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“I’m the Boss” – Dad and Alzheimer’s – A Strange Companionship

June 15, 2015 admindeb Leave a comment

After I punched in the security code (to keep residents in rather than us out), the heavy door released its lock allowing entrance to the memory care unit, First thing, I could hear Dad before even seeing him. He was sitting on the sofa, holding the toy he loves most – a dinosaur given to him by his daughter-in-law. [He thinks it’s a kangaroo, and, in fairness, it sort of looks like one]. He was staring off, repeating over and over, “I’m the boss. I’m the boss.”

The staff and other residents around this common room seemed completely unscathed by his declaration. A “stranger” entering the room broke the normalcy of the atmosphere. I’m sure they knew it made me uncomfortable to see my dad “lost” in some other consciousness. He has Alzheimer’s.

I’ve written about Dad’s life with Alzheimer’s before (here). He was admitted into an assisted living facility only four-and-a-half months ago. He continues to do very well, despite life-threatening situations (blocked carotid arteries, metastatic colon cancer, and now Alzheimer’s). He amazes me, really. It is obvious, from visit to visit, that his disease is taking its toll. Yet there’s so much of Dad there still, and we are all so grateful.

A couple of months ago, Dad could still have conversations with us. He needed prodding, but the stories would come – fascinating, detailed stories of his growing up years and ours. I have always loved his stories. And the funniest jokes. Even when they weren’t funny, he enjoyed them so much, it made them funny.

In recent weeks, conversations are becoming shorter, more of a chore. He still has great, comforting memories but the fire of remembering has to be stoked considerably. As far as short-term memory goes, he may not remember what he had for supper an hour ago, but he remembers so many other things. – that Dave loves strawberries, and that he still loves the Atlanta Braves, and exactly how to tease each of his grandchildren. When one of them visited recently and called his dinosaur a cat, he got all “offended”. Dad has fussed about it since, at each mention of grandson Jeremy’s name. He will forget eventually, but for now, it stirs an affectionate pot in his mind.

[None of us could ever beat him in arm-wrestling, and as frail as he is, he hasn’t forgotten how to wear us out and eventually draw down our arms.]

With Alzheimer’s, the world of those affected seems to get smaller and smaller. We used to have long, meandering conversations. I miss the dad of those conversations. We’ve been fortunate in that he is still much like himself, with less words. He loves to eat and loves to laugh. I treasure that laugh of his. He still loves people and having visits from his pastor, friends and family, and his hospice nurses.Especially his grandchildren and great-grandchildren.

Dad has gotten less interested in going out of his assisted living facility. It feels safe to him. Comfortable. Once we’re out though, he is engaged – talking to the other drivers, telling me how to drive, looking for coins on the road (like we’re going to stop and pick them up). Alzheimer’s took away his freedom to drive but it also took away his desire to drive – a strange companionship, this disease and those who contend with it.

One afternoon, we joined other residents in listening to and singing with a church choir in the great room of the facility – outside of the memory care unit. The world feels much larger there. The choir led in some old Gospel songs – “Victory in Jesus”, “Take It to the Lord in Prayer”, “I’ll Fly Away”. At first Dad seemed to really enjoy the singing, and then, he “went away”. Lost in his thoughts and memories. I left him there…somewhere apart, following a scene I could not see.

After the choir finished, we walked back to the memory care unit, and he joined others for supper. Each has his or her own incredible life. Each now with different companions than they might have chosen – both at the table with them, and inside their own thoughts.

In watching Dad through his diminishing memory, and seeing those around him struggle, I’m struck by the dignity of life that we must battle to preserve. This quieter, mind-wandering, lovely old gentleman is still our Dad.

His repetitive “I’m the boss. I’m the boss.” is not surprising. With little education afforded to him as a farmer’s son during the Great Depression, he was rarely anyone’s boss. However, he has lived his life (for all the time I’ve known him) with such a confidence and determination, with autonomy and authority. With so much dignity that not even dementia can steal, hopefully.

Now, with Alzheimer’s, he won’t be easily convinced that he’s NOT the boss.

Maybe, it’s his turn…for a season.

[Big Dogs t-shirt with message (on the back) “I Am the Boss” – Happy Father’s Day present from that same daughter-in-law with a knack for great gifts – as in the dinosaur/kangaroo/cat toy Dad loves]

Repetition and Alzheimer’s

A Different Season of Life – Dad & Alzheimer’s

Alzheimer’s, the Brain, and the Soul

Alzheimer’s Reading Room – to Educate and Empower Alzheimer’s caregivers, their families, and the entire Alzheimer’s Community

Alzheimer’s Speaks Blog – Giving Voice to Those Affected by Alzheimer’s

Memories From My Life Blog – Memory Posters

The Best Alzheimer’s Blogs of the Year (2015)

12 Behaviors that Trouble Alzheimer’s Caregivers

Alzheimer’s: 25 Signs Never to Ignore

Babies & Children, Bookmarked Summer, Books, Children's Books, Cross-Cultural, Family, Friendship, Grace, Home, Love, Neighbors, Relationships, Remembering, Stories, Transitions, Words, Writing

Bookmarked Summer: Sandra Cisneros’ The House on Mango Street

May 21, 2015 admindeb 2 Comments

I love words. Not cruel, lying, arrogant, or mean-spirited ones, of course. I love the kind of words that make stories come alive, where you can see and touch and smell right off the page of the book. Oh to write that way… maybe one day.

A dear friend, who reads my writing because she loves me, shared this book with me. The House on Mango Street by Sandra Cisneros. I finally read it…just a few hours long, packed with that pink-orange hue of Mexico. Mexico transplanted in Chicago. Cisneros writes so personally of growing up straddling two cultures – living in Chicago sometimes, and Mexico other times. The book is a small novel, large with details of a family living Mexican in an American city. Sandra Cisneros opens the door to the reader to step into her Mexican American childhood, tucked in a neighborhood, so like Mexico and yet still far from home.

I read some of the reviews by readers of Cisneros’ book. They are extreme in their take on this little book – ranging from those who love her writing, identifying with her stories, and those who hate that they had to read the novel (for a class, etc.), not seeing Cisneros’ writing as worthy of their time. The criticisms surprised me, and then I understood that her writing is full of strong emotion and bore fruit of that in her readers, one way or another.

I loved the way she invited the reader, one outside of this neighborhood and culture, to be a part of its story. It was impossible to tell what was fiction and what was truly her own childhood.

Below you will find some of my favorite quotes from The House on Mango Street. I hope you enjoy her words, as I did.

“My mother’s hair…is the warm smell of bread before you bake it, is the smell when she makes room for you on her side of the bed still warm with her skin, and you sleep near her, the rain outside falling and Papa snoring.”

“Those who don’t know any better come into our neighborhood scared. They think we’re dangerous. They think we will attack them with shiny knives. They are stupid people who are lost and got here by mistake. But we aren’t afraid…All brown all around, we are safe. But watch us drive into a neighborhood of another color and our knees go shakity-shake and our car windows get rolled up tight and our eyes look straight. Yeah. That is how it goes and goes.”

“Hips…one day you wake up and they are there. Ready and waiting like a new Buick with the keys in the ignition. Ready to take you where? They’re good for holding a baby when you’re cooking…you need them to dance…if you don’t get them you may turn into a man…they bloom like roses.”

“My Papa, his thick hands and thick shoes…wakes up tired in the dark,..combs his hair with water, drinks his coffee, and is gone before we wake.”

“Everything is holding its breath inside me. Everything is waiting to explode like Christmas. I want to be all new and shiny…a boy around my neck and the wind under my skirt.”

“There were sunflowers big as flowers on Mars and thick cockscombs bleeding the deep red fringe of theater curtains. There were dizzy bees and bow-tied fruit flies turning somersaults and humming in the air. Sweet sweet peach trees…big green apples hard as knees. And everywhere the sleepy smell of rotting wood, damp earth and dusty hollyhocks thick and perfumy like the blue-blond hair of the dead.”

“A house of my own…only a house quiet as snow, a space for myself to go, clean as paper before the poem.”

“I never know what I am feeling till I write about it. Writing makes me feel better when life overwhelms me.” – Sandra Cisneros*

*Sandra Cisneros’ Letter to the Sixth-Grade Students of Ms. Jill Faison, Hogan Middle School, Vallejo, California

The House on Mango Street – 25th Anniversary Edition

Photo Credit – Picture of Sandra Cisneros – by ksm36 – Wikipedia.org

All Good Gifts, Babies & Children, Family, Food & Drink, God, Grace, Home, Inspired, Lessons Learned, Life Skills, Lifelong Learning, Parenting, Stories, Word of God

The F** Word, Fat-phobia, and an Obesity Task Force – 3 Small Stories

March 24, 2015 admindeb Leave a comment

For You formed my inward parts; You wove me in my mother’s womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. My frame was not hidden from You… – Psalm 139:13-15

Flee immorality. Every other sin that a man commits is outside the body, but the immoral man sins against his own body. Or do you not know that your body is a temple of the Holy Spirit who is in you, whom you have from God, and that you are not your own? For you have been bought with a price: therefore glorify God in your body. – 1 Corinthians 6:18-20

The F** Word – After church one Sunday years ago, while living in Morocco, we gathered for lunch with other American friends. It’s funny how we talk about eating while we eat. I don’t remember the subject of that conversation, but we all remember a particular humorous miscommunication. For some reason forgotten now, I said, “We don’t allow the F** word to be said in our home.” Another parent of teenagers said rapid-fire, “Well, I should hope not!” – thinking I was referring to the four-letter F-word. Then one of our teens said, “She means the word ‘fat'”.

I have struggled with my weight all my life. Part of it probably goes back to our Scottish heritage – not all of whom are stocky, I’m sure, but definitely our family was, for generations back. Part of it also is a propensity for filling whatever sense of emptiness (or lacking) I had at the moment with food. That being said, I don’t mind the culture of celebrating with food, either. There’s just no getting away from food, really, and who wants to? Using food properly is a challenge, and one I have taken on, with varying degrees of success (keep reading).

Fat-Phobia – Having had issues with food and experiencing “fat-shaming” from an early age, I did not want that for my children. However, I did NOT want them to be fat-phobic either. I did not want them to define themselves or others as desirable or not, just based on size or body type. We didn’t use that language.

However, knowing my own struggle with food, I didn’t want to pass that struggle to them, as much as was possible. When they were young children, we could help with their food choices and portions. As they moved through puberty with all its body change freak-outs, we operated from the God-inspired premise that they were “fearfully and wonderfully made”. Can’t say how successful we were, but we tried. Now young adults, their choices are their own. I never know what to cook for them, because there is that fear of “fat” lurking about, even though they are all gorgeous healthy young people. [Photo insert would usually happen here, but better not.]

Obesity Task Force – Years before marriage and children, during a time of major career investment, I was invited to be part of an obesity task force. We were all affiliated with Grady Memorial Hospital in Atlanta, Georgia – a huge inner city medical center. The task force consisted of internal medicine docs, endocrinology researchers, nurses, and dieticians. We met regularly for several weeks, after work for dinner, to tackle the problem of obesity in our urban poor patient population. We all gained weight. One of our members was Italian, in the US for an endocrinology fellowship. He made the most amazing fettuccine carbonara I have ever tasted (recipe below).

Back to the subject: what we discovered on that task force is that obesity is not easily defined, nor its causative agents as easily identified as we all previously thought. Finally, we also realized how inadequate and unrealistic our interventions had been and we weren’t sure what we could do better. It’s too easy to judge the obese person who has dangerously high blood pressure and continues to eat in ways that will shorten his/her life. However, it is much harder to help someone change habits, their history of coping, and social culture related to food. Much harder.

What are the morals to these stories?

1) Fat shouldn’t be a bad word. Eating disorders and disorderly eating are part of our Western culture (for sure, if not globally). We do not help by harming – whether it’s another person or ourselves. Poor nutrition, leading to morbid obesity or thinness, is definitely a struggle for us as a culture. However, the trend in the US of being so food-conscious and food-controlling is surely not healthy. Or as socially conscious as we think. Something to think about. For each of us…not just for health’s sake, but for the sake of our community and world. The world can’t afford to eat the way we do – either to excess or for health. How can we simplify our diet and still enjoy the great good that food brings?

2) Food is meant to be shared. That brief season on the task force was so fascinating; we learned as much from eating together as talking together. Our family table, with the children growing up, sharing food with each other and lots of company, was a time I will always cherish. Today, in these times, sharing food is a bit more challenging, with busy schedules, and food-related issues (allergies and preferences), but I am determined to stay in the game. I think we actually eat less when we eat together. The company fills those empty places as much as the food does.

3) Face the reality of obesity without shaming or judging – yourself or others. For those of us who struggle with our weight, I am learning that it is possible to have some victory in that area, without dieting (notice that word has “die” in it). That doesn’t mean that I am thin (“the tyranny of thinness” is a subject for another time). My blood pressure is good, and I am not on any medications right now, but being thin is not the goal. Living healthy is the goal. The wee bit my husband and I try to do to live healthy is this: work hard, do some regular exercise, rest/sleep enough, try to limit salt and “white” carbs (sugar and white flour/rice/pasta/potatoes), avoid nighttime eating, battle a sedentary lifestyle (that comes with all the “screens” in our lives), nurture your sense of humor, practice gratefulness and forgiveness, find ways to serve people, spend time in community, and spend time with God.

I’ll close with what Jesus said about food:

Jesus said to them, “My food is to do the will of Him who sent Me and to accomplish His work.” – John 4:34

From other passages in Scripture, Jesus enjoyed eating with others, but He lived also with that greater purpose. I want to be like Him.

Italian Grandmother’s Recipe for Fettuccine Carbonara

Chipsy – Egypt’s snack-food giant – A Time to Munch – interesting article about a food industry in Egypt that has over the last 30 years affected a culture – “the Chipsy Generation”

Photo Credits: www.incourage.me and www.aholyexperience.com and image of Grady Memorial Hospital

Bookmarked Summer, Books, Church, Culture & Religion, Easter and Lent, God, Gospel, Holidays, Inspired, Jesus, Pray, Stories, Transformational, Wednesday Worship

Worship Wednesday – Ash Wednesday – Lenten Practices

February 18, 2015 admindeb 1 Comment

Blog - Lent - Ash Wednesday - from article by Jim Denison Photo Credit – Ash Wednesday – Jennifer Balaska via en.wikipedia.org

“An evil spirit of this kind is only driven out by prayer and fasting.” – Matthew 17:21

It wasn’t until I was six years old that church became any sort of meaningful in my life. My mom worked all the time in those days, and finally, after a last-resort divorce, she settled us into a better life of meager means and lavish love. It was then that we responded to an invitation of neighbors, and a weary single mom and four eager children met the welcome care of a loving church. Our experience was small town Bible-Belt Baptist, and that set the foundation for my understanding of God. In fact, when I signed up for a World Religions course as a college freshman, I thought it would only be about Christianity.

My first experience with Lent was seeing my best friend on a Wednesday long ago, after she had disappeared from our usual routine. We met for lunch and she had this mysterious, ashen cross smudged on her forehead. I resisted the urge of just lovingly wiping it off for her, thinking she was unaware of it. Pointing it out instead, she taught me my first lessons on Lent – on repentance, fasting (sacrifice), the Cross and the Resurrection of Christ. All of that was gloriously real for me already, except for setting aside 40 days of resolve prior to the celebration of Easter.

For years, I still didn’t take Lent very seriously and still don’t know quite how to incorporate it into my life…except that my thinking is changing. In this world gone mad, I am more convinced than ever that we as the Church need to stand together for the sake of the nations and for the glory of God. If in Lent, I can find elements that help me see God and my own need for Him more clearly, then I want to integrate Lenten practice into my life.

Corporate month-long fasting has never been a draw for me, as I was always completely sure it would be a fail for me. While we lived in North Africa, and especially in Egypt, fasting was very much a part of my Muslim and Christian neighbors’ lives. Even those Christians who were evangelical (from Coptic backgrounds) saw the importance of fasting. Their awareness of the evil of sin in the world and the need for drastic measures lined up solidly with Jesus’ own life and teaching on this.

For the past several years, during Lent, I read Adrian Plass’ book The Unlocking – God’s Escape Plan for Frightened People. It was also a gift from a good friend. There’s a lot in this world that’s frightening these days. Yet God is still God and is at work in the midst of so much crazy. I believe Him at His word. Full stop. We have a role in dealing with what we see in the world. As Jesus told His disciples (Matthew 17:21), there is evil that we can only battle, from our side, with prayer and fasting. This is a strength in a true observance of Lent.

As we grieve so much death around us in these days, and as we look to Easter, I would like to close with a prayer from Adrian Plass’ book:

“Loving heavenly Father, I want to try to tackle this business of loving enemies. First of all I’m going to sit quietly here and go through a mental list of the folk who I would call my enemies. Help me to be really honest…I don’t want to leave anyone out….I’ve done it, Lord. There are rather a lot, and some of them I really hate. But You made it quite clear that You can’t forgive me if I don’t forgive them, so I’ll start the process, even if it takes a long time to mean it. Love them for me, Lord, and please accept my prayers for their welfare and safety. Soften my hard heart as the days go by, until I begin to see them through Your eyes. Thank You for forgiving me. Amen.”

For these forty-plus days before Easter, I will be reading Transformed; referring back to the book-marked portions of The Unlocking; reflecting on God and the goodness and wisdom He displays through Jesus’ life and teaching; resisting (fasting from) those money- and time-stealers that distract me from larger issues; repenting of the sins of neglect and indifference; and remembering to pray and reach out to God and those around me as His vessel for His purposes among the nations.

Why is Lent Relevant for Evangelicals? by Jim Denison

Evangelicals Embracing (and Rejecting) Lent by Trevin Wax

Lenten Observances – Eastern & Western Traditions

The Coptic Church and Worship

A Catholic Homily for this Ash Wednesday in memory of the Coptic Christians killed last week [Beautiful blog – I do not believe in praying to anyone except God; still I appreciate the call to all of us to remember others caught in the cross-fire of evil in this world. Praying for their families and for those who are unfortunately enemies of the church.]