ALS Ice Bucket Challenge Deferral

On August 14, 2015, just two weeks ago, my father-in-law, Frank, passed away in Germany. He died from amyotrophic lateral sclerosis (ALS). This blog post is his story, written to continue raising ALS awareness.

Frank - July 2014

Frank – July 2014

By now, thanks to the ALS Ice Bucket challenge that took the world by storm last August, many people all across the globe are aware of what this deadly disease does to a person that receives the diagnosis.

According to the ALS Assocation, “ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become paralyzed.”

Frank received the diagnosis two years ago, during the summer of 2013, though the symptoms began in his left foot during the fall of 2012 and doctors suspected it might be ALS. For almost a year, doctors did tests and monitored his muscle-loss as it moved into his leg. During that time, he was mostly only hampered by a limp and frustration.

After he received the diagnosis, symptoms worsened, but he was able to maintain a reasonable quality of life for the next year and a half. This year, the awfulness that is ALS reared its ugly head at a more rapid pace as his muscle-loss continued to accelerate in multiple parts of his body. In addition, what started out as mild coughing began to impact his breathing.

With Frank’s mobility continually compromised, he and my mother-in-law, Isolde, renovated their downstairs bathroom to make it handicap accessible. Next, they relocated their bedroom downstairs. By spring, he could no longer maneuver up and down stairs and he was eventually restricted to a wheelchair. He had a feeding tube inserted into his abdomen. His breathing grew worse, and it became increasingly difficult for him to cough and clear the congestion in his lungs. Soon his neck muscles began to fail him and his head cocked to one side. Eating and breathing became a constant chore. His speech slurred.

Yet throughout all these ordeals, his mind remained sharp, perhaps the most evil characteristic of ALS. As I researched more about ALS, someone likened it to being “trapped in your own body.”

This past June, I flew from the United States to Germany with my two children – Lance, age four-and-a-half, and Vivian, age two-and-a-half, to spend time with their Oma and Opa for an extended period. We spent four “beautiful”, as Frank put it, weeks together. Due to his work, my husband, Jan, arrived 12 days after we flew over and spent 18 “beautiful” days with his father.

Jan and Frank

Jan and Frank

When my brother-in-law drove the kids and I to the house from the airport in Berlin, tears welled up in my eyes at first sight of Frank. I was so happy to see him. No matter what ALS was doing to his body, he’s the Opa of my children and has shown me nothing but kindness and generosity in the seven years I knew him. He loved my children with all his might. Despite the logistical challenges of living on two different continents, he and Oma are five-star grandparents, giving endless hours of attention to the children in the form of extended visits together twice a year, countless video chats, phone calls, and packages. As a mother, one of my greatest joys is watching them make my children feel special.

Unable to do anything to help Frank from a scientific or medical standpoint, I simply told him when I arrived, “Perhaps your grandchildren are the best medicine for you at this stage.”

For the next four weeks we spent happy and precious moments with Frank and the rest of the family. We ate long, lazy summer meals in the garden, Opa gave Lance and Vivian on-demand rides on his motorized wheelchair, we swam in a nearby lake, became regulars at the ice cream huts, shared time around the table where we talked and laughed for hours at a time. No one felt sorry for themselves. We put the impending, dark reality of what ALS was doing to his body aside and we enjoyed one another.

Every morning at the breakfast table, Vivian sat next to Opa with importance as he took medication on a spoon full of applesauce to help him swallow the only form of hope currently available. She had her own spoon and snuck bites of his applesauce, smiling up at him with the loving purity of a child.

Vivian and Opa

Vivian and Opa

Lance brought Opa his morning newspaper like it was his job and often snuck little toys inside it, so when Opa unrolled the paper there would be a surprise. Of course, Opa quickly became onto Lance, but played along every single morning as the ritual became a special ceremony between the two of them as they laughed over this silly game.

Lance and Opa

Lance and Opa

Neither of my children saw his handicap and gave Frank only love, expecting nothing in return. I am exceedingly grateful that I was able to witness those moments as the kids showered him with adoration.

Since Frank’s passing, and even before he died, I have written pages and pages about his illness – mostly from an emotional stand-point, but this past summer as an observer in my in-laws home, I collected facts. For four weeks, I watched Frank and Isolde make valiant efforts to keep life steadfast and fight for the next day. Our time together was truly a gift. When I asked Frank if I could write about him, he told me yes and, “You must write what you see,” as it became increasingly difficult for him to talk.

I will hold onto that statement forever. Frank followed my blog from the start and showed interest in my writing through regular comments to me about something he read in my Banter, mostly about the kids. He even helped me pen the opening lines to Two bottles of champagne during my last time with him.

On July 20, 2015, Jan, Lance, Vivian, and I said our gut-wretching goodbyes to Frank. In my heart, I knew it would be the last time I would see him, though I guess you always hold onto a slim ray of hope that there might be “one more time together.”

Fifteen days after my family and I flew back to the United States, Frank rode by ambulance to the hospital where he was admitted into the intensive care unit (ICU) for shallow breathing. For 10 days he struggled with declining respiratory functions. Determined to come back home, he considered his options, at this point only able to communicate by pen and paper.

Ultimately, Frank would not come home. He passed away quietly in the early morning of August 14, 2015, leaving our family devastated by this huge loss.

Again feeling helpless, back in the United States, I started to think about the Ice Bucket Challenge. My husband, who flew over as soon as the doctors began administering morphine into Frank’s body, my brother-in-law and my mother-in-law began the grieving process and faced the sad days that would lie ahead. I waited back home with the  kids until funeral arrangements were made, at which point I bought a plane ticket back to Germany, far too soon, to join the rest of the family.

Beloved by not only his family, but also by his community, his former classmates, his former colleagues, and all those whose lives he touched, Frank was an important man. Known for his radiant spirit and ability to live life to the fullest, he was an accomplished musician and fisherman. After his retirement he was heavily involved in his community, never allowing a birthday or an anniversary or a retirement go uncelebrated without a musical performance. He organized the village’s annual carnival every February where he himself participated with gusto, dressing up as multiple characters throughout the years – Stevie Wonder, The Pope, and Pavarotti among my favorites.

A man who loved to fish.

A man who loved to fish.

Last year when the ALS Ice Bucket Challenge began to explode and money poured in for underfunded research of this disease, I looked the other way. You would think that Jan and I, of all people, would have been some of the first to step up to the plate and take this challenge, but the thought of participating was too painful. We were witnessing first-hand someone with the disease falter in unimaginable ways as his body was held hostage by ALS. Pouring a bucket of ice over our heads seemed futile.

Though amazed and grateful for the awareness and money being raised for ALS, it hit too close to home for us. Frank and Isolde visited us in the United States last September, and one night we all sat around the kitchen table talking about the ALS Ice Bucket Challenge. Most of our conversations ended in stunned silence over Frank’s battle with ALS in tandem with this newfound attention being drawn to the disease.

When Frank passed away, the floodgates of my tears let loose. I am going to miss Frank and his large personality all because of ALS, an unforgiving disease with no cure. I am sad that my husband can no longer have a conversation over a beer with his father. I am sad that my children will grow up without sharing any more memories with their beloved Opa.  I am sad because the disease caused my mother-in-law hours of nonstop care-taking to keep Frank strong and at home for as long as she could. She easily deserves the caregiver of the year award. The way she honored and respected him for 45 years and up until his last day is something I will admire about her forever. I am sad the outcome wasn’t brighter.

Before I flew back to Germany for the funeral, and as I was arranging childcare for Lance and Vivian while I was away, I looked in on the Ice Bucket Challenge Round 2. Feelings stirred that maybe I should do it this year – for Frank. Here we are still in August, not only the month that Frank died, but the month designated by the ALS Association to continue the challenge until there is a cure. Momentum generated within me, but once the harsh reality of Frank’s passing hit me – and it hit me hard when I walked into my in-laws kitchen and looked at the empty chair where Frank always sat – I felt deflated.

In the  meantime, writing about Frank and the Ice Bucket Challenge seemed appropriate for me. I still think I might want to do the ALS Ice Bucket Challenge someday, maybe even next year at the lake Frank loved so much. The lake where he used to drive a boat named after his five grandchildren. But for this year I defer the challenge.

“JoJoNiLaVi” named after Jonas, Josef, Nina, Lance, and Vivian

Instead of sharing a video of someone dumping a bucket of ice on my head, I hope by sharing Frank’s story it gives a personal look behind the curtain of what ALS really does to a person and the family members who must forge ahead without a loved one.

I want anyone reading this story who participated in the ALS Ice Bucket Challenge to see how important their videos and donations are to this cause. Please join me in continuing to raise awareness by sharing Frank’s ALS story, making a donation in his memory, or both. In doing so, I hope for a breakthrough in medicine that will prolong lives and ultimately raise enough research money to discover a cure for ALS.

***

The story ALS Ice Bucket Deferral appeared first on Britta’s Banter

You may also be interested in What a Dad Facing Death Put at the Top of His Bucket List.

About britta326

blogger, picture-taker, diaper-changer, runner

9 thoughts on “ALS Ice Bucket Challenge Deferral

  1. an absolutely beautiful tribute, Britta. And an appeal to be a part of something larger. I will make a contribution today. In honor of your family – and the memory of your family’s beloved father and “Opa”. Thank you for sharing your family’s story so beautifully – and reminding us of the gift of “now” when it comes to being with our loved ones. We are thinking of all of you – Jan, his mother, the grandchildren.

    • Thank you so much for your heartfelt comment and generous decision to make a donation in Frank’s memory. We are so lucky to have you, Joel, and the boys as neighbors and friends. I hope this story reaches others who can relate. Life is a gift.

  2. Hi Britta,

    I’m so sad to read about your father in law and my prayers go to you and your family. This was a beautiful tribute to him.

    I loved your email update this summer and I hope you can forgive me for not responding sooner. I’ve wanted to many times. Katherine misses her first friend Lance and sending you all love.

    Safe travels and love, Laura

    Sent from my iPhone

    >

    • Oh, Laura! It is so wonderful to hear from you regardless of the circumstances. I miss your family. Thank you so much for your prayers. Please give hugs to all three of your beautiful little girls and a special squeeze to Katherine.

  3. This post was so moving simply because, as your father-in-law advised you to do, you wrote about what you saw. Sending you and your family all my best wishes during this difficult time. I think it’s also a blessing that your children are old enough to have memories of their grandfather and will be able to think fondly of him in the future.

  4. Britta, I had no idea Frank had been diagnosed, and I just saw this on FB. My heart breaks for you, Jan, and Isolde. I remember being with him at the hospital when Lance fell, he was such a wonderful, kind, and sweet man. My thoughts and prayers go out to all of you. I’m so glad you all were able to spend that time with him in July. I know you will treasure it. I know Lance and Viv will remember Opa well, because you and Jan will keep his memory alive. Beautiful tribute for a beautiful life lived. I love you guys so much and miss you terribly.

    • Thank you for this, Christie. We love you and miss you, too. Your memory of Frank is so sweet, even though Lance almost put everyone (except Jan and I – ha!) over the edge that night 😉

  5. Pingback: ALS follow-up and new business | Britta's Banter

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