Saturday, November 21, 2015

When Words Hurt

We must pray protection over the minds and hearts of our care recipients, because the devil has no compunctions about using the vulnerabilities caused by disease as conduits for his attacks. 

My mother's infrequent bouts of verbal abuse almost always happen while I am cleaning up a toileting mess, and though I do my best to be cheerful and matter of fact, she feels embarrassed. It is my theory that embarrassment triggers defensiveness, but whatever the cause, it is soul withering to have someone who is supposed to love me spew words so hateful and hurtful that I’m brought to tears, especially when I’m often on my hands and knees scrubbing waste from the floor when it occurs.  At times like these I’m helped somewhat to recognize that in her right mind, Mom would never treat me like this. When hatred flows through her toward me, its source is from the enemy, and the Lord is my shelter from evil attacks. It helps to pray for Mom while she is being hateful. This keeps me from responding in kind, and sometimes defuses her attack. 

In the past few weeks I've kept a list of some other situations that trigger Mom's negative behaviors and the solutions that have worked for us.  I hope these help others: 

  • Even if you were able to be a perfect caregiver, your care recipient would still sometimes exhibit negative behaviors. Dementia patients are often influenced more strongly by inward cues rather than environmental cues. This means that physical discomfort or negative thoughts can have a stronger influence on patient responses than anything we as caregivers can do to reassure or comfort. 
  • Don’t try to reason with an angry dementia patient. I have learned that my mother will cling to her emotion with the tenacity of one who has lost everything but what she knows she feels. The emotion is real to her, and no logical reasoning or kind words can make a dent in her conviction that her anger is justified. Much more effective are strategies of distraction such as offering an appetizing snack or a showing a favorite movie.    
  •  Lying is not ok, and we should never make promises we do not intend to keep, but some of us have a commitment to strict accuracy of detail that is not helpful in dealing with a dementia patient. For example, when dementia patients refer to deceased loved ones in the present tense, it is cruel to continually remind them that the loved ones have passed away. Another category of appropriate stretching of the truth is when the patient balks at some practice that is necessary for health and well-being. I tell my mom, who resists bathing, that the doctor has prescribed a daily sponge bath to help protect her from skin rashes (she doesn’t have rashes, and the doctor didn’t say she should bathe—though he would probably agree if I asked him!). Mom can’t take instruction from me, but, like many of her generation, a doctor’s orders carry authority for her. 
  • When memory of the immediate past is nonexistent, a dementia patient has only the present moment. Mom knows that when her digital clock says 12:00, she should receive lunch. If I am late with her lunch only one time in a six month period, she will ask, “Why is my lunch always late?”  And she is angry because in her mind this situation is not acceptable. My best strategy is to apologize, promise to do better, and to know that in five minutes Mom will have no memory of my perceived negligence. 

My mom was and is a positive and Christ-centered person. She often, even now, expresses love and appreciation for me. I must not allow her Alzheimer's-related negative behaviors to compromise my ability to love and appreciate her for what she has been and even for what she often is still, despite her disease. 
      It is  helpful for us as Christian caregivers to remember that hatred has its source from the enemy of our souls. We must pray for the ability to love our care recipients with God's love and continue to pray for them, even when the enemy uses their vulnerabilities to aim his poisonous barbs toward us.  

Sunday, October 11, 2015

Cumulative Effect

Dementia can rob the ability to remember which loved one dealt which hurt over the years, so that the expressions of anger and resentment the primary caregiver must endure from the patient are the cumulative result of the sorrows of a lifetime. This, along with the patient's loss of ability to filter emotions and monitor his/her words, can be devastating for the caregiver, and it is nearly impossible not to receive hurt.

It is difficult to avoid holding the patient accountable, even when we understand the dynamics behind the hurtful behaviors. I think we as Christians are especially hard on one another; we feel that Christian dementia patients ought to have forgiven all those people who caused them pain in the past. And indeed, if any of us were capable of beginning an Alzheimer journey with a perfectly clean bill of spiritual health, I imagine we could be sweet, encouraging, and loving patients who never caused our caregivers a day of sorrow.

In other words, perfect people would make perfect Alzheimer's patients. But of course we aren't perfect, none of us; all have sinned (see Romans 3:23).

Even with perfect cognitive health, all of us have one or more people in our lives who take the brunt of our emotional stress because we feel they deserve it. We hold our spouses, parents, and sometimes our own children accountable for the state of our emotional health, and they let us down. And so we feel resentment, and that resentment becomes a vehicle for our hurtful words and actions. In health we are more subtle than an angry and hurtful dementia patient; we aim our blows more carefully.  But the sin of failure to love as we've been loved and forgive as we've been forgiven is present within us all.

As healthy individuals, we need to look to a future when our ability to monitor our sinful responses will be lessened. This provides some motivation to, on a daily, incident-by-incident basis, forgive those who have trespassed against us, but the greatest impetus comes when we look at our Savior's face. Reflected in His gaze, we see ourselves as the sin-tainted creatures we are, and humility fuels our gratitude to Him for loving us enough to die for us. As we look steadily at Him, we understand that we can love others as He has loved us; sacrificially, with compassion, taking blows we do not deserve for His sake, forgiving as he forgave us.

It isn't surprising that people are sinful, and it isn't just the mentally compromised who need compassion and forgiveness. We shouldn't be shocked when our fellow human beings are hurtful or make excuses for the sinfulness that resides in each one of us. We are only protected from the tyranny of resentment through forgiving and being forgiven. 

As caregivers we need the ability to respond with compassion to those who have lost the ability to monitor their emotions and words even when they cause us pain, but we also need protection from the harm caused by hurtful words and actions. Praise be to the God whose love covers our sins, enables us to forgive, and heals our hearts. 

Caregiver's prayer: Father, please protect my heart and grant me the ability to respond to my loved ones with Your compassion and love. Please keep me from reacting to hurtful behaviors in sinful ways and forgive me when I fail; Lord please heal my broken heart. Help me to love and forgive as You have loved and forgiven me, in Jesus' name I pray, amen.


Put up with one another. 
Pardon any offenses against one another, as the Lord has pardoned you, 
 because you should act in kind.  
But above all these, put on love!  
Colossians 3:13  The Voice

Monday, September 21, 2015


In the spring of 1980, my husband and I learned we were expecting our first child. Many of the events of that year of promise are recorded in my novel, The Children Are Tender, but the fictionalized version of that pregnancy does not include the despair I felt as I wasted away due to Hyperemesis Gravidarum, which is extreme morning sickness that results in loss of more than 10% of one's body weight. And then, in my third month, I suffered a series of viruses culminating with one that caused arthritic pain so severe I became bedridden for over a week. I was told that having that particular virus at my child's stage of gestation could cause birth defects (human parvovirus B19/Fifth disease).  I was also given two high powered injections for nausea in the emergency room and took a daily medication (one that is no longer used during pregnancy) to alleviate the constant sickness.

I was convinced that my unborn child had been harmed by all I'd suffered.

You can imagine the desperation and grief of my prayers as I cried out to the Lord. In response He provided a poem, a miraculous provision in those pre-internet days to a person who never sought out or read poetry if she could help it. But this one cropped up in a daily devotional I was reading at the time, and I copied it onto a piece of notebook paper and taped it to my refrigerator. I read it daily during the remainder of my pregnancy, and it kept it's place of honor, center front on the frig, for years after until it was yellowed and stained with age.

Based on Jeremiah 29:11, Freda Hanbury Allen's poem "My Plans for Thee" provided a lifeline to my faith.  I read, reread, claimed, prayed, and memorized Allen's illumination of the trust in God that brings peace of mind and heart. I clung to these words hour by hour through dark nights of sickness and fear for myself and my unborn child.

In the fifth month of my pregnancy I walked into my Sunday School classroom and though no students had yet arrived, there waiting for me was an acquaintance whom I liked but had kept a polite distance from because she was a little "out there" in her faith. I remember that she once gave a spontaneous rendition of a praise song in the middle of a Bible Study, much to the embarrassed surprise of a group of ladies whose routine weekly meeting was stirred to unexpected alertness by  her exuberance. 

"I want to pray for you and your baby," she said, and with no further explanation she placed her hands on my modest baby bump and prayed for healing for my child. And like Elizabeth, who felt her baby leap in the presence of the mother of our Lord, my child leapt within my womb, and I felt the warmth of the Holy Spirit flood me.  Four months later, our healthy baby girl was born.

Fast forward 35 years, to a time when I am in my eleventh year of taking care of my mother, who has Alzheimer's. With such a history of faith building events in my life, one would think that nowadays I ought to be able to calmly trust the Lord for my present as a caregiver and for a future that seems uncertain.  However, I'm ashamed to say I do still struggle with trusting God when my circumstances are difficult.

But, yesterday afternoon our daughter, Melinda, paid a visit accompanied by her two beautiful sons, ages 3 and 7.  Melinda will give birth to our third grandson next month, and as I hugged her goodbye I remembered my pregnancy with her. As I pulled her close, I realized I was holding in my arms tangible proof of the certainty of God's ability to bring beauty from the ashes of suffering and fear.

We serve a God worthy of our full trust. If you are undergoing a difficult or dark time as a caregiver I hope this poem will encourage your heart as it has mine through the years.
My Plans for Thee
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
  - Jeremiah 29:11

        The love of God a perfect plan
        Is planning now for thee;
        It holds "a future and a hope,"
        Which yet thou canst not see.

        Though for a season, in the dark,
        He asks thy perfect trust,
        E'en that thou in surrender "lay
        Thy treasure in the dust,"

        Yet He is planning all the while;
        Unerringly He guides
        The life of him who holds His will
        More dear than all besides.

        Trust were not trust if thou could'st see
        The ending of the way;
        Nor could'st thou learn His songs by night,
        Were life one radiant day.

        Amid the shadows here He works
        The plan designed above:
        "A future and, a hope" for thee,
        In His exceeding love.

        "A future" - of abiding fruit,
        With loving kindness crowned;
        "A hope" - which shall thine own transcend,
        As Heaven the earth around.

        Though veiled as yet, one day thine eyes
        Shall see His plan unfold,
        And clouds that darkened once the path
        Shall shine with Heaven's gold.

        Enriched to all eternity
        The steadfast soul shall stand,
        That, "unoffended," trusted Him
        Who all life's pathway planned.

- Freda Hanbury Allen.

Sunday, September 13, 2015

Difficult Subject

My husband and I attended an Alzheimer's information forum a few weeks ago.  It is always good to gather with other caregivers, share stories, and receive guidance from professionals who remind us that Alzheimer's disease impacts behavior and personality. An Alzheimer patient's aberrant behaviors aren't the result of negative personality traits, but have their basis in the plaques and tangles in a mind that has been compromised by disease.

This fact--that brain damage is to blame for bad behavior--often spurs us as caregivers to feel we should be able to ignore patterns of responding that, if they originated from someone whose mind is whole, would be labeled evil, hurtful, sinful, or even criminal.

It's a fine line to walk. As a caregiver, should I ignore my mother's crotchety and critical words?  Yes, of course! She doesn't understand where she is or why I am being so pushy in my insistence that she undergo uncomfortable (and in her mind unnecessary) procedures such as bathing.  Mom doesn't perceive the world accurately, and I ought to be able to respond with love and empathy and not with childish hurt feelings when she is rude.

But at the forum there was a daughter who, with tears in her eyes, told of her Alzheimer dad's groping and fondling her every time she comes near to him.  In other contexts, this behavior would be viewed as appalling, and the victim would be protected (if she had courage to file a complaint, that is).  But because her father has Alzheimer's, the suggestions given this poor woman were to keep his hands busy, perhaps with Duplo blocks or clay.  No one mentioned that perhaps she should be excused from caregiving duties because of the devastating emotional fallout of coping with the degradation and humiliation that enduring such behaviors from a parent brings. No one suggested that she be protected, or brainstormed paths of escape from this appalling situation.  This woman was hurting, and with embarrassed giggles and a few worthless suggestions, we hurried on to the next topic, acting as though this sort of thing is the norm and that caregivers shouldn't make a big deal of it.  We let her down, and I only hope she reads these words and is able to receive the help she needs.

Alzheimer patients have rights and should not be punished for their negative conduct, but caregivers shouldn't have to deal with aberrant behaviors that can cause emotional or physical damage. The harm a caregiver suffers at the hands of a patient should not be excused simply because the patient is not in his or her right mind. If we are stabbed, we will bleed, and our bodies will suffer harm whether the one holding the knife is mentally compromised or not. Likewise, the emotional devastation of abuse should not be ignored no matter the mental state of the abuser.

It is hard to know where to draw the line. The daughter suffering sexual abuse at the hands of her dementia-afflicted dad is a clear-cut situation; she should be relieved of caregiving duties to him and protected from further harm. But what of verbal abuse? Alzheimer patients are often very intelligent and insightful; my mother knows just what to say to upset me most. Sometimes she maligns me so constantly and skillfully that I emerge from her room with tears running down my face--and this is after eleven years of caregiving.

There is no easy answer. As Christians we know that we are to bear with one another in love (Ephesians 4:2), and not to repay wrong for wrong (1 Peter 3:9). We know that suffering produces patience (Romans 5:3), and that workers are to submit to their masters (1 Peter 2:18).  And so when the abuse is not physical, I think most times it is safe to say that we ought to commit ourselves to our faithful creator and continue to do good (1 Peter 4:19).

But when one is undergoing physical or sexual abuse...well, this just differs substantially from my experience of putting up with Mama's hurtful words. Sexual abuse, no matter the mental state of the perpetrator, has long-lasting and heart-breaking ill effects, regardless of the age or relationship of the victim to the abuser.

I am praying now for that woman who asked for help at that forum I attended, help that so far as I know, she did not receive. I pray she finds escape from the oppression she's endured, and healing for the emotional damage she has sustained.
The best online hope of help I can suggest for anyone suffering abuse at the hands of a dementia patient is to call the helpline at 1.800.272.3900. Prepare for the call by writing out a list of specific questions, and do not apologize, act embarrassed, or laugh as though it is no big deal. You may have to seek counsel from several sources before you find the help you need. Seek help, pray, and get others to pray for you. Find someone who understands the devastating impact of the difficulties you are suffering, and who will advocate for you. I pray a way out of the oppression of this sort of abuse for anyone who is suffering in this way.  

***The righteous cry out, and the Lord hears them;
    he delivers them from all their troubles.
The Lord is close to the brokenhearted
    and saves those who are crushed in spirit.

Psalm 34:17-18

Saturday, August 22, 2015

Only One

We all remember the story Jesus told of the Good Shepherd who was willing to leave 99 sheep safe in the fold while He searched for the one who was missing. I’ve always felt kinship to that story because most of my life’s ministries have been to just one person at a time.

My children are 7 years apart in age so that I’ve joked that I essentially raised two “onlys.”   The most effective portion of my teaching career consisted of individualized interventions for troubled readers. And when I’ve taught Sunday school over the years – well, let’s just say I’ve never drawn a crowd. Many Sundays I’ve presented my carefully prepared lessons to just one or two students. 

My books are not best sellers; they average just one sale a week at Amazon. And the past eleven years I’ve taken care of just one little old lady, my mother, who has Alzheimer’s disease. 

Through this lifetime of service to “ones,” the Lord has taught me that He views success very differently than we do.  We look at quarterly gains, area covered, and dollars earned, and if the numbers are pleasing we call ourselves successful.  But in God’s economy, individual lives are of inestimable worth.  

My friend, Abby, over at Little Birdie Blessings, recently posted a link to this blog on her Facebook page (Abby’s blog is beautiful and encouraging, check it out). The quote she shared reached thousands of people, and one lady—just one—said that my blog had been helpful to her on that day. I just smiled because I realized that this woman is so precious to the Lord that it was not too much for Him to spur me to write the helpful blog post and then touch Abby’s willing heart to share it, all so that this one woman who is so precious to our Lord could be helped. 

God doesn’t count success as we do.  The very young and the very old are neglected members of our society; these vulnerable lives are so easily overlooked. They can’t take care of themselves and so God calls us to be vessels for His tender care. When we offer our hands and hearts to the Lord in service to just one person in need, we are pleasing to Him. 

Caregiving and parenting are difficult assignments and often frustrating, but we can put to rest any thought that we aren’t accomplishing very much in this world when the needs of just one person keep us busy. In God’s eyes, that one individual is of great worth, and we are following in the footsteps of the Good Shepherd when we spend ourselves on behalf of just one.

Thursday, August 20, 2015

Find a Little Respite

Caregivers need respite, and by that I mean time away from the responsibilities of caregiving. My favorite form of getting away from it all is not very exciting, but is rejuvenating for me; I putter around our farm taking photos as I go. I find that the beauty of God's creation refreshes my spirit.

I urge each of you to find your own respite and invite you to share a bit of mine over at my other blog today: At Home in Karola, Kansas. You'll find my other form of respite there too, because the imaginary town of Karola is the setting of my novel, The Children Are Tender.  I had so much fun writing this book! The work was all-encompassing so that during the hours I spent creating the characters of Karola, I was given a vacation from the stresses of my caregiving responsibilities.

These two activities--writing and spending time outdoors, have saved my sanity during my eleven years of caregiving. I believe that creative endeavors such as writing, quilting, painting, knitting and crocheting, etc. are wonderful respite activities, and I also think that fresh air and exercise are especially important to the well being of folks who are enduring stress. 

Here's a prayer that caregivers who read this post are able to find their own happy combination of creative activities plus time spent appreciating the beauty of nature so that caregiving responsibilities don't overwhelm. 

Tuesday, August 11, 2015

Father, Forgive Them

Anger isn't a constant state for my Alzheimer's mom; much, even most of the time she is pleasant and quiet. But during her restless times, most often in the late afternoons, she lashes out.

In her anger she feels I am not meeting her needs properly, and she becomes vindictive, trying to think of things she can do or say that will upset me. The anger itself becomes a separate entity that can't be reasoned with. It is no good to point out her pleasant surroundings and the large chart on her door that lists her schedule. It doesn't help to tell her that I'm in her room a minimum of eight times a day, seeing that her needs are met. In these moods she doesn't want explanations, she wants a target. She can't explain why she is so viciously angry, but she is very good at voicing the anger. 

I'm just heart weary.  She surprised me last night by mocking the way I laughed at some little joke my husband made about our silly but sweet yellow lab as we walked with Mom around the driveway, and for some reason this particularly hurt my feelings. I've sometimes felt self-conscious about the way I laugh.  Mom followed her scorn of my laughter with these words:  "My knee hurts, does that make you happy Linda? You like seeing me suffer don't you? Someday you will have to pay for this, the Lord is taking notes of this."

I replied, "Ohhh Mama, you'd better hope He isn't." 

But you know I've wondered about this. In someone who doesn't have Alzheimer's, Mom's behavior would be labeled "sin." Isn't she getting herself into deep trouble with the Lord?

When I brought this issue before the Lord, I instantly thought of Jesus' words regarding the people who tortured and killed him: "Father, forgive them, they do not know what they are doing" (Luke 23:34).

Well...if ever there was someone who doesn't know what she is doing, I'm sure it would be a 91 year old woman who's had Alzheimer's disease for eleven years.  I felt so betrayed when Mom, angered because I hadn't answered her phone call requesting saltines to go with her coke, called 911 and reported elder abuse...but how much deeper was the suffering that the the betrayal by His own people inflicted upon Jesus.

And then I remembered another verse that says whatever we bind on earth is bound in Heaven (Matthew 18:18).

If I refuse to forgive Mom, I hurt not only myself, I hurt her by deepening her sin before the Lord.  If I refuse to pray, with our Savior, "Lord forgive her, she doesn't know what she is doing," then I make it more likely that Mom will remain bound by her own sin even as I allow the crippling effects of unforgiveness to take root in my own life.

"But Lord," I prayed, "She has broken my heart."

In response this thought came: "No, she has not. Your heart is safe in My hands."

Unforgiveness binds us to the ones who hurt us; in a way, it puts us at their mercy. The Bible instructs us to respond to bad treatment with love, and to pray for the ones who persecute us.

These are not happy lessons to learn at the hands of the woman who once adored me and would have been willing to give her own life for mine. The sense of betrayal runs deep. But I'm praying for grace to forgive my mother even as God has forgiven me for my many sins, and to release her from accountability for the wrongs she's dealt me.  If you've also been treated unjustly, perhaps you'd like to pray with me:

Father, we release our loved ones from accountability for the sins they've committed against us. We know You love us and take action against those who hurt us, and so we release them from our blame and any divine rule that would require Your vindication on our behalf. We lift these, our beloved enemies, to You, and we pray: Father, forgive them, they don't understand what they are doing. In Jesus' name, amen.

Comforting Scripture for Caregivers:  

But I said, “I have labored in vain; I have spent my strength for nothing at all. Yet what is due me is in the Lord’s hand, and my reward is with my God.” 
 Isaiah 49:4

...God is the strength of my heart and my portion forever.
Psalm 73:26