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).