Thank You for Sharing Your Journey with Me

By Heather Burns, MSW, LMSW, ALS Association Care Services Coordinator

Today, I received two phone calls. I had that familiar gut wrenching feeling when the names of the patient’s loved one’s flashed across the giant iPhone screen. I hesitated when answering, as if maybe that could change what the caller was about to say…

“My loved one has passed away.” I knew it was coming before today. I knew it was coming before they picked up the phone to call me. I knew it the moment I walked in to meet the family for the initial home visit, but with ALS, I never truly know when I may actually get that call. Everyone’s progression, while always devastating, is always different.

During both of these calls, the loved one on the other end thanked me for the support I provided them and their family member. After almost four years, I still find myself a bit tongue tied when someone thanks me for what I did for their family. Yes, it is my “job”, but it is a job that I have chosen. I take pride in my work and in helping others. But honestly, I think I struggle with what to say back because how do I appropriately and genuinely express my gratitude towards THEM? My appreciation for having just had the privilege of MEETING them and their beloved? The gratefulness of being welcomed into their home during one of the most vulnerable times of their lives? Learning some of the struggles they faced as a family before this disease even became a factor within an hour of meeting? How do I tell the patients and families that I meet how thankful I am that they have given me perspective on what it means to live? Or what it means to die? Is it even appropriate for me to do so? Would they be taken aback when I say it?

How do I adequately and appropriately express to the men and women that I am meeting in my work, that they are the ones providing me with a service? That they are giving me a gift? It’s not wrapped neatly in Tiffany Blue. I cannot hold it or exchange it for a different size. It is a rare gift with no price tag that money could never buy. It is perspective, it is life lessons, it is sorrow, and it is beautiful.

So, from this point forward, I am making a commitment to those I serve to do better at expressing my thankfulness. To the family’s I have worked with in the past, present, and future I want you to know this: While you are facing one of the most difficult times of your life, a time when you may feel like you have lost a sense of who you are, lost the connection to who you were, or a time when you may have no idea who you will be…thank you. Thank you for giving me the privilege of meeting you and for walking alongside you during this journey.

Lighting the memorial candle at the Springfield Walk to Defeat ALS
Heather Burns lighting the memorial candle at the Walk to Defeat ALS.

Heather Burns began working with the St. Louis Regional Chapter as a care services coordinator in 2013. She assists families by educating them on ALS and symptom management, helping to reduce their financial burden by presenting community resources, and offering emotional support for both patients and caregivers.  She received her Masters of Social Work in 2017 from the University of Missouri, St. Louis.

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.

Idelle thumbnail

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.

A Day in the Life at the ALS Clinic – The Berkley Family

Last week, our national organization featured our friend, Carmen Berkley, on their blog. Carmen shared her morning attending the ALS Certified Center of Excellence at Saint Louis University — the only one in our region. We’d like to share it here with you.

The Official Blog of The ALS Association

Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.

Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.

View original post 278 more words

Behind the Ice Bucket Challenge: How My Own Fight Against ALS Helped Fuel a Phenomenon

Powerful blog post from our friend Pat Quinn, courtesy of WebMD.

By Pat Quinn

When you’re diagnosed with a disease that has a life expectancy of 2-5 years, you will do anything to change that. Almost 5 years ago, I was stunned as I heard my doctor say, “It’s conclusive, we can confidently diagnose you with ALS.” It was the most surreal moment of my life. Sure, I had had some crazy twitching in my arms. Yes, my hands had become weak. But, 2-5 years to live? No, that was unacceptable to me. I was only 30 years old! So, after the initial shock wore off, I decided that I was going to fight.

The disease that was supposed to take my strength started turning me into a pit bull. I became obsessed with bringing attention to ALS – local events, community outreach, speaking, networking – I did everything I could think of to make people aware. I can’t lie – I had selfish motives. I wanted to live. I was entering what should have been the prime of my life – I should have been focusing on the joys of finding love and starting a family, not fighting a terminal disease! My fight to add years to my life grew into a passion to fight not just for myself, but for everyone with ALS. That passion got stronger every time I met a new ALS patient. One of those patients was Pete Frates in Boston, whose website I happened to come across in my online searches. Pete was young, a stellar athlete, and diagnosed with ALS a year before me. I emailed, he answered, and soon we formed a special bond that would eventually play a major role in the biggest movement in the history of philanthropy: the ALS Ice Bucket Challenge.

You may not know it, but the Ice Bucket Challenge wasn’t originally created specifically for ALS. It was going around for a number of different causes until one golfer in Florida took the challenge for his cousin’s husband who had ALS. It caught on in that patient’s town, and the power of social media brought it to my attention. (Thank you Facebook!) I will never forget the day I saw a friend from grade school take the challenge and said he was doing it in my honor. I was blown away, but more importantly, it clicked: If this can connect so easily from one individual to another, we might have something here. Excited about the possibilities, I got my closest friends to dump buckets of ice water over their heads and it spread throughout my network – the one I had so worked so hard to build after diagnosis. Pete took the challenge, too, and shared it to his huge network. No one could have imagined what would unfold next. Soon we were right in the middle of a social media phenomenon! Hundreds of likes on every Facebook post. New videos were being uploaded every couple seconds – literally, seconds! It’s one thing to see your family and friends take the challenge. But somehow, every day it got bigger and bigger! The support for ALS I was hoping to create was taking place right before my eyes. As it happened, my head was spinning. It was surreal. Within a week, while you were probably filming your Ice Bucket Challenge in the backyard, so were the biggest athletes, famous celebrities, and even world leaders.

pat-quinn
Taking the ALS Ice Bucket Challenge in 2015

A worldwide movement like the Ice Bucket Challenge doesn’t just happen. It’s not like any of us were sitting in a dark room drawing up blueprints to orchestrate a massive social media movement. I believe that certain things in your life happen for a reason. Not everything, of course (I’m not crazy), but I truly believe parts of your time here on earth happen for a reason. Life presents us with opportunities, and then it’s up to us to make something happen.

Do I believe I was diagnosed with ALS for a reason? YES. Without getting too spiritual, I know God chose me to take on ALS. I have to believe this. It keeps me going. I was young. I was strong. The people I’ve met throughout my life would do anything for me. That kind of network would have the ability to create necessary awareness.

Do I think the Ice Bucket Challenge started in a town 10 to 15 minutes away from where I lived for a reason? YES.

Do I think I reached out to Pete Frates after diagnosis, became friends, eventually leading us to catapult the Ice Bucket Challenge for a reason? YES. There is no doubt in my mind that we met each other to change the course of ALS. It was our job to recognize its potential and make something happen…that’s exactly what we did!

These days, there’s no awkward pause after I tell someone I have ALS. I no longer have to follow up with “you know, Lou Gehrig’s disease,” because people are aware – and that was the reason for it all. The Ice Bucket Challenge allowed me to accomplish what I set out to do: create unparalleled awareness leading to research that will one day make ALS treatable and, God-willing, cured.

I would do anything to go back to being my normal, pre-ALS self. Anything. But I can’t dwell on that. I am facing an undefeated opponent, and I’m going to do everything I can to beat it. I know that ALS may one day take my physical life, but my fight will last forever.

PQPat Quinn was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in 2013, a month after his 30th birthday. Since then, Pat has become a strong advocate, explaining to others that having no effective treatments or a cure is not acceptable Pat was at the forefront of the ALS Ice Bucket Challenge, which raised over $ 220,000,000 globally. He has spoken before Congress, at companies like Google and Facebook, and at universities across the country. Pat has received many accolades for his advocacy including a nomination for TIME Magazine Person of the Year. To learn more, please visit www.q4tw.com.

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.

Veterans Face Higher Risk of ALS

Existing evidence supports the conclusion that people who have served in the military are at a greater risk of developing ALS and dying from the disease than those with no history of military service. Study after study continues to demonstrate this to be true: If you serve in the military, regardless of the branch of service, regardless of whether you served in the Persian Gulf War, Vietnam, Korea, or World War II, and regardless of whether you served during a time of peace or a time of war, you are at a greater risk of dying from ALS than if you had not served in the military. In fact, a Harvard University research study tracked ex-service members back to 1910 and found that U.S. veterans carry a nearly 60 percent greater risk of contracting ALS than civilians.

Joe Zappa
Joe Zappa, of Collinsville, Illinois, holds a photo of his father.  Joe, also a military veteran, was diagnosed with ALS in 2015.

With your help, our Association has been able to assist military veterans who are fighting ALS.  Some of the efforts your support has made possible:

RESEARCH:
The Association has worked with Congress to establish the ALS Research Program (ALSRP) at the Department of Defense in 2007. The ALSRP is the only ALS research program at the DOD and is focused on translational research, with the specific goal of finding new treatments for the disease. Congress appropriated $7.5 million for the program in 2016, bringing total funding for the program to more than $60 million. This funding has supported 44 ALS research studies which have resulted in 25 peer reviewed publications and, most importantly, the discovery of four potential treatments for ALS.

ADVOCACY:
Thanks to the efforts of The ALS Advocates, key members of Congress, advocates and the Department of Veterans Affairs, ALS has been listed as a disease entitled to presumptive service connection. This means that if a service member is diagnosed with ALS his or her condition will be presumed to have occurred during or been aggravated by military service and as such be entitled to service connection and full benefits. These benefits are described briefly below. An overview of benefits available to veterans, survivors and dependents is available from the VA here.

CASE MANAGEMENT:
In-home consultations by an ALS case manager to help assess, plan and facilitate care, and evaluate and advocate for options and services to meet the individual with ALS’s health needs through available resources.

ALS-SPECIFIC HEALTHCARE:
The VA St. Louis John Cochran Division, in partnership with The ALS Association St. Louis Regional Chapter opened the doors to a multidisciplinary ALS clinic this past May.  It offers local veterans multidisciplinary clinical services under the expertise of a team of staff who are dedicated to the care, understanding and treatment of ALS.  Under the direction of Dr. Brian Sommerville, the clinic is held on a bi-monthly basis on the 1st and 3rd Fridays of each month. The Veterans Administration has the ability to provide comprehensive interdisciplinary ALS care that includes not only essential disciplines but also VA-specific programs such as Home Based Primary Care and integrated hospice and palliative care services.

COLLABORATION:
The ALS Association works directly with the Paralyzed Veterans Association to advocate for Veterans living with ALS. The Paralyzed Veterans of America is a congressionally chartered veterans service organization founded in 1946 that has developed a unique expertise on a wide variety of issues for veterans with spinal cord injuries, including ALS.   Benefits Advocates are available to help ensure that you receive all service connected benefits.

Thank you for your support of our nation’s military heroes as they fight yet another battle – ALS. For more information on the link between ALS and the military, and the programs and services available to veterans with ALS, please visit our website.

Telling Children About ALS

A diagnosis of ALS can be frightening and challenging for most adults. You may be feeling angry, confused, sad, or afraid. You may not even fully understand what ALS is or the impact this disease will have on you and your family. You may also not know how to tell others about your diagnosis, what words to use, or how in-depth your explanation should be. Telling other adult family members and friends may be difficult enough, but finding the words to tell your children is often even harder.

As parents and grandparents, a natural tendency is to protect or shield children from the worries and fears of a serious illness in the family. However, do not be fooled into thinking that your children do not know something is wrong, even if you have not told them. Even the youngest child has the uncanny knack of sensing or figuring out that something is seriously wrong. If you have not opened the dialogue about ALS with your child, he/she may not feel comfortable asking or talking with you about what is going on. Without this conversation, your child can live with fears and worries of the unknown. A child’s creative imagination can often conger up scenarios that are grossly inaccurate or terribly frightening. Children can even feel they are somehow to blame for what is wrong and live with unfounded guilt. Therefore, honesty is definitely the best policy when sharing your medical situation with children.

In addition to alleviating children’s fears, honesty about ALS also promotes the notion that ALS is not something about which the child should be embarrassed or ashamed. As new changes develop in your health and abilities, allowing the child to understand and discuss these changes gives him/her a greater sense of trust in you. The only thing scarier for a child than having a parent who is seriously ill is not having a sense of trust and comfort with you, their primary source of security.

Speaking to your child in an age appropriate manner is equally as important as being honest about your disease. Not only do children learn and absorb information differently than adults, but they process information differently based upon several developmental stages in their childhood. Intellectually and emotionally, a preschool age child cannot comprehend what an elementary school child can. The same is true for older age groups; their ability to understand and process information and concepts hinges on their developmental maturity. Therefore, the language you use to explain your disease and the amount of information you provide should be determined by the age of your child. If you have children of varying developmental ages, you should be discussing your diagnosis differently with each child. The key is to provide each of them with information that is age appropriate, while introducing a dialogue for future discussion and building an atmosphere of trust and openness.

In talking with your child, use words that your child can comprehend. Clarify your child’s understanding as you discuss ALS and its impact on you and your family. It is not uncommon for children to misinterpret what you are saying, simply because they did not understand an explanation or comment you have made. Children may also feel guilty, thinking that in some way they have caused your disease. It is important to reassure them that while doctors do not know exactly what causes ALS, we do know it was not caused by anything you or your child has done or said.

Encourage your children to ask questions and respond as honestly as you can.  However, consider the meaning of their inquiries when responding to them. For example, if you should fall and your young child asks, “Are you okay?,” s/he is probably wanting to know if you are hurt by your mishap. An older child, however, is more likely to be associating your fall with your diagnosis and may be asking if ALS will continue to affect you in this way. Gauge the complexity of your answer to the age of your child and the context of the question. Remember that children often learn in smaller “bites” of information, so tailor your responses accordingly. For example, when asked by your child if you will “get better,” you may need to differentiate between a reply about symptom management versus a disease cure. For a younger child, you may want to explain that through managing and accommodating your symptoms, you can move, breathe, or speak “better.” However, for an older child or a child who has more knowledge about your illness, you may need to directly address the fact that there is no cure to stop the disease or reverse the effects it has had on you.

Besides establishing an environment of security and trust, sharing information about your ALS diagnosis should also convey several other messages to your children. Through your honesty and openness, your children/grandchildren will have the basic tools for helping live well together as a family touched by ALS.

  • Be willing to admit that ALS is a confusing and upsetting disease. Explain that it is hard to understand why ALS happens and what effects it will have on you and your family. Acknowledge your frustration as well as theirs.
  • Emphasize that no one is at fault for your getting ALS. Explain that doctors and scientists do not know exactly what causes ALS. Especially point out that nothing you and anyone else did caused your ALS. ALS is not a punishment.
  • Stress acceptance and respect for yourself (or the family member with ALS). Encourage your children to ask questions about this disease and its impact on your life. Also, support their efforts to offer help at what ever level they are able.
  • Offer optimism and hope. Researchers are working every day to find a treatment and/or a cure. They may find positive results at any time.
    • Also, be willing to “live in the moment.” Allow yourself and your family to enjoy the joys of each day as they occur. This perspective offers continual hope for “good” days together as you live with ALS.

Children’s Reactions

You should also be aware that your children’s reaction may be different than you expect. For instance, your child may seem disinterested, or ask questions that seem irrelevant. He/she may abruptly begin playing with toys during a conversation or act out in his/her play. Children may demonstrate a range of emotions, initially being angry or sad, but moving quickly into silliness or happiness. All of these reactions are normal for children. It is important to understand that they are processing as is appropriate for children of their developmental age. Allow your children time to process the information and work through these reactions. Expression of their emotions and feelings is healthy. Your children need to be allowed to accommodate these changes into their lives, developing the coping skills that will help them, while allowing for on-going openness and dialogue about the changes that are occurring.

Other considerations

As your disease progresses, you will want to keep the lines of communication open and help your child understand and prepare for what is happening. Please consider the following issues:

  • Explain changes in your health as they occur in age appropriate terms that your child will understand.
  • Do not assume that your child will react to each of your medical or physical changes. Reassess what your child is thinking and feeling. S/he may not be affected by changes as you think they might; alternatively, s/he may be greatly affected by something that you consider minor.
  • Validate their feelings as normal. Every emotion they have can be “normal.” Help them find positive ways to express these emotions.
  • Recognize that, as your medical condition changes, so will your physical appearance. Acknowledge with your child the social reactions you get and help them to understand that others may react negatively or rudely due to being fearful or uninformed about a disease they do not understand.
  • Talk with your child about issues other than ALS. Ask questions about school, friends, hobbies, television shows, or internet games. Remain an active part of their lives.
  • Explain to your child that your irritability or personality changes may be due to the progression of your ALS. Watch for signs of anxiety or feelings of discouragement from your child; they may be feeling that they are to blame for your negative moods.

References for this article:
BJC Hospice and Supportive Care. A child’s concept of death by Sister Teresa McIntier, R.N., M.S.

BJC Hospice and Supportive Care. Young adults and grief: Information packet by Beth Barrett, MSW.

Fieldman, Laurie B. Presentation handout: How to help children coping with ALS in the family.