Remembering and Reflecting: Creating a Keepsake for your Family

As one faces a terminal illness, such as ALS, it can be rewarding and fulfilling to review one’s life journey and reminisce about favorite people, experiences, and events, for remembering and reflecting on your life, in order to help you celebrate your successes, cherish your loved ones, and honor your journey.  It is also important to reconcile or accommodate difficult or painful memories or events, providing an opportunity to forgive yourself and others if appropriate.  Especially during this time of year when we are celebrating holidays and are with family and friends, projects such as the ones below can make very meaningful gifts, not only to those you love, but also as a gift to yourself.

Life Review Timeline:  Place the major events of your life on a timeline. You may need several pieces of paper taped together or a large poster board to accommodate the length of your timeline. Include your successes, special dates, important events, and favorite memories. If you are willing, allow other family members and friends to contribute their memories of you, too. This activity allows you to acknowledge your accomplishments, reflect on troublesome or painful events, and recognize special people or times throughout your life. This timeline, created by you, will also serve as a wonderful keepsake for your family.

Count Your Blessings:  Make a list of all the things you are thankful for. such as loved ones, friends, possessions, special events, honors, successes, and abilities. Whenever you need a “pick me up,” read through your list and reflect on all the things that you are thankful for. Another option is to keep a “Blessings Journal” by writing five things you are thankful for at the end of each day. Some days your lists may look the same; other days you may find new treasures to be thankful for. By focusing and considering all these positive influences, you are celebrating the life you have created and honoring the blessings that have been given to you.

Messages to Loved Ones:  This activity can take several forms, all of which provide your loved ones with tangible messages from you for the future.

  • Video taped messages: Have someone video tape you as you record messages to your loved ones, to be viewed at a later date. These messages could be your thoughts and wishes on special occasions, such as birthdays, graduations, or weddings, or they could be general communications that you would like your loved ones to be able to replay and share in the future.
  • Voice recorded messages: You can also record a verbal message, without the visuals of the video, for your loved ones under the same guidelines as above.
  • Written letters: Write or type letters to loved ones expressing your thoughts and wishes. You can also dictate your letter to a trusted friend or family member, if you are unable to write. These letters can be sealed and dated to be opened at a time of your designation.

All About Me:  Record answers to questions. That can be used as queries or for a starting point for discussing your life, your dreams, your ambitions, and your reflections with your loved ones. Have someone record or write down your responses to create a treasured collection of your responses.

  • Who was your best friend in childhood?
  • Where did you live when you first moved out of your parents’ house on your own?
  • Of all the cars you have owned, which was your favorite and why?
  • What is your favorite book?
  • What is your favorite song?
  • What is your favorite movie?
  • What is your favorite food?
  • How did you meet your spouse/partner
    • Talk about your dating/courtship.
    • Who proposed to whom and how?
  • What was your first job
  • If you could have been in any occupation, what would it have been and why?
  • When you were a child, what did you want to be when you grew up?
  • What quality do you think is most important in a friend?
  • What is your favorite attribute or ability in yourself?
  • What was the scariest moment in your life?
  • What was the funniest thing to ever happen to you?
  • What was the saddest moment or event in your life?
  • What was the most unusual thing that ever happened to you?
  • If you were stranded on a desert island, which three things or people would you want to have with you?
  • If you could change one thing that you did in your life, what would it be?
  • What are you proudest of?
  • What is your favorite hobby and why?
  • What was your favorite subject in school and why?
  • Name three people who influenced your life the most
  • Which teacher had the biggest impact on you and why?
  • If your life story was made into a movie, who would portray you?
  • If a genie could grant you three wishes, what would they be?
  • What is your lucky number?
  • Describe your greatest adventure
  • Talk about a time when you were awestruck
  • What was your favorite thing about your mother?
  • What was your favorite thing about your father?
  • What was the nicest thing someone ever did for you?
  • What makes you laugh?
  • Name three people who you admire and why

Journaling:  Keep a journal of your thoughts, concerns, wishes, and feelings. Journaling can be a cathartic way of expressing emotions and releasing pent-up feelings. It can also serve as a process of self-reflection, soul-searching, and life celebration. Don’t over think what you are writing; allow your thoughts to flow onto the paper without editing or critiquing yourself. This process will allow you to address issues that are concerning you and work through difficult or unknown problems. It will also allow you to document what is important and meaningful to you.

We want to know what has helped you.  Please let us know in the comments if you have tried any of these ideas for reflecting or if you have found something else that helps you.

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.

Resources for Caregivers

During National Family Caregivers Month, we recognize and thank the everyday heroes who devote their time and energy to taking care of a loved one.  Millions of people around the country take on the role of caregiver for friends and family members; providing care day and night, on the weekends and even on demand.  Many people, especially those that need long-term care, rely on family and friends as their only source of help.  While many take this on out of love and receive satisfaction from caregiving, it can take a toll over time and even cause detrimental effects to the caregiver’s health and well-being.  It is important for caregivers to make sure they are taking care of themselves, even as they are taking care of others.  Below we have compiled a list of resources to help those in our community navigate the world of caregiving:

Websites

ALS Association St. Louis Regional Chapter

ALS/MND Support Group Forums

ALS Association Support Community- Inspire

Voyce

National Alliance for Caregiving

Family Caregiver Alliance

Caregiver Action Network

AARP

Books

Caregiving: The Spiritual Journey of Love, Loss and Renewal by Beth Witrogen McLeod

Put Your Mask On First: The Caregiver’s Guide to Self-Care by Dr. Gary Bradt and Scott Silknitter

Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill by Cappy Capossela and Sheila Warnock

Transcending Loss by Ashley Davis Bush

 

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.

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.

Photo for Blog #3
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.