Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.

Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Sunday, December 30, 2012

The Joy We Experience Gives Us Strength to Endure Sadness

Excerpt from Chapter Fourteen of Alzheimer's Daughter
With wind chills well below freezing, I picked my sister up at the airport late on the evening of December 21, 2008. We'd both just finished our last day of teaching before Christmas break, and Annette had flown immediately to Ohio. While driving to my house, we discussed how we should tell our parents about their move tomorrow to The Lodge, a locked dementia unit. Annette and I knew no other course of action existed. I'd been told Ed and Ibby were too confused to remain at their assisted living facility at Lakeview Reserve. This move would be different than any other. There would be no opportunity for our parents to give input, argue or disagree. Our primary goal was to relocate them lovingly, calmly, efficiently, and without upset. We decided we’d play it by ear the next morning.
I felt sick and threw up during the night. Ann tossed and turned. The wind howled, blizzard-like. The freezing torrent outside matched our internal turmoil. We woke bleary-eyed, but resolute––knowing we had no choice but to do what we dreaded.
By morning the wind had died down slightly and was replaced by a heavy freezing rain. During our drive to Lakeview Reserve, we lamented the regression in Ed and Ibby since we moved them out of their home two years earlier. At that time they had the cognitive ability of about fifth graders. They had basic, but rapidly dwindling understanding of dates, time, and money.  The four of us had been able to discuss the move from their home, and although unhappy about the situation, Mom and Dad had some ability to understand how their lives were changing.
Six months ago, at the time we moved them from independent living to assisted living, they had about as much understanding of life as my third grade students. They didn’t have full cognizance of time, dates, or money, but they could speak and still had limited control of their emotional reactions.
But now, six short months later, the disease had reverted them to the mentality of about a first grader. Annette and I were making this decision and completing this move for them, just as a parent would make choices for the welfare of a six or seven year old child. These eighty-eight year old first graders would not be able to control their emotional reaction. We just hoped and prayed they could retain some of the happiness which had sustained them all of their lives, even as they approached life in a locked Alzheimer’s unit.

As Annette and I arrived at Lakeview Reserve around 9:00 a.m. on the morning of December 22nd, we got out of my car and gulped some deep winter breaths. Our hearts drummed as the elevator took us to their apartment on the second floor. We tapped on the door. Mom answered and welcomed us in. It seemed odd that Mom and Dad were not surprised to see my sister from Florida. I think they were already losing the awareness of her geographic distance. Maybe in their confused minds, my sister and I blended together and they couldn’t distinguish one of us from the other.  We faked happy conversation, discussing the weather and the Christmas season, for about 30 minutes.
Then Annette and I made eye contact, stood, and rummaged through Mom and Dad’s closet for their winter coats. We brought the coats to the couch where they were sitting, asked them to stand, and started bundling them––saying only that we were taking them to live somewhere where they’d receive more care. They did not speak, but looked at us with puzzled questions on their faces, with the innocence of children––lambs led to slaughter––no mention of non-compliance.
On that bitter cold, sloppy morning, with wind chills hovering around freezing, Mom and Dad huddled in their winter coats, as we loaded them along with their walkers into my Jeep and drove them across town.
The staff greeted them as we walked into The Lodge. Their new room was warm and cozy, despite the ugly weather outside. We took their coats off and settled Dad into a plaid chair and Mom into a flowered chair, visiting with them for about 20 minutes. Mom commented, “This place reminds me of the farm.” I think the small delicate print on the wallpaper must have conjured up thoughts from her youth.
Aides came to walk them to lunch and gave Ann and me a signal to leave, nodding, indicating, “Don’t worry, everything will be all right.” We excused ourselves, assuring Mom and Dad we’d return with their things soon, knowing we had much work to do back at Lakeview Reserve.
Aides released us through the locked doors and Annette and I held hands, leaning on each other, choking back tears as we escaped to freedom through the front doors, scurrying to my Jeep.

We returned to Lakeview Reserve and began the whirlwind of completely dismantling Mom and Dad’s two bedroom apartment in two days. Annette and I divided and conquered, she on one end of the apartment, I on the other. We pitched, sorted, and bagged anything salvageable. Annette had contacted Salvation Army about a week earlier and they’d agreed to bring a truck on Christmas Eve day––in only two days.

A couple of times each day we’d rush back to The Lodge to check on Mom and Dad, taking small amounts of favorite, comfortable clothes, a few pairs of shoes, and basic necessities to their new room at The Lodge. Now, at the end of our parents’ lives, their existence was reduced to a couple of armloads of clothes and toiletries.            
We’d ask the staff how they were acclimating. Each time we arrived, for two straight days, we found them sitting bundled in their winter coats. We had to keep asking them to take their coats off. Aides told us Mom and Dad continued to put their coats back on saying, “We don’t live here. We’re leaving soon.” 

As we worked back at Lakeview Reserve, we found some sacred treasures. One unbelievable find was a beautifully handwritten note Mom had composed ten years earlier for her four grandchildren, intending it to be given to them when they became adults. My hands shook and I gasped as I silently read:
January 20, 1998
Dear Grandchildren,
I felt it necessary to write a letter of appreciation to you for your wonderful gifts at Christmas. Best, first, and most important is your gift of love. It was great that we could all go to candlelight communion on Christmas Eve. It meant so much to Grandpa and me.
            There are no more wonderful children and grandchildren than we have. You have grown up to be special in every way.
            It’s as though one day God sat beside his gigantic computer and said I will choose four babies who will grow up to be fine young people. I will send a boy and a girl to both of your daughters and their husbands. They will be taught to honor My name and they will respect all human life. They will know that the person they choose for their life’s partner will help raise their children, and they will choose wisely. Marriage is a sacred commitment.
Always seek to do good, and you will be richly rewarded just by knowing in your own soul that you did what was right.
Our hope and prayer for each of you is that you will be as happy as Grandpa and me.
Much Love and Many Prayers Always,
Grandma and Grandpa
            After I read the last words, I called Annette from the kitchen saying, “You’re not going to believe what I’ve found.” She read the note, equally amazed at its beauty. We couldn’t help but contrast Mom’s coherence just a few years ago, to how lost she was now. We felt touched by this reminder of who Mom really was––rather than the lost soul she’d become.

Annette and I were physically and emotionally spent as we left Lakeview Reserve on Christmas Eve. Annette’s family was flying in that night and our nearby relatives were coming on Christmas Day for dinner.
 Annette and I stopped at the grocery late on Christmas Eve, intending to buy a special ham for the next day. As we approached the meat section––the hams were sold out! We were spent, dirty, and exhausted––and now we were beaten by a ham. Standing at the meat case, shaking our heads, working on overload, we could have cried or laughed. Had I been alone, I would have cried––but Annette and I looked at each other and burst out laughing. Oh well, we bought something else––I don’t even remember what––and still had plenty of food.
It was a Christmas when being together was much more important than an elaborate dinner. Our family gathered together around Mom’s table for dinner, as Ann and I teetered on the edge of emotion because of the painful realization that Mom and Dad were locked away.

Sadness had snowballed over the past weeks, but consecutively, I was preparing for joy. Our son’s wedding was to take place on New Years Eve. The girl I’d first met on the weekend of our daughter’s wedding, two and a half years before, was to become my daughter-in-law. My son had proposed one year before on New Year’s Eve of 2007. The couple had been planning all year for a wedding on New Years Eve 2008, in less than one week.
The reality that Mom and Dad were in no shape to attend felt bittersweet. Our son was the youngest grandchild­­––the last to be married. Mom and Dad had attended the other weddings of their grandchildren, but with the location being three hours away, and their move just days ago, there was no way Ed and Ibby could be present.
I left my sadness and my parents locked behind the metal security doors of the dementia unit as our family traveled to the wedding. The events of that day rejuvenated my sapped spirit. My hands trembled as I tied the ivory sash on my daughter-in-law’s wedding dress, knowing that she and my son had an enduring, deep love, which could last well past six decades, like Ed and Ibby’s. After the wedding ceremony, we brought in the New Year by celebrating new love and a new marriage.
A picture of my son wearing goofy 2009 eye-glasses, and his wife wearing a ‘Happy New Year’ crown, tooting a noise maker, with the crowd circling around tossing confetti and streamers, made me realize––life goes on. Generations birth generations. The old raise the young. The young are packed with not only the chromosomes, but the spirits of those who came before. It gave me peace to know that my parents were in attendance through all of us.

Since Mom and Dad couldn’t attend the wedding, the bride and groom devised a plan to bring part of the wedding to them. Our pastor agreed to have our son and his wife repeat their vows in our home church. So, two days after their wedding, the newlyweds dressed again as bride and groom and drove three hours north, to say their vows in our home church with Mom and Dad present. The sanctuary was sunlit on what could have been a very gloomy January 3, 2009. Only thirteen of us were in attendance. 
In addition to the new couple’s wedding vows, our pastor crafted a service celebrating marriage and family by acknowledging Ed and Ibby’s sixty-fifth wedding anniversary––which would be in just two weeks––and gave a blessing to new life, through the upcoming birth of my niece and her husband’s first child due in April (my parents’ second great-grandchild).
This service provided an emotional outlet for feelings we’d all squelched. Liquid emotion ran down every cheek. We sobbed––the groom included. Throughout the service Mom and Dad seemed happy and content. I’m not sure how much of the service they understood. I’m not sure they knew their grandchildren, but they did understand their own marriage was being celebrated. I believe they felt our gratitude for the faith they’d given our family. Many pictures were taken, but the most important was of the bride and groom with their grandparents.
 Thoughts about the ways families grow and change with intense happiness and deep sadness floated through all our minds. On that day, we pondered birth, life, and the end of life.
We shed many tears during that holiday season––tears of sadness, pain, loss, and joy. A dear friend reminded me, we don’t have the ability to schedule our times of deep sadness separately from our times of great joy, nor should we. These powerful moments weave together to form the people we become. We can’t separate these positive and negative events into distinct timeframes––we must fully embrace each emotion. It may be the joy we allow ourselves to experience that gives us the strength to endure the sadness.

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