An Enforced Schedule of Grief

When my father died thirteen years ago, I withdrew from the shock and grief into a self-protective shell from which I emerged in small increments over years of time. Very slowly, and as I could cope, I dealt with the loss of his presence in my life; and only recently have I come to a point where a sudden reminder of Dad brings a smile rather than a sharp stab of grief.

Caregivers for loved ones with dementia are not allowed this buffer of time that I utilized in the grieving process for my father. We are forced to face the hurt each time we interact with the dementia patient. Every time I enter my mother's room I am confronted by the reality of all I have lost in my relationship with her. For example, one of the first dates that escaped my mother's memory was my birthday. She remembers my cousin Mike's birthday each year, but not the anniversary of the birth of her only child. And despite the fact that she has never yet failed to remember my husband's name, she often calls me by my daughter's name. So often it seems that in every interaction with my mother I am at risk of some unexpected stab of hurt that comes, not as I'm able to face the grief, but according to the whims of the disease that is taking her from me by stages.

On the morning of my December 22 birthday this year, I read Psalm 121 in the English Standard Version of the Bible: "The Lord is your keeper; the sun shall not strike you by day, nor the moon by night. The Lord will keep you from all evil; he will keep your life. The Lord will keep your going out and your coming in from this time forth and forevermore" (Psalm 121:5-8 ESV). Thus as I steeled myself to enter my mother's room and to endure the discomfort of pain of loss of a birthday greeting, I was reminded that the Lord is the keeper of my heart, that I'm not at the mercy of Alzheimer's disease, but instead dwell in the Lord's protective mercy. I found a wonderful commentary on Psalm 121 from Matthew Henry: "The Lord shall prevent the evil thou fearest, and sanctify, remove, or lighten the evil thou feelest."

Despite my awareness that the Lord has lightened for us the evil of Alzheimer's disease, I struggle. I get about an inch from crawling onto the ledge of the Lord's support and freedom from fear and grief, but then I lose my footing and find myself hanging from the very edge of a cliff once again, my fingers slipping while below me swirl black waters of overwhelming grief of loss. Thank God for His patience and mercy.

Prayer: Lord, as caregivers we pray that you set our feet on the solid ground of the truth of the fact that You are sovereign over the interminable grief of bearing with a loved one's Alzheimer's disease. Set our feet on the solid ground of your truth, protect our hearts by the Power of Your Name, work in the hearts and minds of our other family members and grant them understanding, keep us from evil, watch over our lives, in Jesus' Name we pray.

Accepting My Role as Caregiver

A characteristic of many Alzheimer patients is an overuse of paper products. Some patients fixate on Kleenex, shredding or stashing tissues in clothing or other more unusual places. In my Mom's case, chronic sinusitis that is probably exacerbated by Aricept (an Alzheimer drug) causes her to need an abundant supply of tissue. Her trash cans must be emptied twice a day, and yesterday I was on my way through her room dragging a large garbage bag behind me when she began a conversation. I had been Christmas shopping earlier in the day, was tired, and was focused on finishing my chores for the day; but I sat down on her couch to listen, the loaded trash sack at my feet a visible sign of my labors on her behalf.

Mom gestured toward the devotional her granddaughter had lent to her and said, "I was reading this devotion book and at the end of the reading it asks you to list your worries so you can give them to the Lord." She looked at me with a child's wide-eyed wonder and said, "I have the Lord, and I have you. You take care of my needs. I don't have one worry! I have perfect peace!" She smiled happily.

I am afraid that I rolled my eyes heavenward and with more than a tinge of sarcasm said, "Well that must be nice."

She didn't let my sour disposition disturb her--Mom doesn't let much of anything disturb her--and she returned to reading her book, still smiling.

Mom happily partakes of the services I provide for her with no comprehension of the burdens I bear to keep her so carefree. The fact that my mother has no compassion for my weariness or empathy for the difficulties of the jobs I perform on her behalf is the most compelling evidence of her dementia. Earlier in her life she was not comfortable if I so much as offered to get my own glass of water--she would jump up and fetch it for me. Now she sits, complacent, as meals and housekeeping services are provided for her.

That it should be difficult to respond in love to someone who has just expressed glad appreciation for the peace God has provided to them reveals sinfulness in me. God has ordained peace and rest for my mother during these final years of her life. It is foolish for me either to envy her restfulness or to resent her for partaking of it with such contentment. At this point in our lives, my mother's challenge is to bear with grace the confinement of infirmity, while my anointed work is to be her caregiver. I must be careful not to grumble. God doesn't like that.

Scripture: "Do everything without complaining..." (Philippians 2:14).

Do Not Fear...

I am ashamed to confess that although I have walked with the Lord since childhood, I am prone to fear. The trigger for the worse case scenarios that unfold in my imagination is the incomprehensible nature of the evil that can happen, the evil that I read about in the newspaper; the evil that sometimes strikes uncomfortably close to home.

When I shift my gaze from the Lord in order to look at the horror and grief that has happened to other of God's children, Holy Spirit flow stops. I can't see the Lord while I'm empathizing with their pain, and I then lapse to fear for myself and those I love.

When fear is motivating my prayers, the pressure to remain completely open and obedient to the Holy Spirit's guidance becomes intense. I begin to see myself as being in control of whether my own life events and those of people I love unfold for good or for evil. In this state of mind, I believe that I must remain perfectly vigilant (perfectly perfect); because if I fail to hear God's guidance then horrible things might happen.

This idea is based on a fallacy, and the fallacy is the concept that there can be an accident.

Before we are ever created, before God pulls back the bow and shoots us forth, He knows our path exactly. If He chooses to send us forward on a given trajectory, then everything along that path occurs according to His predestined plan; and at the end is glory.

Evil is an aberration, a tear rent in time and space by original sin; but it is not an accident. There is nothing random about the Lord’s control of our lives. God has incorporated into His perfect plan even those horrible events that would have destroyed us if it were not for Christ, so that the weaving of our lives is made more beautiful by those very things Satan intended for our harm. “No weapon forged against you will prevail…” (see Isaiah 54:17).

It is almost amusing that I am able to partake of God's amazing provision for my mother and our family through these five years since her diagnosis with Alzheimer's disease, but at the same time lapse to fear about the possibility of Other Horrible Things. In my perspective, Mom's Alzheimer's hasn't been terrible. We've come through because of God's provision for us, and I can say honestly that His yoke has been easy, His burden light.

I remember a friend whose three-year-old son died suddenly. I walked through this event with her in the Spirit, interceding for her through a darkness of grief when she was plagued with nightmares and tears. One day during that time I was visiting with her and she said, with a kind of amazed honesty, "You know, this hasn't really been that bad." We laughed together out of the shared understanding that the Lord had proven Himself to be sovereign over her terrible loss, and had provided for her through it.

Why, when I've partaken of the Lord's provision so freely through one of the most difficult times of my own life (Mom's Alzheimer's), do I continue to lapse to fear? "I shall fear no evil FOR THOU ART WITH ME" (see Psalm 23:4). With wonderful confidence in His own perfect power and sovereignty over the worse that the enemy can bring, God says, "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). This is my life verse, I have it written on the wall of my bedroom; I often awaken with those words in my mind.

I'm praying today to release my fears and to walk forward with confidence. Our God is with us! We don't have to give way to the despair of fear for the future BECAUSE HE IS WITH US!

Scripture: "The virgin will be with child and will give birth to a son, and they will call him Immanuel" —which means, "God with us" (Matthew 1:23).

No Accidents

I have a small library of often read books, old friends whose content I know is safe and comforting. These include the Mitford books by Jan Karon, the Little House books by Laura Ingalls Wilder, all of James Herriot's books, and a few other volumes whose careworn covers show that they are to me as a favorite stuffed toy is to a child.

These books are scattered through the house and I usually grab one of them to keep my mind engaged while I'm drying my hair each morning. Today I read a passage in one of these books that landed as healing balm over the aching places in my careworn heart. I don't remember which book it was in, so I'll paraphrase it here: The fact is, nothing that happens to a child of God happens by accident.

I knew that. Really, I did. But seeing it in black and white helped me today.

No relationship is safe but the relationship we share with our Lord and Savior Jesus Christ. There is no safe harbor apart from Him. Those we love will let us down, even those who love us the most and who are most dependable. They fall prey to human frailty, perhaps through becoming so involved in their own pain that they can't see ours, or through betrayal, or they get Alzheimer's disease. Other people will abandon, betray, fall prey to sin or disease...and sometimes they die and leave us all alone.

But nothing happens apart from God's will.

God loves me perfectly. He is able to use even those circumstances that seem disastrous to me to bless me. I can trust Him for myself and I can entrust those I love into His capable Hands. He won't let me down. He won't let them down. He can be depended upon to bring forth beauty and blessing from the ashes of human failure and disappointment.

Father God, bless and protect those we love today. We praise Your Name.

Scripture: "And we know that in all things God works for the good of those who love him, who have been called according to his purpose" (Romans 8:28).

Checking In

My life has been very busy and stressful these past few weeks as I publicize My Mom Has Alzheimer's: Inspiration and Help for Caregivers. I honestly did not understand, when I'd completed writing the book and had found a publisher, that my job was not done! Two book signings, a newspaper interview, and two radio interviews later, I am somewhat wiser and very tired. I much prefer the writing to the publicizing.

This afternoon Lloyd Hildebrand, CEO of Bridge Logos Foundation (the company that published my book) interviewed me at Blogtalk Radio. You can hear the interview by clicking the link in the side bar to the right.

Lest any of this goes to my head, my mother set me straight the other night. She called me on my cell phone (the instructions for making this call are taped to her phone) and said, "We need to get someone in here from housekeeping to clean up this mess the cat made on the floor."

Since I'm the nearest thing to housekeeping staff that Mother has, a few minutes later I was on my hands and knees scrubbing aforementioned mess.

The Lord knows how to keep us humble!

Sharing the Lord's Perspective...

I love my mother. There is no one else who values her human life more, and no human being will grieve more when she dies. There is, however, someone who holds her life, her human, temporal life, more precious than I do; but He is not human, He is God.

We human beings tend to place more value on the life of someone who is a productive member of society than we attribute to that of an elderly person. Christians tend to share this perspective. When we visit a nursing home we might question the Lord; if we are headed to an eternity with God in a far better place, why linger? I was less than a year into caregiving when I began to wonder why the Lord had allowed my mother to remain only to descend into Alzheimer's disease. I dreaded and even feared my mother's death, but once I'd read about the final stages of Alzheimer's I didn't understand why the Lord would consider allowing her to stay for an extended length of time if that awful final chapter was all she had before her.

With this attitude I ran into the immovable wall of the Lord's correction. I became aware of His intense love for my mother, and I caught a glimpse of the tremendous value He places upon her life. I understood that He expected me to be His heart and His hands in ministering to Mom's physical needs, and that if I opted out of the assignment He would deal strictly with me because of my disobedience and arrogance.

The Lord sees all of us who belong to Him as being His children. Wrinkled bodies and forgetful minds don't cause Him to place less value on our precious-to-Him lives. I've become increasingly aware that the Lord is much more concerned with the giving and receiving of love than He is with any other human endeavor or accomplishment. He does not judge us by the amount of work we accomplish (or by our money making potential), but by the attitudes of our hearts.

Once, when my daughter was small, she asked me if our dog Rusty could read. I replied, "No, Honey, he can't read."

She thought this over and then asked, "Well, if you worked hard to teach him could he learn to read?"

Again, the answer was, "No." She thought this over carefully and then inquired, "But does he understand love in his heart?"

Yes, Rusty understood being loved. In fact, the canine ability to offer unconditional love is a reason often cited for owning a dog.

Now if one of God's creatures can be valued highly simply for giving and receiving love, why are we so ready to dismiss our fellow human beings when they lose the ability to pay their own way?

Loving and being loved remain to the last breath, and we who know the risen Christ are assured that love will remain into eternity with Him. I'm praying today for the elderly and infirm. I pray that those of us who still consider ourselves to be productive according to the world's standards will comprehend the precious value of a grateful smile or a squeeze of the hand when words have gone. I pray for grace and wisdom to share the Lord's perspective of my mother.

Dare to be Dory

In the wake of my book's publication, I'm experiencing a bit of attention that is the nearest thing I'll see in my lifetime to "15 minutes of fame."

It's excruciatingly uncomfortable, and for reasons I can't fully analyze but are probably not noble; it makes me nervous. In an effort to change my attitude my daughter cited an illustration from the movie "Finding Nemo." Marlin and Dory are trapped in the belly of a whale. Dory's found it great fun to slide down a portion of the whale's internal anatomy and as she rushes down she yells "Wheeeeee!" Marlin, by contrast, is fruitlessly butting his head against the wall of the whale's stomach in an effort to escape. Melinda said, "Be like Dory, Mom. Just relax and enjoy this ride."

I did not point out to her that Dory quite obviously has Alzheimer's disease.

The Lord has issued warnings to me. I am to know nothing but Christ and Him crucified, and its ok if I feel fear (See 1 Corinthians 2:2-3). And, I am to guard myself against pride. The Lord's teaching on this subject is this: if I do not seek glory for myself, then I will not be ashamed. And yet He's also made clear to me that I have been set in charge of the distribution of a gift that He has provided to others through me, and that I must not turn away from this Holy charge.

The important element in any Kingdom endeavor is not the person God uses to spread the message, but the message itself. The central messages in My Mom Has Alzheimer's are twofold: 1) There is no obstacle we can encounter in life over which God is not sovereign, and 2) We must give attention to the ways in which we respond to our loved ones who become elderly and infirm. Raising emotional barriers in an attempt to protect ourselves from impending loss results in an impoverishment of our own hearts and those of our loved ones. A refusal to remain emotionally connected to those who are in the process of leaving us makes the final separation more difficult rather than easier.

This morning I wrote the following in an email to a friend:

I get so worried about the wrong things--this morning it is a little money matter that shouldn't really cause me a second thought. There's sin behind this worriment; pray that I am able to rest in the Lord's Sovereign control over my book, my children, and my life. All of those "my's" are suspect; there can be sin lurking in a "my." If all I have and am are His, then I shouldn't have much occasion to use the word "my." If I am His instrument, then I need to think carefully before I blow my own horn!

Please pray for me. Pray that I don't fall to fear of what people think, but keep the Lord firmly in my sights. Pray that I don't fall to the sin of pride. Pray that I fearlessly speak the message with which God has entrusted me on behalf of the elderly who can no longer speak for themselves, and for the caregivers who are battling grief and weariness.

Scripture: "Pray that I may proclaim it clearly, as I should" (Colossians 4:4).

Powerpoint and Links for My Mom Has Alzheimer's...

I've worked hard today preparing a Powerpoint presentation for my book, My Mom Has Alzheimer's: Inspiration and Help for Caregivers. I'll use the presentation to accompany book talks as soon as the book is released, which will probably be toward the end of this month. Please pray for me, that I will have courage to take hold of that for which Christ has taken hold of me (see Philippians 3:12).

I've uploaded the Powerpoint further down in this post. Advance the slides manually, by clicking on the right arrow. The notes for the slides did not come through, and there are some formatting errors that occurred when the files were uploaded, but you can get a feeling for the presentation and the subject matter of the book by scrolling through the slides. The book can be pre-ordered now at Amazon.com. When my copies arrive I'll be selling personalized, signed copies at my web site. Thank you for joining your prayers with mine for the book to find its way into the hands of those who can benefit from the guidance God has so graciously provided to Mom and me.

Making the Bitter Sweet

Blessed are those whose strength is in you,
who have set their hearts on pilgrimage.
As they pass through the Valley of Baca,
they make it a place of springs;
the autumn rains also cover it with pools. [a]
They go from strength to strength,
till each appears before God in Zion.
Psalm 84:5-7

I awoke this morning with this Scripture in my mind. I remembered that the word "Baca" means bitter, and this in turn brought to mind a quote from my book for caregivers, due to be published by Bridge-Logos next month:

I felt an absolute dread of my mother's demise, not just over the fact that she would at some point die; but I was afraid of the loss of function that might happen before that time. The ingredients of the cocktail of grief of which I had unwillingly partaken included terrible pity and love for my mother, anger, resentment, guilt, and fear of the future. This draught was complex and it was bitter. It was as though I didn't want to analyze the components of my pain, but I had no choice about dealing with the results of having drunk such a bitter brew. I didn't feel so good!

Those of us who are Christians live our lives here on earth with our hearts "set on pilgrimage" (See Psalm 84:5, above). We are on a journey home, and our life experiences are like scenery on that journey. We will face difficulties and there will be sorrows, but the bitterness of those experiences is made bearable by the hope we hold in our hearts. Praise can flow in the midst of sorrow because he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead (1 Peter 1:3).

The art of living a Godly life has to do with making the bitter valley a place of refreshment. That’s why things like cleaning out drawers and doing laundry and preparing meals (or taking care of an Alzheimer patient) can be Godly pursuits.

The passage from Psalms doesn’t say that we simply provide little oases of refreshment here in this bitter valley, but that we transform the bitterness into sweetness as we pass through. The sweetness travels with us, emanates from us; and like the Israelites sitting safe and free from plagues while the Egyptians across town suffered affliction, we have been enabled to stay free from the corrupting and embittering influences of the world by the power of the Holy Spirit within us.

Lord show me today how to abide in Your presence so that my words and actions become a sweetening agent for my mother, my family, and myself; an antidote for the bitterness of coping with Alzheimer's disease .

I Can't!

I believe that God's light shines uniquely through every one of us, and so as we learn from one another, we gain a more comprehensive knowledge of the Lord. In this way the body of Christ is knit together and strengthened.

During the past five years I've written about my experiences as an Alzheimer caregiver, seeking God's guidance and then recording the results. The portion of God's light that shines through me in a way that might edify others has little to do with the physical labor of caregiving. I came to understand this truth because when I was tempted to spend time describing specifics of my labors for Mom, I often felt the Holy Spirit's restraining influence. The anointing with which the Lord has entrusted me has to do with making a successful transition from a past relational role to a new identity and ministry as a caregiver.

The Lord often calls us to serve in ways for which we are not naturally well-suited. I remember when I received God's call to be a teacher. I had a passion to help small children to avoid spirit wounds, but few other qualifications for the job. I was not patient, or particularly maternal. I was not a person who could be spontaneously creative, and so every classroom session had to be preceded by hours of preparation and even rehearsal. Filing the deluge of teaching information and materials in a manner that gave some hope of future access was burdensome and time consuming, because I was not by nature orderly or organized.

Furthermore, my nerves just weren't created to withstand the strain of teaching. I developed insomnia, and for the 15 years that I taught first and second grade I often operated on just three to five hours sleep a night. I would occasionally not sleep at all.

The logical recourse would have been to find another line of work, but the Lord kept His hand upon me and I knew that I was where I was supposed to be. And so I had to learn to walk in His strength and not my own.

You see, we human beings will not access the Lord's strength as long as we are able to utilize our own. Whenever I've cried out to the Lord saying, "I can't," I've felt his gentle strength and the warmth of His smile. I hear Him say, "I know you can't, Child, but I can!"

Fast forward twenty-five years from that call to teach, to a chilly March day in 2004 when Mom's nurse practitioner said, "Your mother has Alzheimer's disease." As an only child I knew that I would become my mother's caregiver by default.

"Oh Lord," I cried, "I can't!!!!"

But I felt His gentle strength and the warmth of His smile...

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If we say, "No," to God's call to serve based on our own "I can'ts," we remove ourselves from the influence of His sculpting hand, forfeiting great blessing.

Scripture: "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me" (2 Corinthians 12:9).

God's Love for Mom

In the five years since Mom's diagnosis with Alzheimer's disease, I have learned a little bit about the Lord's love for her. He loves her intensely, passionately, and with a Holy focus and constancy that is not mirrored perfectly by any human experience or emotion. It is a little bit like the first flush of romantic love, when the beloved consumes one's every waking thought. It is perhaps most like a mother's intense, protective love for her tiny and helpless baby.

God's love for Mom isn't much at all like a child's love for her parent. Child-love is somewhat selfish, and that's how I loved my mother before I became her caregiver. I was the child of a mother who always put my needs ahead of her own. I expected this of her, and even into adulthood I was guilty of acting churlish toward her if ever she seemed to neglect me. When I began to understand that the Lord had anointed me to be Mom's caregiver, I found that the love I'd held for her as my mother was completely insufficient to move me to serve her needs as the Lord was asking me to do.

When my mother became ill, I didn't at first understand that the Lord expected me to manifest His love to her. I had the idea that the Lord's love would back-light my determination to be a good daughter, and I went forward in human strength. Out of my intense need for my mother's love and terrible grief over the prospect of losing her, I fought hard to provide the best of care for her; but I couldn't sustain the effort. As a newly diagnosed Alzheimer patient, Mom viewed my efforts to help her as being intrusive. When human love is met with resistance or ingratitude, resentment and anger is the natural result.

God's love for Mom has nothing to do with whether or not she deserves it. God's love for her has to to with God Himself. Mom belongs to Him, and so as a sheep in His pasture, He cares for her according to His own Holy standards. I remember the discomfort of the dawning realization that the Lord had chosen me to be a human vessel through which He would manifest His love for His beloved Anna Ruth. He is the One and Only God, the God whose Holy love allowed Him to sacrifice His own son in order to reconcile fallen, sinful humans. His love is not reasonable or logical. There is no consideration of cost, no balance sheet that weighs Mom's needs against mine, no remonstrance saying, "You've got to consider your own needs and those of your family." God has never once said to me, "You've got to take care of yourself." He expects me to trust that He is my caregiver.

I have learned to respect God's love for my mother. In learning of God's love for Mom and how He expects me to manifest that love, I've gained a greater awareness of His love for me.

Scripture: "My command is this: Love each other as I have loved you," (John 15:12).

Laughter

Little moments of shared laughter go a long way toward making the burdens of dementia endurable for both caregiver and patient. At the heart of the grief of Alzheimer's disease there is a little glimmer of joy springing from the fact that no matter what state our loved ones are in, at least they are still with us. Shared laughter brings that joy to light even if just for a moment.

I love to laugh with my mom. Before she was sick we shared the same sense of humor, and when that surfaces now I feel such gratitude that I still have her with me. Of course just behind that emotion there are tears because she's obviously in the process of leaving me; but for today she's here, and there are opportunities to connect with her still.

On a rainy afternoon in 1980, my mother and I sat in the waiting room outside my doctor's office. I was expecting my first child, and that day we shared the waiting room with a half dozen other women, all of whom were in varying stages of pregnancy. We were not a talkative group and there was silence in the room when a UPS truck pulled up. The driver sprinted to the door, stuck his head into the room and shouted, "Delivery!" He then focused on the startled faces of the group of pregnant women, blushed, dropped his package on the floor, and fled. Mom and I both burst into laughter, and when we realized we were the only ones laughing, the joke became funnier still. I'm not sure why the other pregnant ladies didn't connect the word "delivery" with the imminent arrival of their own special packages, but Mom and I sure did. And why didn't anyone else think the UPS man's obvious embarrassment was hilarious?

Move forward nearly thirty years to a hot July afternoon in 2009. Mom and I were being chauffeured to an appointment by my husband. He had taken an afternoon off from farming, which was a real sacrifice of love for him, and he was not in the best of humors. Mom and I both sensed this and were a little giggly--his taciturn face and abrupt answers to our lighthearted comments were not bringing out the best in us. Mom looked in the mirror and said, "My hair sure does look nice when I'm headed to the beauty shop to get it fixed."

"No, Mom, we're going to the eye doctor," I said.

Exasperated, my husband spoke slowly and clearly, "We are going to the dentist!"

Mom and I both laughed until we cried, as my husband shook his head in resignation. We were indeed headed to the dentist's office for Mom's six month checkup.

Sharing laughter with Mom reminds me of how blessed we are to be together still.

Scripture: "A happy heart is good medicine and a cheerful mind works healing..." (Proverbs 17:22 AMP).

Patient/Caregiver Perspectives

My mother's journals reveal telling insights into how her mind does and does not function. Her journaling may give help to Alzheimer's caregivers whose loved ones are unable or are not inclined to put their thoughts into words. Here is an incident that occurred yesterday, first from my perspective as caregiver and then from Mom's perspective as patient:

Caregiver's perspective:
Yesterday I arranged a little lunch date for Mom, her respite care provider, and me. We ate pizza, chatted together, and Mom enjoyed the interaction. Later in the afternoon I brought Mom a snack of fresh fruit and graham crackers, and a couple of hours later I prepared and served her supper. In the evening I was tired, having shopped for groceries and prepared food for a busy weekend that includes company and a church dinner. I took Mom for a walk during which we chatted about the events of our day. I had returned to my part of the house to prepare her evening snack and sort her night meds when I heard her yelling. I went in and saw that she was was feeling neglected and irritated. "I just thought I'd let you know that whenever anyone can spend a little bit of time talking to me, I certainly would appreciate it," she said. I'm sure I displayed at least a touch of righteous anger. I told her I was busy and went out and shut the door. A few minutes later I brought her the snack and medicine and told her good night. I admit I feel the same anger once again as I write these words; a good portion of my day had been spent in acts of service for Mom and yet in the evening, she concluded that no one cared about her because she felt a stab of loneliness.

Patient's perspective (from Mom's journal entry):
I must have had a little brain glitch. Suddenly I felt need for companionship and conversation so I yelled, "Hello!" until someone came to the door. I told them what I wanted and they just stared at me a moment--turned and left.

An Alzheimer's patient loses the ability to utilize several sources of information simultaneously. Those of us whose minds are still functioning more or less normally don't realize how often we need to think about more than one aspect of a situation in order to draw an accurate conclusion. Furthermore, the dementia patient has lost confidence in his/her own ability to perform the simplest of tasks, but retains the ability to ask for help. Thus, the disease causes a cluster of symptoms that in the general population could justifiably be labeled "lazy" and "self-centered." It is up to the caregiver to recognize these behaviors as being clinical effects of the disease. When the only information the patient is able to draw upon comes from the present moment, then oftentimes those conclusions will be inaccurate.

I'm ashamed to say that in response to the situation I've shared above, I displayed irritation toward my mother. However, the curse of the forgetfulness of Alzheimer's also contains a hidden blessing, because when I returned to Mom's room a few minutes later armed with a snack and a cheerful attitude, all was well between us once again.

Scripture: "Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you" (Colossians 3:13).

Silver Linings

I try to look for the few silver linings to our Alzheimer's clouds. As Pa Ingalls said, "There's no great ill that doesn't bring some small good..."

Here's my latest:
I'm trying to do my Christmas shopping in July this year--a first ever for me. I ordered a beautifully painted sign for Mom that says, "Amazing Grace." When it came I was unable to keep from showing it to her, figuring I'd go ahead and put it up for her now and buy another gift for her to have in December. She loved the sign! She ooohed and aaaahhhed over it and we planned where to hang it. It was the most pleasant interchange we'd had for awhile. I took it back to my part of the house thinking I'd put it up later but didn't get it done. A few days later I took it in to Mom again, and, not remembering that she'd ever seen it before, she had the exact wonderful reaction! I loved seeing her loving it! A plan hatched in my brain--I can multiply the joy of gift giving by presenting this one gift every week or so until Mom wises up to me...and I can then wrap it up and give it to her for Christmas! Talk about getting my money's worth out of that gift...we both get to enjoy it so much more because of Mom's AD! Just a little joy multiplied, but there's my silver lining for the day.

I posted this story at the Caregiver's forum at the Alzheimer's Association's message boards, and one lady commented, "Truly the gift that keeps on giving! :)"

Scripture:
"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus" (1 Thessalonians 5:16-18).

The Importance of Intercessors

Those acquainted with grief are aware of how it can lie dormant for a period of months or years only to come surging to the surface at the most inopportune times. This sort of grief tends to creep insidiously to the surface, gaining a sure foothold before we are aware of its presence.

In the midst of a frantically busy holiday weekend, I was nearly overwhelmed with grief over loss of the family traditions that died with my father's physical death and my mother's Alzheimer's induced inability to remember. How could I have forgotten that the fourth is the holiday that I miss having parents the most; how could I have allowed that terrible sense of loss to advance to flood stage before awareness of it reached my conscious mind? Of the catalysts that open the gates for this type of grief, a dear sister in Christ says it's as though..."we’ve been swept onto the Grief Express, bulleted back in time and soul to those first days..." (Melody's blog).

I was doing a fair job of keeping the grief waters dammed behind a determined smile and a busy schedule, when I walked into my mother's room. In a high pitched, little girl voice, she was singing "Let Me Call You Sweetheart," a song she's often told me was sung to her by her father when she was small. I felt her terrible loss of no longer being a little girl whose daddy adores her, and I turned and literally ran from the room. The pathos of my mother's situation had broken the barriers that had been keeping my own sorrows at bay. When I came to myself, I was clutching the kitchen counter, drawing in deep breaths, knowing my blood pressure was too high. I knew I could not cope any longer with the circumstances of my life and I felt desperate to escape. I was actually thinking I'd just write a note, pack a bag, and go to a motel for the weekend. I pulled out my phone and texted three friends, asking for prayer. Almost instantly my body relaxed, my emotions calmed, my thinking cleared. Next moment I received replies from my friends assuring me that I was being lifted to the Lord in prayer.

The remainder of the weekend was not easy, but I was strengthened to bear the weight of the responsibilities I needed to fulfill, and the grief receded. There is no doubt at all in my mind that this ability to cope came as a direct result of the intercession of my faithful friends who know the power of prayer.

Today I emailed the friends who prayed for me and closed with these words: Thanks be to God through Jesus Christ our Lord that we have one another. Thanks be to God for Jesus and His availing Blood, for His forgiveness, for His grace, for His mercy and
help. I praise Him.

Scripture: "Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective" (James 5:16).

Difficulties

Perhaps I don't write enough about the difficult aspects of caregiving.

With God's guidance I've set up rules for myself to follow regarding anything I write about Mom. First of all I must honor her as my mother. The Lord has made it clear to me that the strong must serve the weak, and my mother is weakened by disease (see Romans 15:1). Jesus washed feet and didn't respond to abusive words; that's because He knew His own strength. His rule was that He was governed by God's will and God's love, and this rule must govern me lest I fall into disobedience to the most Holy God.

However, other caregivers might surmise there is nothing for them to gain from reading about an experience that's all sunshine and roses as compared to their own difficult journeys. And, since God's power is made perfect in weakness, I won't hold back from writing some humiliating truths about my own weakness today.

Here is my confession: In five years of caregiving, I have never adapted to the task of bathing my mother. She is in stage 5 of Alzheimer's disease with just a few beginning characteristics of stage 6 (click here for stages of Alzheimer's disease from the Alzheimer's Association). And so, if I lay out washcloths, soap, and clothing; she is still able to wash and dress on her own each day. Based on her behavior when I help her shower, I think she probably errs on the side of repeating behaviors (such as washing her face several times) rather than omitting them altogether, and so she is very clean.

However, she is unable to shower by herself, and so Saturday is bath day. Using words Ma Ingalls might have uttered, I playfully tell Mom, "You've got to go in all over at least once a week. Anything less is just not what decent folks would do."

I dread bath day, and in five years my angst has not decreased at all. In fact, in some ways it's gotten worse. I have always had a sensitive nose and a stomach that responds to my emotions, but the past few weeks the merest whiff of any normal body odors not my own has caused my stomach to churn. Last week on bath day I became so nauseated that I left my mother perched on the shower seat and fled from the room to phone a friend to pray for me. The fact that I was almost immediately better when she began to pray reveals that this is a spiritual battle. This week in the middle of the procedures, I sent a panicked text message to my daughter for prayer because I had become nauseated and emotionally upset. My knees were weak and actually buckled at one point, causing me to lose my balance. I feel ridiculous confessing all this.

Why don't I find someone to help me, you ask? My Mom does not yet qualify for Medicaid and I was quoted a price of nearly $150 when I attempted to find someone to hire to help . But beyond the expense is the fact that the thought of hiring a stranger to bathe Mom horrifies me. I understand her disease and her responses, I know her, and I love her. For the most part, I've learned to respond in love when she snaps at me out of frustration or weariness. If she were rude to a stranger during the bathing process when she is so vulnerable, what would that person's response be? At the very least most people in the world would respond in kind. I hate the thought of her being cowed into submission by someone unfamiliar to her. I feel so protective of her poor old body. While Mom is aware of who I am and still feels modest or afraid around strangers, I believe that this bathing ordeal is an anointed task that I am to perform. It's my job.

The Lord has shown me how to cope effectively. When I have an intercessor I am able to proceed as though I were a stronger person than I am.

The point of this entry today is the importance of humbling oneself to ask for prayer. If a caregiving task is difficult or even if it is abhorrent; this doesn't mean that we as caregivers need to be excused from the unpleasant task. We can ask God to for strength. We can ask friends to pray.

Scripture: "Dear brothers and sisters, pray for us" (1 Thessalonians 5:25, New Living Translation).

Comforting With the Comfort I've Received

For two years I have been praying that other caregivers will benefit from the comfort the Lord provided me as Mom and I began our journey through Alzheimer's.

I began the writings that would eventually become a book manuscript in 2004, the year Mom was diagnosed with Alzheimer's disease. Those first journal entries were therapeutic and necessary for my emotional health as I transitioned into the role or caregiver. It was spiritually cathartic to fight out those battles through writing with the Lord at my side; analogous to laboring and giving birth. However, each subsequent reading is like laboring to deliver the same child again; rather than allowing the memory of the pain of the travail to fade, I am forced to relive it. This is one reason that I was so exhausted at the beginning of summer. I’d completed a marathon rereading of the manuscript, necessitated by the time delay caused by the economic crisis and my publisher’s subsequent indecision over whether to go ahead with the book. When they decided to publish the book in fall of 2009, I had about three days to zip through the manuscript and make needed changes, and it was beyond wearing, beyond exhausting; it was devastating emotionally. I wrote the book one day at a time, one pain at a time, one issue at a time, but this desperate reliving of the travail of moving into the role of caregiver was like two year's labor being forced into three days time; in a word, awful. And now I’m beginning another review of the manuscript in order to prepare for a web radio interview in late November. I can go slowly and prayerfully this time through.

It is a part of my ministry on behalf of other caregivers to offer myself to this labor once more. The Lord has allowed my caregiving burden to be relatively light; I have not thus far suffered the 24/7 physical labor that occurs for some caregivers. My mom’s particular set of Alzheimer's symptoms have just happened to be things that generally made it easier for me to take care of her rather than more difficult. I have been so blessed, and it seems to me that something is expected of me in return. As I suffered through each phase of the emotional toll of caregiving, I had the luxury of time to bring those issues before the Lord and to record His guidance. It is my prayer that people who do not have the time to wrestle these issues out before the Lord can benefit from the fruits of my labor. I believe that the Lord wants to bring rich comfort and guidance to those who are undergoing that terribly difficult transition into the role of caregiver for a loved one who has dementia. It’s an especially difficult life change to accomplish when there is a role reversal; when the patient is the one who in the past fulfilled the role of caregiver in the relationship.

I have been posting at the Alzheimer's Association's message boards. The boards offer a wonderful opportunity to exchange helpful information and to share joys and sorrows, but reading other people's stories has broken my heart. I pray that my book will help those poor caregivers who need encouragement and hope so desperately. By God's grace and through His guidance I have been given real help for the emotional and spiritual suffering caused when a loved one is fading into dementia. Pray with me that My Mom Has Alzheimer's: Inspiration and Help for Caregivers reaches those who need it.

Scripture: Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows" (2 Corinthians 1:3-5).

Whispering Hope

I delivered Mom's evening meds at 9:00 this evening, as usual. I was startled when I offered the little cup of pills only to have her snatch it out of my hand in one angry movement. She spat out, "Did you ever just want to have a mental fit?"

I was so surprised that at first I just froze and stared at her with my hand still outstretched, but then caregiving instincts surfaced and I stepped back, appraising her carefully from head to toe. Nothing seemed amiss other than the angry expression on her face.

Her voice softened and she said, "Oh, I don't know if I can make you understand." She took a deep breath and closed her eyes. "It's a feeling of being useless. You just ask yourself, 'What good am I?'" She opened her eyes, downed her pills, and set the container aside. Matter of factly she said, "I'm questioning the Lord and that's a sin. Besides, I shouldn't say anything because no one cares or wants to take the time to understand."

I sat down. "The Lord is using you to bless us," I said. "Having you here has allowed me to work just half time because you pay me a salary. I love my job now. And just think, if you hadn't gotten Alzheimer's, we'd probably never have built this beautiful addition onto John's and my home. We'll enjoy this for the rest of our lives, thanks to you and Dad."

Mom looked directly at me and then, with no indication of having processed anything I'd said, repeated almost verbatim the same speech she'd just finished about feeling useless and how no one cared or wanted to take the time to understand. I realized she was looping (my coined term for the way she will sometimes repeat the same series of comments over and over with just a few seconds pause between) and to break the loop I said, "I think you do a great job Mom. I'm going to bed now, good night." And I went out the door. As I left I looked back at her. She was shaking her head and rolling her eyes--I'd proven her point. Her perception was that I didn't want to take the time to understand. I'm sure that if I'd remained in the room she would have repeated the same information again. Perhaps I should have tried harder to break the loop, but I've learned through experience that this is difficult to accomplish, especially in the late evening.

I was shaken because for a moment I'd let my caregiving persona slip and had spoken to Mom as I would have in the past, when a true reciprocal conversation was possible. My dad's been dead 12 years but I've never forgotten his face, or the way his hands looked, or how he grinned and wore his hard hat at a jaunty tilt on the side of his head. But tonight I couldn't remember my mother as she used to be. That woman has been overshadowed by the mom I now have, the one who had just hurt my feelings by not hearing or understanding me when I tried to share my heart with her in order to comfort her.

The Lord directed my thoughts to a scene from The Lord of the Rings: The Return of the King. Samwise is attempting to refresh Frodo's heart by reminding him of the beauty of their home, the Shire. "Can you remember, Mr. Frodo?" asks the faithful Sam. But Frodo, injured by the journey and carrying a heavy burden, could not remember. Later, after the ring is destroyed, Frodo says, "Sam, I remember now..."

Tonight I felt frightened of forgetting the wonderful mother I once had. I feared that this travail through Alzheimer's disease would blot out my memories of who my mother once was because of who she has become. I believe the Lord has told me tonight that once the caregiving burden is gone, that my memories of my mom as she was in the past will be restored. A further and more glorious truth is that once Mom's burden of Alzheimer's disease is removed and she is safe at home in the Lord, her memory will be restored (see Philippians 3:21). This Alzheimer's burden is temporary.

There's joy and rest to be experienced here and now, in the midst of this journey, and in the Lord both my mother and I have hope for tomorrow as well.

Scripture: "...hope we have as an anchor for the soul, both sure and steadfast" (Hebrews 6:19 KJV).

Lead (as in the heavy metal) Balloons

I have high cholesterol and am low thyroid. Over the past ten weeks I have struggled mightily to lose a mere five pounds; a paltry number that my younger, healthier body would have released in just a couple of weeks' time and with less effort. This morning I woke up, read the first two chapters of Joshua, and determined that through self-discipline and obedience to the Lord that I was going to prepare to cross the Jordan into the Promised Land of freedom from chubbiness.

I poured a bowl of high fiber cereal and then went into Mom's room for a cup of coffee from our communal pot. She was in bed, covered cozily with a quilt, the cat curled at her feet.

"I would like a sausage and egg sandwich please, on toast, light on the mayo," she said.

This lead balloon didn't make it over my head--it bonked me smack between the eyes. Reeling with the unfairness of the fact that my 85-year-old mother does not harbor a whit of guilt over her extra pounds nor despite her fondness for fried foods does she have high cholesterol, I responded with silence and attempted to tiptoe from the room, pretending not to have heard her request. I'd just reached the door when she said, "Hello? Did you hear me?" And she repeated her desire for a forbidden-to-me (and imprudent for her) cholesterol laden breakfast.

"We have no sausage," I lied. To further clarify I added, "You always get your own breakfast." And then, unwisely, "It's the only meal you get on your own."

She ignored my jibe regarding her lack of self-sufficiency, but there was a dangerous edge to her voice as she said incredulously (as to the waitress in a second rate cafe), "You don't have sausage? Well may I at least have an egg?"

What sort of a person would deny her aging mother an egg?

At this juncture I departed completely from wise caregiving practice. I did not tell a kind-hearted therapeutic lie (I am so sorry we have no eggs or sausage because of my special diet, but when I go to the store I'll buy you some Jimmy Dean sausage biscuits). Instead, I attempted to elicit her maternal sympathy. I explained about my high cholesterol, and how I was working hard to lose weight and that it would be difficult to prepare a sizzling fried egg topped with a fragrant sausage patty when I could not partake myself.

In long-suffering tones she replied, "Forget it. I don't know why I ever ask to have something I want. I'll just have toast." (a dry crust of bread, a bowl of stagnant water)...

I can never beat my mother on her own playing field. Laden with guilt I nearly ran into the kitchen, found the package of sausage patties in the freezer, and prepared one for her. I took it in and left it on her counter, where she will find it when she makes her morning toast.

But she by golly didn't get an egg.

Conversational Challenges

Talking with someone who has Alzheimer's disease can be a challenge. For example, here is an exchange that took place between my mother and me today:

(I hear Mom sneezing and open her apartment door)
Me: (Cheerfully) I hear someone sneezing in here!
Mom: (Indignantly) Well, it's cold in here.
Me: (Somewhat taken aback) No, I just meant, I heard you sneezing...
Mom: Well, it's cold.
Me: (Trying to change the subject) I've just always thought its cute the way you sneeze, with that little scream at the end, and now I have unintentionally started sneezing the same way.
Mom: (Huffy) Well I don't do it on purpose.
Me: (trying to make peace) I'll adjust the air conditioner to make it warmer.
Mom: (Dismissing me) I'm not cold. (Returns to reading her book.)

Now, two things should be apparent from this entry: 1) Caregivers must keep a sense of humor, and 2) Caregivers must not hold Alzheimer's patients accountable for the rules of polite conversational interchanges that govern the rest of the world.

In other words, don't hold an Alzheimer's patient responsible for behaviors she can't help.

Easier said than done, but this time I think I managed.

Enjoying Mom Today

I've been struggling to cope with feelings of exhaustion, but in the midst of too little sleep and too much activity, an odd thing has happened. I've become more able to receive my mother's sweet expressions of gratitude toward me, and her constant affirmation that I am pretty.

I'm 55 years old, a little bit overweight, and when I head into my Mom's room to clean her bathroom or gather her laundry I'm rarely dressed to impress. Nevertheless, I am pretty to my mother, and she often tells me so. Over the years since Mom came to live with us, I've often had to hide irritation when she compliments me in this way. I've come to understand that this inability to receive her love and approval is grounded in grief. When Mom expresses love to me I am unable to keep an emotional distance from her, and I feel the sharp pain of impending loss. I can't cope for long with the terrible sorrow that bubbles up to the surface when my mother beams love in my direction; I'm losing her, what will I do without her?

But in the same way that my toddler grandson has no time for a hug unless he is tired or sad, my exhaustion this week has allowed me to be more open to the solace of Mom's loving words. Tonight I'm praying for the ability to receive my mother's loving words and to express love to her in return. I pray for the ability to enjoy Mom while she is here, and to trust the Lord for the time when she will no longer be with me.

I can't practice ahead of time for the sorrow of living in a world that does not have my mother in it. The Lord hasn't yet equipped me for that loss because that time has not come.

Lord help me to enjoy Mom today and to trust You for tomorrow.

Caregiver Syndrome Again

I had noticed Mom was not thinking as clearly as usual, so last week I took her to the doctor to have her blood sugar checked. They also took her blood pressure and did a cholesterol panel.

Every one of her numbers was better than mine. Lower blood pressure, better fasting blood sugar, and lower cholesterol. I stared at those results, comparing them with my own, and resentment toward my mother rose like bile in my throat.

I'm so sad and frustrated and TIRED. I know it isn't easy having Alzheimer's disease and I know that Mom has trials to bear that have to do with the forbearance necessary to cope with being an invalid. For the most part, she's borne these trials with grace. BUT-- her life seems so easy by contrast to mine. She sits in her chair and reads her books and listens to music and has all of her meals delivered. If a light is in her eyes, I turn it out. If it's too cool or too warm in her apartment I adjust the temperature. If she's out of toothpaste or soap or washcloths I fetch them for her. I've taken a cat into my home for her sake--A CAT-- (and trust me, this is something I would NEVER have done otherwise) and this particular cat throws up on a regular basis. I clean it up. I could go on at great length (gory detail) about the details of caregiving that I absolutely hate and have to do on a regular basis. Bathing my mother tops the list of the chores that I dread. And here's a ridiculous little confession: I resent paying her bills so much that I usually let her phone bill go overdue. How's that for infantile behavior on my part?

I poured out these complaints to the Lord and heard, "Could it be, Child, that you are not appropriating My strength and My help?"

Well yes probably so. Oddly this did not comfort me today--it just seemed like something else I've failed to do.

I want a break and there's no end in sight. Today I feel utterly frustrated and tired, but I'll get out of bed (where I've taken refuge with my laptop and my coffee cup) and I'll put one foot in front of the other and I know that the Lord will meet me with His strength and His help. I know it because He's been faithful to me every step of the way of this caregiving journey. I praise His Name.

At times I've felt like I might not survive the pressure of taking care of Mom. I've feared that the high cholesterol and stress might cause me to have a heart attack or stroke. The thought's often occurred to me that my mother might outlive me. But when I bring these thoughts to the Lord He's reassured me: "I will not die but live, and will proclaim what the LORD has done" (Psalm 118:17).

Today I very much want to escape this caregiving burden, but here's my Gethsemane prayer: Thy will be done, Lord.

If it is His will to strengthen me to bear the burden rather than to remove the burden from me, then I will accept His strength.

Scripture: "They were all trying to frighten us, thinking, 'Their hands will get too weak for the work, and it will not be completed.' But I prayed, 'Now strengthen my hands'" (Nehemiah 6:9).

God's Love In, Resentment Out

The battle against resentment toward my mom is ongoing. On the days when resentment suffuses my emotions, I have to choose to move forward through my day acting upon what I know to be true rather responding to the clamor of the enemy's cries.

Truth: I am fulfilling an anointed work in caring for my mother. Truth: God has ordained this time both for my mother's blessing AND for mine. Truth: God is being very gentle with me as He prepares me for my mother's leavetaking. Truth: God is with me always; I have not been abandoned.

The negative thoughts that come into my head remind me of the naysayers who sought to discourage and frighten Nehemiah's work crews as the wall of Jerusalem was being rebuilt. Nehemiah prayed against those who spoke slander against the Israelites, because they had "thrown insults in the faces of the builders" (Nehemiah 4:5).

When I went into my mother's room today "Oh Danny Boy" was playing on the easy listening music channel. Although no lyrics accompanied the orchestral rendition of the tune, a phrase from the song came into my head and tears formed in my eyes in response: "...you must go and I must stay..." This is the basis of my resentment toward Mom; she's leaving me. My mother's slow fading leaves a hole in my heart, and I must fill this emptiness with the Lord's love. Otherwise, I'm easy prey for negative thoughts that would slander my mother's character and tempt me to sin toward her by acting out resentment rather than love.

Scripture: "The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love..." (Zephaniah 3:17).

Stress-o-meters

I remember when I was laboring to give birth to my daughter. A machine had somehow been wired to my body in order to measure the strength of my contractions, and the nurses would ooooh and aaaaah during a particularly intense contraction as the monitor displayed a kind of bar graph in motion with indicators shooting nearly off the display screen.

"You must have an extremely high pain tolerance," one said.

"Are you sure you don't want something for the pain?" queried another as she dabbed my brow with a cool, damp cloth.

My husband clutched my hand and stared into my eyes with an agonized expression that, on this occasion, had nothing to do with his football knee or his arthritic back. His compassion was all for me, and even in the midst of bringing forth a child I was gratified by the empathy.

I've always thought of that wondrous machine to which I was attached during labor as being a "pain-o-meter". Today it has occurred to me that we all ought to wear a portable version of that apparatus in our everyday lives. It could measure stress and exhaustion, assign a numerical value, and display it in graph form. We could all wear our stress-o-meters where everyone could plainly see our tension levels; perhaps as a kind of jumbo necklace with an electronic display.

I envision myself coming home from a full day's work that has followed a sleepless night, only to find that my mother's cat has eaten a plant and has then thrown up in three of the four rooms of her apartment. In my vision I drag myself into our part of the house as my husband walks in the back door, and he sees the reading on my stress-o-meter.

Deeply alarmed for my welfare, he exclaims, "Darling! You must sit down! Let me get you a cool drink! Don't even think about doing another thing tonight! You need sustenance, let me get your supper! I'll call my mother, maybe she'll make your favorite dessert! I'll call our children to come home and minister to your needs!!!!"

Well, I really didn't sleep last night, I had a professional development meeting today; the cat did throw up all over Mom's apartment, our respite care lady is out of town, Son called to say he was bringing his friend-who-is-a-girl home for the weekend, and Daughter needs us to keep our 14-month-old (adorable and full of energy) child on Sunday. Obviously, no one can see my stress-o-meter.

Trouble is, if they could see mine, I'd undoubtedly get a load of theirs. Son carries 17 hours of college courses, maintains a good GPA, recently endured a painful breakup with a girl who was perfect in every way (except for her desire to live and work in Africa), and carries an activities schedule that would drop a cart horse. Daughter chases aforementioned 14-month-old around her home with no break 7 days a week--and the child doesn't sleep very much at all. Thus, neither does Daughter. Husband is coping with a farm, a sewer leak, and two trucks that need repairs.

OK. I know what to do...

...Dear Lord, I am weary. Please strengthen me and help me. I lift my loved ones to You. Enable us to empathize with one another and to bear our loads together, in Jesus' Name I pray, Amen.

Scripture: "Carry each other's burdens, and in this way you will fulfill the law of Christ" Galatians 6:2

Comic Relief

Last evening my husband and I were having one of our periodic disagreements. I can't remember what started it but it ended with my comment that there were sure a lot of dandelions in the yard and his observation that I made mountains out of molehills. Both statements were true.

Things were not yet quite comfortable between us when my beloved spouse opened the phone/satellite dish bill. He came striding into the living room where I was seated on the couch, and waved the bill under my nose. "How do you explain THIS?" he demanded.

There were two separate eleven dollar charges for movies. One was entitled "Jugs of Joy." I've forgotten the title of the other--or have blocked it from my memory. Both movies were from the Playboy channel.

I said, "OK, do you REALLY think that while you are out working on the farm that I'm home watching "Jugs of Joy"??

He sheepishly admitted that no, he really didn't think that. We looked at each other and both of us started to giggle. The tension was broken between us and we began to problem solve, trying to think what might have happened. It is to our son's credit that neither of us suspected him--but at any rate he had been away at college on the date the movies were rented. The mystery had to remain unsolved until this morning. I called the DISH TV people and talked with a very nice young man who immediately removed the charges from our bill, no questions asked. He told me how to check the purchase history on our receivers, which I did. On the receiver in the main part of the house I was relieved to note that there was no record of a movie rental, unsavory or otherwise. I turned toward Mom's door in doubt, not seeing how she might have managed to select those movies and purchase them--but when I checked her receiver there they were. I locked the system, established a password, placed ratings blocks on the selections Mom could see (as I'd already done on the main receiver but hadn't thought to do in Mom's room) and made it out of her room before I began to laugh out loud. I'd known that Mom sometimes used the complicated DISH remote and that she has trouble navigating her way around the 100 channels in our basic package. But purchasing a movie requires several steps and I hadn't thought she would be able to accidentally complete the transaction.

Poor Mom. Maybe she thought "Jugs of Joy" was a Christian station. I just hope and pray she didn't actually begin to watch the movie. The shock wouldn't have been good for her.

Uh Huh

A good part of my purpose in writing about my mother's Alzheimer's disease lies in my determination to help you, my fellow caregivers, to avoid the pitfalls into which I so nobly allow myself to plunge. Sure, I regularly respond to my mother as though she were the mom I once knew, the one who didn't have Alzheimer's. I do this so I can then write about the caregiving blunders I make. That way, I am able to protect many caregivers from making similar mistakes. I do it for you.

OK, not really. Bottom line is I'd like there to be some valid excuse for the way I keep making the same caregiving errors over and over again. My latest gaffe lies in the way I just can't seem to keep from responding in irritation to my mom even when I know she can't help the behavior that I find annoying.

You see, my mother can't remember what's happened five minutes ago, but she's a smart lady and has developed an effective coping mechanism. The strategy that enables her to cover her lack of knowledge about what has transpired in the immediate past is this: no matter what I say to Mom, she acts as though she already knows about it. She has a variety of ways of conveying this, but the most annoying response she makes to any piece of news I bring is a simple "Uh huh." It looks so innocuous in print, but Mom packs a lot into those two little syllables. There's a hint of exaggerated patience, a definite touch of long-suffering, and a superior little lifting of the voice at the end of the last syllable. She'll sometimes elaborate by saying, "You told me that earlier" (even if I haven't), but just on its own, the "uh huh" is enough to set my teeth on edge.

Another symptom of Mom's short term memory loss is that nothing is ever her fault. Because she does not remember that she is the one who spilled the coffee, clogged the sink, or stashed the coffee filters in the wrong drawer, she takes accountability for nothing. I know she often thinks that I am the one who committed these small domestic crimes, and even more humiliating I know that she must believe that I have an unfortunate tendency to blame her for wrongdoings I've committed. After all, since she doesn't remember she's made the error then someone else must have done it, and I'm the person who is most often in her line of vision.

The surface annoyance I feel over all of this masks deeper sorrows; I can no longer share news with my mom and expect the empathy and understanding she would have shown me in the past; and when my mother has committed some small wrong against me, she no longer says that she's sorry. On days when I'm feeling lonely and am missing the way I used to be able to talk with Mom, I am particularly in danger of responding to her in annoyance when she is only trying to cope with her environment in the best way she can. To state it baldly, it is when I am in a self-centered state of mind that I'm most likely prone to be cruel to Mom by punishing her through my display of irritation over the fact that she is unable to nurture me as she once did. This is sinful behavior on my part.

To be a good caregiver I must be able to empathize with my mother's inability to remember. I must do the heart work required to see things from her perspective. In order to manage this I have to find all of my fresh springs in the Lord, and thus relieve my Mom of demands for which she no longer has a supply.

Scripture: Then those who sing as well as those who play the flutes shall say, 'All my springs of joy are in you" (Psalm 87:7 NASB).

A Word for the Spouses of Alzheimer's Caregivers

I have compassion for spouses of those who are taking care of an aging parent. You've most likely reached middle age, children have left the nest, and perhaps you were anticipating an opportunity to spend more time pursuing activities you enjoy. Then, just when your jet ski is set to launch, you receive a call. A parent-in-law needs help, your spouse is out the door to rush to the fallen one’s aid, your household is in turmoil, and meetings are being held to decide how to care for someone who in the past may or may not have cared much for you. An elderly in-law's infirmity may intrude on your home life and your freedom on an escalating scale ranging from inconvenience to hardship.

However, you must give careful thought to the ways in which you choose to respond to this situation, because your responses will lay the foundation for the relationship you will share with your spouse for the rest of your lives. If you are able to exhibit compassion and support for your spouse, and also for the patient who is receiving care, you will find that these positive behaviors will go a long way toward healing any rifts that existed in your marriage before this crisis occurred. A little kindness now, and you will be able to leave the lid off the toothpaste for the rest of your married life with no fear of retribution.

I'd been a farm wife for 30 years when my mother was diagnosed with Alzheimer's disease. My husband’s kindnesses to my mother and support of me as her caregiver have engendered a new level of admiration for him in my heart. I am grateful to him and I'm blessed to see his many acts of kindness toward my mother. Through his treatment of her I feel that I've gotten a window into how he would treat me if I should ever be hospitalized after, say, driving into a tree while attempting to answer a cell phone call. His attitude and behavior toward my mother assure me that he would also be adept at smiling into my eyes and spooning chicken soup into my mouth regardless of the state of my mental capacity. I feel a new level of trust toward him.

The laying aside one’s own desires for the welfare of another person allows the opportunity to follow Christ’s example of humility and service. My heart is with the spouses of caregivers today. You are caregivers too.

Sometimes I Forget

When a person has Alzheimer's, higher level thinking skills are compromised. This fact should be obvious, I suppose; but the difficulty is that Alzheimer's patients like my mother are still able to present a normal facade to the world.

For fifty years of my life, my mother was able to counsel me with understanding and compassion for whatever trial I was enduring. Now, she's unable to do that. You'd think I'd adapt. After all, I'm the one who still is ABLE to adapt.

Yesterday afternoon I was upset because someone had hurt my feelings. As I took Mother for her walk around the driveway I told her all about it as I would have in years past. Mom not only was unsympathetic, she was downright snippy toward me and took the other person's side.

You see, Mom is always annoyed when I make her go for a walk because she doesn't remember that she lives a completely sedentary life. It seems to her that I'm forcing her to do something that she doesn't want to do, something she feels to be unpleasant and unnecessary; and her conclusion is that I'm doing this for some diabolical purpose of my own. She goes along with me because it her policy to be agreeable, but she can't quite be cheerful about it. As I spilled my hurt to Mom I did not think about the fact that she is able to process only one emotion at a time, and that whatever she is feeling colors all of her perceptions.

All of us are affected by mood and emotion, but the dementia patient loses the ability to function cognitively on more than one level at a time; she has no memory of moments in the immediate past upon which she could build a logical perception of her present moment. When my mood causes me to be grouchy with my husband there is a part of me that knows I'm being unreasonable, the part that pushes me to apologize later. Mom has lost that ability to analyze herself; she has only the input from the moment she is in. If she is annoyed then I must have caused it. Case closed.

It isn't that I should stop confiding in my mother; one of the blessings of the long goodbye of Alzheimer's is that I am still able to laugh with Mom, confide in her, talk with her. But as Mom's caregiver, I need to think about how she is perceiving her environment and how she is feeling before I make myself vulnerable through a confession of my hurts or frustrations. As her daughter I must remember her love for me (past and present) and mine for her, and let all of my actions toward her be governed by that love. As a child of God I need to remember that the Lord is my Shepherd and is sufficient to meet all of my needs.

Sometimes I forget.


Scripture: "Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you" (Isaiah 49:15).

Wounds Not My Own

As my children were growing up, I learned that my prayers protected their hearts from hurtful words and actions launched toward them by others. Time and again I've felt amazed that my children could take painful situations in stride. It was as though arrows of hurt bounced off a strong shield of armor around them.

My own heart was a different story, however. I became aware of the need not so much to guard my heart--intercession precludes closing down spiritually--but rather, I learned to quickly take every heart hurt to the Lord. Otherwise, as I labored in prayer and cried out to the Lord on my children's behalf, I was crippled by the pain of those hurtful situations myself.

A similar phenomenon is occurring with my mother. Mom doesn't get many phone calls and has averaged no more than two or three visitors a year since she has lived with us. My children make it a point to stop by her room for five or ten minutes when they can, but this doesn't occur often. And yet, Mom is amazingly content. Although she loves visits and phone calls, she never complains when they are lacking, and will make excuse for those who fail to call or write to her. My heart is the one that withers with pangs of rejection!

I call it "projected rejection." I identify with my Mom and I think about how I would feel if I were in her place.

As a caregiver it is unexpectedly difficult to maintain a separate identity from the person who receives care--especially if that person is a loved one. Caring for Mom and working to understand her thinking patterns has led me to the point that I can very nearly see from her perspective, and sometimes the lines between my own experience and hers become blurred. My mom and I have always been so much alike. Now, that fact terrifies me. I fear becoming old and being forgotten. I suffer in advance the emotional pain of being rejected and feeling unloved--projected rejection indeed! It hasn't happened yet but I'm terrified that it might!

The Lord has not equipped me to handle a life with little interaction with friends because I am not the one who needs that particular armor--I am not my mother! I'm praying today to be able to separate my identity and where I am in my life's journey from that of my mother's, even as I care for her, anticipate her needs, and attempt to understand how she thinks.

It isn't easy! Lord protect me from projected rejection!!!