caregiver spent more time than usual visiting with Mom this week.  I've learned that the extra stimulus of even pleasant conversations will stir up Mom's discontent the moment I leave the room, and so my strategy has been to be very intentional about eye contact, pleasant expressions on my face, and hugs.  These things seem to reassure her in the way that my words cannot.  It's important for me to leave my anxieties on the other side of Mom's apartment door, because she senses how I am feeling.  A very powerful mood lightener for Mom is shared laughter and so I give myself extra caregiving credit if I can find something that makes her smile!

It is difficult to "put on a happy face" for the person who once shared and lightened my burdens, but that's what's needed now.  If I will just take an extra moment or two to whisper a prayer and to place a smile on my face before I enter Mom's room, I know she'll be reassured. 
**********
My grandson experienced a period of apnea at 2:00 a.m. on his first birthday.  He just happened to be sitting on his mother's lap; she was rocking him back to sleep after he had cried out.  He struggled to breath, would cry out, catch a breath, then stop breathing again.  This cycle repeated several times. Finally he lost consciousness.  Just when my daughter and her husband were preparing to initiate CPR, he opened his eyes, was uncharacteristically quiet and withdrawn for awhile, and then seemed fine.  No further incidents have occurred.  He is in the process of receiving medical tests, and is being monitored at night by motion detecting baby monitor.  My prayerful impression is that this is a one time event, but we need prayer for knowledge and wisdom in the days ahead.  Please pray for Baby Logan! 


Thursday, July 4, 2013

What God Can Do

As Christians most of us become a little bit inured to Biblical truths that ought to cause our hearts to beat faster as our eyes widen in awe. 

"I can do all things through Christ, who strenghtens me (Philippians 4:13)"...knew that.

"When I am weak, then God's strength works through me (2 Corinthians 12:10)"...uh huh.

"God can do much more than we can even imagine (Ephesians 3:20)...yawn.

I'm afraid this is the state I found myself in when the Lord gave me a persistent nudge to seek a TV interview for my book.

I ignored Him. 

Then, when that push became more persistent and urgent, I bargained, "OK, Lord, if someone asks me to do a TV interview, I won't turn down the opportunity." 

I figured I was completely safe. 

Meantime, another one of those persistent nudges began to work on me..."Do a Youtube video series highlighting the information from your caregiving book.  Those who can't afford to buy a book or who might not be reached in any other way can thus benefit from the blessings the Lord has provided you and your mom." 

The technology and "how to" fell into my lap, and though recording and editing were time consuming, this didn't carry the fear factor for me that the thought of a live TV interview did.  And so I obeyed.  I learned as I went, and as I watched myself on camera was surprised at how many funny little mannerisms I possess that I didn't even know about.  I didn't know the Lord was preparing me to obey Him in a bigger-for-me way. 

When the call came it was from the public relations manager of a book store that had invited me to do a signing.  "Call the TV station and ask for Ralph Hipp," he said.  "He will get you on his 4 O'Clock show."  I hesitated and even as I shook my head vigorously from side to side in an emphatic "NO," I heard myself say, "Yes, I'll call the station." 

In the six week interim I fought down my fears with Scriptural promises that suddenly applied to actual situations in my life. The interview went well, and I learned about God's strength in a way similar to that described by a friend who, at age 60, parachuted from a small plane with the aide of an instructor.  "They give you the opportunity to pull the cord," she said, "But if you don't do it the instructor will." 

God never asks us to take a leap of faith without promising to make the jump with us.  Whatever challenges you are facing as a caregiver I can tell you with renewed certainty--"God is with you. He won't let you down.  He will enable you!" 



Giving up my fears entailed acceptance that I wasn't going to perform perfectly!  This week's Caregiver's Corner reveals how perfectionism can cripple us in our caregiving journey...find it here:  https://www.youtube.com/watch?v=-itJZEfW31A