Soli Deo Gloria

If all goes as promised, my book God, Mom, Alzheimer's, and Me will be published sometime next summer by Bridge-Logos. It is a book of devotions and practical advice for those who care for loved ones with dementia.

The book began when an editor saw this blog and encouraged me to write a book. Her Catholic publishing company did not accept the finished manuscript, dismissing it as being "too Protestant!" This did not upset me unduly--because you see, I am indeed Protestant! I listed the manuscript with an online Christian manuscript service, and Harvest House publishers expressed interest. But Bridge-Logos responded almost immediately with an offer of a contract, and so I signed. The editing process was painstaking and the publishing date has been postponed from fall 2008 to summer 2009; but until today I had confidence that the book would indeed be published.

However, the economic crisis has had far reaching effects. My editor wrote to me today and asked me to partner with Bridge-Logos by purchasing 500 copies of my book.

F i v e H u n d r e d copies. The UPS man will not be happy. And where will I put five hundred books? It is sure to be a little book, and just a paperback; but still. I was picturing them stacked to the ceiling in the garage until I remembered--we don't have a garage, only a carport!

What am I going to do???

I'm going to trust the Lord, that's what.

While I wrote God, Mom, Alzheimer's and Me a small printed sign hung above my word processor. It read, "Soli Deo Gloria." This is Latin for "to God alone be the Glory." I repeated this phrase as a daily prayer as I wrote of the struggles of caregiving and of God's faithfulness to my mother and me.

I wrote this book for Jesus, and it is true that my prayer is for it to help others who must fight the battles of resentment, grief, and weariness that caregiving brings. But even if no one ever reads my book, I've given the Lord a gift in its writing and that is blessing enough. To be able to give to Him! Yes!!

To God alone be the glory!
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Oh. By the way. If you'd like to reserve an advance copy of a great little devotional entitled God, Mom, Alzheimer's, and Me, I'm pretty sure I'll be able to find one for you. Sometime next summer. Probably.

Scripture: "...I said, 'I have labored to no purpose; I have spent my strength in vain and for nothing. yet what is due me is in the Lord’s hand, and my reward is with him'" (Isaiah 49:4).

Kindness

If you are an Alzheimer's caregiver, I urge you to frequent the Alzheimer's Association's web site at www.alz.org. When Mom was first diagnosed I was able to use this site to locate a chapter of the Alzheimer's Association within 20 miles of my home. The information at the web site along with the meetings I attended provided me invaluable information as I began life as a caregiver.

One day I was scanning the articles at alz.org and found an offer of a free resource. I filled out the online form and a few weeks later received football coach Frank Broyles' Playbook for Alzheimer's Caregivers. The book came with a pocket sized flipbook entitled Pocket Book of Tips and Strategies.

Tonight I have been reviewing Coach Broyles' strategies and am convicted by one characteristic that shines through his words of advice--kindness. His love and respect for his wife expresses itself in a desire to protect her emotionally. "Pay attention to what she is trying to tell you," he says. "Give her lots of time to finish what she is trying to say...Don't argue with her...Tell her each car's seat belt is different if she is having trouble putting it on."

Tears of remorse come to my eyes as I quote these words, because when I contrast my own behaviors with the recommended strategies I fall so short. My mother always has difficulty fastening her seatbelt and I have let her struggle with it as I hurry to begin our trip. My disgusted silence is worse than unloving, it is cruel. Mom needs me to be her advocate and her helper. She needs my prayers and my support. So long as I nurture remnants of resentment over our role reversal, how can I be Christlike in my behavior toward her?

Well, I was a spoiled only child of a doting mother as opposed to being a strong and capable "take charge" kind of person like Coach Broyles, but I know that this whining complaint won't excuse my sins of disrespect toward Mom. "What can wash away my sin...nothing but the blood of Jesus."

Today, I took my mom to the beauty shop and as usual, she struggled to fasten her seatbelt. I looked over and said, "You know Mom, every car has a different kind of seatbelt and it can be a real puzzle to figure them all out." Thanks to the Lord and to Coach Broyles, maybe there's hope for me yet!

Scripture: "And the Lord's servant must not quarrel; instead, he must be kind...able to teach, not resentful" (2 Timothy 2:24).

Coach Broyle's playbook is available online at http://www.alzheimersplaybook.com/

Today is a Gift

Mom was diagnosed with Alzheimer's disease nearly five years ago, and is now functioning at a higher level cognitively than she was at the time of her diagnosis. At that time, my research led me to the expectation that she would exhibit a slow but steady decline, and this has not yet happened.

Elsewhere in these entries I've described in detail the medications and the environmental factors that I believe have helped Mom to hold her own and even to improve. To review briefly, Mom takes the Alzheimer's drugs Aricept and Namenda along with an antidepressant. She receives a cholesterol lowering medication that I think may have helped her cognitively as well, and I give her several supplements including fish oil, a daily multivitamin, calcium, and lutein. She lives in a room with southern exposure, receives daily exercise, and is provided music and books. Most importantly, she has enjoyed a lifetime walk with the Lord and her faith has not wavered.

Tonight while I was in prayer, the thought came to me that the time my mother has lived with us has been more for me than it has been for her. The Lord has provided Mom the comfort that comes from resting in Him during this time, and when she dies she will rest in Him still. He has allowed her this time of peace while my heart is being strengthened to bear her loss, but I haven't always understood or accepted that this long goodbye is a gift. Today I am praying to be more appreciative of this gift of time with my mom.

To Respond With Love

When I began taking care of Mom I congratulated myself on my ability to hold my tongue when she snipped at me. I felt quite noble when her occasional snide comments fell into a pool of my determined silence. However, the Lord made it clear to me that if I am to follow His example, some action must be taken. A reply that expresses understanding of Mom's frustration or my arms going around her for a hug are examples of loving responses.

My mother, regardless of the state of her ability to remember, reads my moods quite accurately. She is well aware that my silences are not loving. Today my prayer is for the ability to respond in love toward Mom even when she is grouchy with me.

Even in My Loneliness

Because those of you who are caregivers might look to this site for inspiration and help, I feel a responsibility to be honest and not to paint myself as a paragon of caregiving virtue. It is an ongoing struggle to provide for my mother's emotional needs, and I confess that I haven't been doing a very good job.

Caregiving is a lonely enterprise. No matter how well supported one is (and I have excellent support from my husband and daughter), the primary caregiver tends to bear the lion's share of the emotional burdens of caregiving. This is probably because the main caregiver is often the one who is most closely related to the dementia patient. In an effort to protect the heart, there is a tendency to distance oneself emotionally. And, once we begin to build walls around our hearts, it isn't possible to raise them and lower them at will. I've ended up feeling isolated from friends and family alike. Even when I'm in good company I feel that strange sense of distance. Just when I long the most for comforting arms and kind words, I don't seem to be able to receive them. It's as though they bounce off the bubble of protection I've attempted to wrap around myself.

The loneliness of taking care of someone you love comes from the fact grief itself is a lonely emotion. How do people do it without the Lord? I know that though I may feel alone, that God is with me.

Following this entry I've placed a link to a popular praise and worship song that's taken from the 23rd Psalm. What a blessing it is to know that I'm not ever truly alone even as I walk through the valley of my mother's death.

Matt Redman's "Oh, No, You Never Let Go"

Miscommunication

A good portion of the conflicts that occur between my mother and I have their roots in our different perspectives and lack of adequate communication. For example, the other night I offered to hold Mother's fruit cup while she swallowed some pills. She thought I was telling her to give up the fruit cup for good and, not being ready to bid it adieu, she took exception. A misunderstanding ensued as we both got snippy with one another.

I was reading Melody's blog this afternoon, and as she related the story of her frightening brush with wildlife in an unexpected location, I was reminded of another miscommunciation that took place between my mother and myself over thirty years ago.

I was 16 years old and myopic. My face was positioned one inch from the bathroom mirror as I applied black eyeliner and several layers of mascara (it was the 70's). I turned to reach for my contact lenses and saw a movement on the floor. "A tissue fluttering in the air from the floor vent," I thought. I bent down close to examine the object. It was a palm sized wolf spider who, threatened by twin black lashed eyes that must have resembled intruders in its territory, leapt toward my face. I screamed, "SPIDER!!!!!!!!"

My mother, asleep in the next room, thought I'd said, "FIRE!!!" and came tearing out of her bedroom screaming, "WHERE'S the FIRE??????" This misunderstanding continued at top volume for quite a long time and ended with both of us feeling that the other did not have proper compassion for our respective traumas.

This was probably an accurate evaluation, because truth be told, I'm still miffed with Mama for her lack of empathy that day. And, she still speaks ruefully of the time I caused her to believe that her three bedroom ranch was going up in flames.

Grief Analyzed, Grief Released

Last night I watched with the rest of the world as Michael Phelps swam in the 100 meter butterfly for his seventh Olympic gold medal. Phelps wisely chose to take one last frantic, chopping stroke at the end of the race while his opponent, who was leading the race until the last hundredth of a second, glided smoothly into the boards. As the results appeared showing that Phelps had won, the camera panned to his mother's face. With one wide-eyed look of amazement that lady slid right down to the floor, overwhelmed with emotion over her son's victory.

As Phelps' mother reappeared, wiping away tears of joy, I experienced a flash of grief over my own loss of this kind of regard. There is no one left on this planet who is my cheerleader in exactly the same way a mother can be. Of course I've never won an Olympic medal, but as she shared in my small victories I've seen the same joy on my mother's face as Michael Phelps' mother displayed. As children of parents with Alzheimer's disease, we find to our dismay and grief that we are no longer the recipients of that irreplaceable focus of parental attention. There is no longer any human being who cares more about our achievements or heartaches than they care for their own.

If we live long enough we inevitably accumulate a body of grief and suffering. Grief over loss of parents is compounded when it comes as a final, devastating layer to earlier heart blows of loss. Middle-aged caregivers of aging parents are particularly vulnerable, often dealing simultaneously with other difficult life passages such as raising teenagers, giving children in marriage, and becoming grandparents.

Apart from the Lord, sorrows of great magnitude can be survived only through avoidance tactics that provide in-the-moment relief but no lasting solace. Analysis may reveal with fair accuracy the nature of the problem, but can offer no prescription that will provide true relief.

The other night I dreamed that I was a baby alone in a car, pushing buttons on the radio. In my dream state I was able to turn the radio off and on, but I couldn't switch stations, and I kept fruitlessly attempting to do so. As I woke up I smiled as the meaning of the dream became apparent to me. When I spend too much time analyzing my own grief (as in the preceding paragraphs), I'm like a baby playing with controls she cannot understand, pushing random buttons. I don’t know which buttons to push and lack the ability to develop some kind of a logical, systematic technique for trying all combinations of button pushing. My efforts become random, my resolve to formulate some sort of a self-help program crumbles. And yes, I need to be content with the ability to, as the old gospel song says, turn the radio on.

I need to open lines of communication between myself and the Lord with a willingness to release my broken heart to Him, and to quit pushing all those other buttons. I'll never find comfort through self-examination. The more completely I understand the exact composition of my own sorrows, the more discouraged I become.

Scripture: "It was not by their sword that they won the land, nor did their arm bring them victory; it was your right hand, your arm, and the light of your face, for you loved them" (Psalm 44:3).