Caregiver Confidential: “Laughter Is the Best Medicine”

A few weeks ago, I asked my friend Jessica if she had any ideas for future posts. Jessica replied, “What about the role of laughter in illness?” Initially, I rejected that suggestion. After all, what part of ALS was funny? I reflected back to my husband Brian’s courageous struggle with the disease, and I didn’t recall us sharing any light or humorous moments. However, the more I ruminated on the topic, the more fascinated I became. I was familiar with the old adage, “laughter is the best medicine,” but could this expression apply to patients with terminal illness?

My investigation started with a phone call to my daughter Leah. “Did you and your Dad share any funny moments when he was sick,” I asked? Leah recalled that Brian and his sister Joyce had a good laugh creating silly and outrageous epitaphs for Brian’s headstone during a 2008 visit. My friend Jessica also concurred that Brian made some humorous remarks to her. With my new-found knowledge, or memory jogged, that Brian occasionally expressed humor about his illness and mortality, my interest was piqued. But what did the experts have to say?

In fact, what does “Laughter is the best medicine” mean? According to various sources, this saying refers to the potential health benefits of laughter, including a reduction in pain, anxiety, and fear. Another important health benefit may be the sense of well-being and improvement in mood. According to Cancer.Net, “Laughter can provide a sense of perspective when you are faced with challenging circumstances.”

While researching the role of humor specifically in ALS, I came across an inspiring article from the Washington Times, “Couple Uses Laughter, Love in Fight With ALS.” The following captures the importance of humor and positive outlook for ALS patients and their families: “The amazing thing about Kip? He can’t move a thing on his body. He can’t speak. He can’t breathe on his own. But he’s still so funny—so funny and charming. ALS isn’t an immediate death sentence. Your quality of life can still be fulfilling with this disease.”

In another example, ALS Worldwide published a post, “Humor Is a Great Medicine”, Ken, an ALS patient, stated, “As I continue to fight this ugly disease, joking helps me get through the most challenging times. It is critically important to keep a sense of humor when you have ALS. There are funny and absurd moments to be found every day if you are aware. Humor is what helps me stay positive and it makes this disease more bearable.”

In retrospect, I realize that Brian was being himself despite his disease—a person with a good sense of humor who could laugh at himself or the absurdity of a situation (unfortunately, ALS provides plenty of material). I, on the other hand, never found anything remotely funny about caregiving or ALS. In reference to my earlier anecdote about the epitaphs, I remember feeling appalled and disapproving that Brian and Joyce were engaging in what I perceived as morbid behavior. In reality, I think everyone finds their own way to cope with challenging, life-altering situations; some use humor like Brian, whereas others use escapism and denial, like me. Reflecting back, I wish I had seen the bigger picture, so we could have shared some laughs together, as we did when Brian was healthy. Only now do I acknowledge that humor can be a positive attribute and coping mechanism when facing terminal illness and mortality. It makes us human and allows us to live life to the fullest.

Have you and your loved one shared any funny moments? How do you feel about humor in the context of terminal illness? Please share your experiences and thoughts in the comments section. Let’s continue the conversation.

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Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.

Caregiver Confidential Goes Monthly

In my first 3 posts, I related my family’s journey with ALS, hoping that other caregivers would connect with some aspects of my experience. Going forward, Caregiver Confidential will be a monthly forum for caregivers to share ideas and the unique experiences and perspectives of caring for a loved one with ALS.

But first, let me describe how my daughter Leah and I coped after my husband Brian passed away in 2010. Although the first year as a widow was a huge life adjustment, I still had a semblance of my pre-ALS life. Leah was living at home, working, and applying to medical school. I enjoyed being part of her journey into medicine, and it kept me mentally occupied. Then the bottom fell out—Leah left to attend medical school in Philadelphia in July 2011, which was a painfully difficult adjustment and the point at which I was forced to confront that I was now alone, as a single person, after a 36-year marriage. Slowly, I have regained my footing, but I also have had considerable time to ruminate about my experience as a caregiver.

So, what did I learn from being a caregiver to a loved one with ALS? Here’s a brief partial list (I will go into greater length on some of these topics in future posts):

  1. Adopt the sentiment, “Today is the best day of your life.” While there is always hope even in terminal illness, try to live with your loved one in the moment, because you do not know what tomorrow will bring. (This mindset runs counter-intuitive to the saying, “Tomorrow will be a better day.”) Maybe go on that once-in-a-lifetime vacation, for example, to create memories.
  2. Be flexible in your approach to caregiving and do not have any expectations. So much about ALS is out of your control.
  3. As the primary caregiver, take care of your own health and needs. Do not be afraid to ask for help or think it reflects poorly on you if you cannot manage all of the caregiving duties. A break from caregiving will make you a better, more patient caregiver.
  4. Forgive yourself for having bad moments with your loved one. It is okay to feel angry, overwhelmed, and resentful at times. Being a caregiver to a loved one with ALS may be the most challenging job you will ever have.
  5. Seek out professional help, be it a counselor, clergy, and/or social worker. Getting another perspective or talking to a professional can be very therapeutic.
  6. Remember that the ALS Association is a wonderful resource and partner for dealing with many aspects of ALS. I can attest from personal experience that Beth Barrett of the St. Louis office was key to many of our family’s caregiving decisions.

What lessons have you learned as a caregiver? What suggestions would you pass along to other caregivers? Please share your experiences in the comments section. Let’s continue the conversation.

Idelle Winer

Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.

Caregiver Confidential will run the first Friday of every month. Subscribe now, so you don’t miss a post!

How Can I Help?

More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. (Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009)

Caregiving for someone with ALS – while done with a great deal of love and devotion – often times exacts a great emotional and physical toll for the caregiver. Caregivers are often employed outside the home and may be the primary source of household income, which adds even more demands, responsibilities and stress.

Human nature drives us to offer a helping hand to those that we love when they are faced with a terminal illness. Ironically, also just as human, is the tendency for the caregiver to push that hand away because they view this responsibility as MY job and MY job alone or I SHOULD be able to do this by myself.   However, Caregiver Burnout Research tells us that all caregivers, especially those caring for someone with ALS, need help.

During the holidays, the demands on families are greater, and so too is the demand on the caregiver’s time.  So how can you help a friend or loved one who is a caregiver?  What is the real answer to “How can I help?”

Don’t get discouraged when an immediate need or way to help can’t be identified. The answer to how can I help  can easily become one more task to complete ~ oftentimes, the caregiver, struggles with identifying what help is needed to manage the changing roles in their family life – juggling, health, home, work, relationships, kids ~ that they just do it and not realize other people could help too.

  • Be Proactive: Think about your loved ones life and daily routine and volunteer with a suggestion on how you can help – don’t ask how; tell how. Needs will change periodically, so evaluate your suggestions and make adjustments overtime.
  • Be Consistent and Patient: Many people offer help just after a diagnosis, but just as time fades, so do intentions, especially if your own need to help is met quickly. It may take time for the caregiver to admit and accept help.
  •  Be Reliable: If you say you are going to do it, Do it!  Caregivers need to trust that the task is handled so their focus can be on the relationship and emotional support with their loved one who has an illness.
  • Be the Leader: Start a care connection team to recruit/manage other volunteers to help create schedules so that the caregiver knows who and what to expect when.  Click here for a great online tool to help!

What are some things you might volunteer to do for your friend or loved one who is a caregiver?  Here’s just an example:

Do the laundry
Take out the garbage
Give a pedicure/manicure
Cook dinner
Take the patient for a drive
Feed the cat/dog
Change the sheets
Give a massage
Bring some videos
Write a holiday letter, photocopy, and mail it with the patient’s holiday cards
Bring some fresh flowers
Write a poem
Transport children to or from school
Water the plants
Rake the lawn
Buy a cheery new bedspread

You can find an entire list of tasks you might be able to tackle for a caregiver on our website.

Remember,  the most important thing you can do for your friend or loved one who is a caregiver is to be present, listen, and remain connected. For more information on caregiving and preventing burnout, visit www.alsa-stl.org.

Ring the Bells

By Idelle Winer

Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in.

—Leonard Cohen, “Anthem”

Remember the exaltation of discovering a new musician or poet? In July 2009, my husband Brian had that experience after watching a DVD of Leonard Cohen’s Live in London concert. Brian enjoyed a variety of music genres, ranging from rock music to Broadway musicals, but did not listen to Leonard Cohen. After viewing the DVD, however, Brian became Cohen’s biggest fan—he dubbed it the “religion of Lenny.” Brian even took the DVD to the ICU when he had his feeding tube placed in August 2009, discussing the meaning behind many of Cohen’s lyrics with the hospital’s rabbi and ICU nurses. Brian was hooked, listening religiously until the end of his life.

Brian remained in relatively good health in retirement until October 2008, when he developed breathing problems. He had a setback in late October when he collapsed from shortness of breath. Unfortunately, our daughter Leah had just walked in the front door when this event occurred. We rushed Brian to the hospital, where he remained in the ICU for almost 2 weeks. He was placed on a Bi-PAP machine to support his breathing.

Until June 2009, Brian did well at home. Although confined to a wheelchair and immobile for the most part, Brian could still speak, project his voice, and swallow food (he loved to eat!). He could go for short periods without use of the Bi-PAP, which made it easier for him to communicate and eat. However, due to a decline in his breathing, we had to decide whether Brian should undergo feeding tube placement. Brian did not want any invasive life-sustaining measures, but because he could still speak, he went ahead with the procedure.

Over the next 6 to 9 months, Brian lost his ability to speak clearly. Verbal exchanges that previously took seconds could consume half an hour, and speech required unprecedented effort, given his respiratory difficulties. I looked into a variety of assistive devices and microphones to help project his voice, but this proved unsuccessful because Brian could no longer enunciate, his voice was soft, and the Bi-PAP mask, which he now wore full-time, was incompatible with most microphones.

I recall a conversation in 2010 with Beth Barrett from the ALS Association, in which we discussed various topics, ranging from types of assistive devices to the decision of whether to undergo invasive, life-prolonging procedures. Beth explained that every ALS patient draws a “line in the sand” and defines what constitutes quality of life. In retrospect, the ability to talk and be understood was Brian’s line in the sand.

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Brian and Idelle, July 2007

That brings me back to Leonard Cohen. Brian found joy, solace, and hope in the lyrics of many Cohen songs. As Rabbi Lynn Goldstein stated so eloquently in Brian’s eulogy:

Brian had a verse that he loved, from Leonard Cohen’s Ring the bells [“Anthem”]. He loved the chorus particularly, and quoted it often, especially when things were difficult. This song reminds us that even in the most difficult times, there is a crack and light will inevitably come in. In his last years, there was no way anyone could cure his illness. There was no way for him to return to the healthy individual he had been. But, Brian believed deeply that there was still light, that nothing was perfect, but he would do his very best with the hand dealt him, that he would look for the light, let it in, and enjoy living in that light with those he loved to the very best of his ability, with all his heart, with all his soul, and with all his might.

Brian passed away at home on the morning of August 24, 2010. He was 60 years old.

What challenges have your family faced with ALS? How have you coped? Please share your experiences in the comments section. Let’s continue the conversation.

For more information on ALS and resources for caregivers, please visit www.alsa-stl.org.
You can read more about Idelle and Brian’s journey here.

Caregiver Confidential: Can Hope and Acceptance Coexist with an ALS Diagnosis?

By Idelle Winer

I believe in the sentiment, “Hope springs eternal.” In the context of illness, hope is the belief that a patient will improve. Acceptance, on the other hand, suggests a patient’s coming to terms with a disease. Therefore, how do you reconcile hope with a diagnosis of ALS? Can hope and acceptance of a terminal disease coexist? I think the answer is yes.

But first, how did Brian finally tell me that he had ALS? From 2005 to 2007, I observed a slow but steady decline in the use of his right hand. Brian had trouble signing his name, cutting his food, and tying his tie for work and often asked me for assistance. Of course, I suspected that Brian had ALS but did not confront him. (I preferred a state of denial.)

One Sunday in May 2007, we were in the family room, waiting for the arrival of our daughter Leah’s friend Lauren, who planned to store some belongings in our basement over the summer. Just before the doorbell rung, Brian blurted out that his possible diagnosis of ALS had been confirmed. He was concerned that he would be unable to help Lauren move her belongings into the basement and needed to create a credible cover story.

The story we concocted was that Brian fell on our driveway over the winter, resulting in an injury to his right hand. To make the fall appear realistic, he previously purchased a hand brace to cover most of his right hand and fingers and disguise the muscle wasting that was apparent without the brace. (The photo of Brian in my first post shows the brace on his right hand.) Family, friends, and professional colleagues believed this story, allowing us to keep our secret for a few more months, even from our daughter Leah. Brian finally told Leah in July 2007, which was the only time I saw him show emotion about his diagnosis.

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Brian and Leah, May 2009. Last photo of Brian.

After the truth came out, we had our first home visit from Beth Barrett from the ALS Association. Beth’s compassion, knowledge, and support were indispensable to our family’s ability to cope with the many challenges of the disease. We had a true partner and friend in Beth, someone we could rely on.

How specifically did hope manifest for Brian? I think that Brian found peace in knowing his ultimate fate; in other words, having a terminal illness like ALS set him free from the false hope of recovery. His acceptance also provided a model for us, and we took his lead regarding how to respond and think about his diagnosis.

How does hope manifest for your family and loved one? Please share your story in Caregiver Confidential. Let’s continue the conversation.

For more information and resources about ALS, please visit alsa-stl.org.  You can read more about Idelle and Brian’s journey here.

Caregiver Confidential: Diagnosis and Denial

Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer.  Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.

Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.

Late in 2004 Brian started to develop problems with his right hand and thumb. His earliest symptoms were that he could not tear sheets from a legal pad and he was dropping pills. Brian went to his primary care physician in May 2005 when his symptoms did not improve. Brian was then referred to a neurologist for evaluation. In July 2005 Brian underwent further testing at Washington University and was told that he may have ALS, which required follow-up to establish a definitive diagnosis.

I vividly remember the July day that Brian broke the news to me. It was late afternoon—a sunny, ordinary day really—and I was watching TV, waiting for Brian to return from neurological testing. I wasn’t particularly concerned that anything was seriously wrong and in fact thought his right thumb weakness was from an old high school football injury.

When Brian walked through the front door, he looked stunned. He calmly related that he could have ALS but would not know definitely for a while. I started to cry. How could he have such a devastating diagnosis? How and why did he get this terrible disease? How could this be happening when our daughter was starting college in the fall and at this stage of our lives?

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Brian, July 2007

Reflecting back, my first awareness of ALS was from watching The Pride of the Yankees after school as a young kid. I wasn’t particularly interested in baseball but was deeply impressed by the inspirational and courageous message of Lou Gehrig. Although I didn’t understand the first thing about ALS, Lou Gehrig’s luckiest man speech left an indelible mark on me. It seemed ironic that Brian had ALS because his favorite baseball team growing up was the Yankees, and now he shared the same disease as one of his heroes.

For the next 6 months, I read as much information as I could on ALS. The ALS Association was a wonderful resource of online information, ranging from symptoms to clinical trials and research, to caregiver resources. I was so desperate for an alternative diagnosis that I even called the St. Louis office, looking for reassurance. I constantly stared at his right arm, hand, and thumb to see if there were any visible signs of muscle wasting. After each office visit between August 2005 and February 2006, I asked Brian if the neurologist was any closer to making a definitive diagnosis. Each time Brian told me his symptoms were about the same with little change or progression, allowing me to cling to the false hope that there was another explanation for his symptoms. Despite my wishful thinking, Brian was officially diagnosed with ALS in February 2006.

How did your loved one learn of his or her diagnosis? What were the initial symptoms that brought your loved one to a physician? How did you and your loved one cope with the diagnosis? Please share your experiences in comments section and  let’s continue the conversation.

You can send your questions or post suggestions to Idelle at alsastl@alsastl.org. For more information and resources on caring for a person with ALS, please visit alsa-stl.org.

Growing Up With a Parent Who Has ALS: What I Learned

By Kelsey Lester

Growing up my chores included: cleaning my room, doing the dishes, putting the laundry away, and suctioning my dad’s throat cannula. The last chore isn’t typical of most kids, but my growing up wasn’t typical. My dad was diagnosed with Lou Gehrig’s disease in October 1993. I was born in May of 1995, and my dad is still kickin’ it, so my relationship with ALS has been longer than most. My childhood and teen years didn’t only include household chores that were different, but also different life lessons.

So, here is what I learned growing up in an ALS household…

I learned about how fragile life is.

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Jeff Lester and Kelsey Lester

Some of the first memories I have as a kid are of me laying on the grass, staring up at the sky, and trying to understand the concepts of life, death, and why we are on Earth. While this isn’t the typical worries of a kindergartner, these concepts are what I had to process through at a young age. I had to understand that life is a gift that needs to be cherished and shared with others. The idea that our time on Earth is fleeting and could change or end at any moment has been a focal point in how I choose to live my life. My sisters and I are all people who try to live each day to its fullest and achieve all that we can, which I know is a direct result of our understanding that life doesn’t always go as planned.

I learned about tenacity.

Tenacity, perseverance, and confidence are the attributes I have seen in my dad as he has battled ALS. Seeing these traits in him while growing up has shaped how I view the struggle of life, and to what extent I let life get me down. Life can throw curve balls at us at times, but doesn’t mean that we can’t stand back up after we’ve been hit. My life isn’t an easy walk, but I can stand tall knowing that nothing can happen where I can’t choose to persevere. My dad used to joke when I would have to give my life quote for school activities that it would be, “build a bridge and get over it,” which I did use for my high school graduation speech. My dad’s fight has shown me that each mountain has a valley, but that the trek back up the mountain is worth it. I know that life can be hard, but that in the grand scheme of things, our lives, even with ALS, are filled with blessings.

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I learned what loving another person means.

Being in an ALS household doesn’t end with my dad having ALS. Having a parent who has ALS, also means that I have a full-time caregiver as a parent. My mom has stood next to my dad through all the stages as his mobility decreased, and has taken care of him 24/7 for over twenty-two years. My parents are a testimony that love and marriage aren’t only about the milestones you want to experience with another person, but also about the sacrifices you are willing to make for another person. My parents have sacrificed everything for each other and our family, which shows since they are still married in a society that has a divorce epidemic. My parents aren’t perfect, but they have, through ALS, set a standard for what love is.

And most of all…

I learned to laugh.

My family is always laughing. I would say that my parents have more reason than most people to be angry at the world, and to live a life of negativity. Instead, my parents chose positivity. With each hard time that my family has gone through, we have been there to pick each other up, and enjoy our time together by making fun of each other and the world that we live in. While I would say the downside to this is my crude sense of humor, I know that the upside of being able to laugh anything off and truly enjoy the company of others. Nothing can stop the laughter of my family, not even ALS.

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Lisa, Jeff and Kelsey Lester

Kelsey Lester, a recent graduate of Missouri State University, served as a communications and marketing intern for our Chapter last summer, and was our Walk to Defeat ALS Facebook Live correspondent this past June. Since getting her bachelor’s degree in May, Kelsey has moved to St. Louis, traveled to Africa, and is preparing to apply to law school.

For more information on ALS, please visit www.alsa-stl.org.