Caregiver Confidential: Memories

We didn’t realize we were making memories, we just knew we were having fun.
—Unknown

A few weeks ago, I was sorting through boxes of family photos in the hope of organizing and creating some photo albums. During my search, I came across photos from our trips to Mexico and Hawaii in 2006 through 2008. Although my husband Brian had been diagnosed with ALS when the photos were taken, I had fond memories of our vacations. I recalled how much Brian, our daughter Leah, and I enjoyed ourselves despite his illness. We had never been to Playa del Carmen, Puerto Vallarta, and the Hawaiian Islands, so each trip was magical and a new adventure. Although somewhat challenging to travel with Brian as his disease progressed, in retrospect I am so thankful that we created happy memories during what otherwise was a very sad period.

I can attest to the importance of spending meaningful family time that does not dwell on your loved one’s illness. When we took our 2006 trip to Mexico, our daughter Leah was unaware that Brian had ALS. Brian’s symptoms were barely noticeable to anyone but me. On our next excursion in November 2007, Brian had just retired from his law practice and had told colleagues, friends, and family about his diagnosis. Brian enjoyed our trip to Puerto Vallarta, whether the cuisine, music, or walks on the beach. Fortunately, he had only minor physical limitations.

By the time of our vacation to Hawaii in January 2008, however, we needed to be creative in our approach to vacation activities. We could not do hikes or big excursions because Brian’s balance and mobility were limited. Instead we stuck to walks on paved sidewalks along the beach, driving tours with stops, and lots of wonderful eating. We enjoyed a Luau and took an amazing whale watching tour. Simply put: We had a great time.

Hawaii vacation
Idelle, Leah, and Brian enjoying dinner in Hawaii, January 2008.

We also created some wonderful memories by hosting a family reunion for all the Winer cousins in May 2008. Initially when Brian’s sister Joyce proposed St. Louis as the reunion site, I was unsure whether it was a good idea. It turned out to be a great idea and a much-needed distraction from wheelchair shopping and home modification. Brian and I enjoyed making the hotel and restaurant reservations, hosting a welcome cocktail party at our home, and engaging in good conversation with supportive family. It was the best medicine that could have been prescribed.

My message here is simple: Create a legacy of happy memories for your entire family while you can. It does not matter where you go and what you do; it is the people you are with that matters. With ALS, there is such a small window of opportunity to make memories and share meaningful time together, aspects of life that healthy people all too often take for granted. For an ALS patient, today—not tomorrow—is the best day of one’s life, and it is important to make every moment count.

How has your family created lasting memories? What activities have you enjoyed together? Please share your experiences and thoughts on this or any aspect of caregiving, current or past, 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.

Technologies That Make Life Easier for Caregivers

By June Duncan

Assistive technologies for the disabled have come a long way since the advent of automated wheelchairs and hearing aids. Smart technology has opened a new world of possibilities for people with disabilities and those who care for them. Smartphones, tablets, and an ever-growing list of apps are helping the disabled improve mobility, communication capabilities, speech, and vision. One of the greatest benefits is the ability to foster better communication between the disabled and their caregivers. Today, technology enables disabled persons to care for themselves more effectively, which makes things easier on caregivers, who often suffer from fatigue and burnout. Technology also helps give disabled persons more independence and a greater sense of confidence and control over their own environment.

Speech

Tablets have become a valuable tool, helping people with speech disabilities communicate through apps that provide access to an extensive list of words. Augie AAC and Speak for Yourself give people access to more than 13,000 words with the tap of a finger. Both apps transform your tablet into a device for people who have autism, cerebral palsy, and other conditions that constitute a complex communications need. It even aids the development of verbal speech.

Smartphone Navigation

Smartphones today are dynamic tools for communicating and accessing information. Speech recognition technology allows people with visual impairments or learning disabilities to use smartphones. It’s an especially useful tool for people with dyslexia. It reads texts and emails out loud and even allows users to use social media sites like Instagram. Apple has been a pioneer for decades in different forms of smart technology aimed at helping disabled people live more independent lives. Its assistive touch technology helps people with motor-control problems use an iPhone or iPad without having to use their fingers in complex ways to size the screen and adjust touch-based controls (like volume control) more easily. Voice-activated systems can also help visually impaired people control their home entertainment systems.

Notification Light System

One especially useful notification system can be customized to communicate different messages to hearing-impaired individuals through a system of multicolored lights that can alert them, for example, when someone comes to the door, when it’s time to leave for school or work, or when dinner is ready. The system can be integrated with smart home-control technologies like Amazon’s Echo. There is also a two-way communication technology that can translate sign language into text for people who are not hearing impaired, a useful tool for helping caregivers and care subjects communicate.

Cognitive Challenges

Individuals with cognitive challenges and memory impairment sometimes have trouble taking care of themselves, forgetting to take medications or prepare meals. A program called Lively uses sensors to track the daily movements and behavior patterns of cognitively disabled individuals. Caregivers can log into a web page to track their care subject’s movements and activities, making sure he or she is sleeping and eating properly and performing other normal daily activities. Still more sophisticated Internet-based smart technologies allow wheelchair-bound individuals to interact with their surroundings in ways that wouldn’t be possible otherwise. Lights, blinds, thermostats, appliances, sprinklers, and even pet feeders can be controlled with a smartphone, as can door locks and home security systems.

Technology is helping improve the lives of people with many different disabilities. It’s also beneficial to caregivers who live on-site or provide care remotely, protecting loved ones who are highly vulnerable to accidents or mishaps caused by their disabilities. Communication is the key, and there are many apps and systems that can make it easier for individuals with visual and hearing impairments to communicate with their caregivers.


June Duncan is the primary caregiver to her 85-year-old mom and the co-creator of Rise Up for Caregivers, which offers support for family members and friends who have taken on the responsibility of caring for their loved ones.  She is passionate about helping and supporting other caregivers and is currently writing a book titled, The Complete Guide to Caregiving: A Daily Companion for New Senior Caregivers, due out in Winter 2018.

For more information and resources for caregivers, please visit www.alsa-stl.org.

 

Caregiver Confidential: “Who Lives, Who Dies, Who Tells Your Story?”

But when you’re gone, who remembers your name?

Who keeps your flame?

Hamilton, “Who Lives, Who Dies, Who Tells Your Story?”

I was fortunate to see Hamilton in Chicago in December. (I highly recommend going when it comes to St. Louis this spring.) One of the most moving musical numbers and a personal favorite of mine was the finale, “Who Lives, Who Dies, Who Tells Your Story?” In fact, I become teary-eyed every time I listen to the lyrics, because they are so on-point. I thought I finished telling my family’s journey with ALS, but after watching Hamilton, I realized that I had one final point to make.

In earlier posts, I related how my husband Brian learned that he had ALS and our family’s 5-year journey with the disease. What I failed to adequately convey, however, was that your loved one’s legacy should not be defined by ALS. It is easy for this to happen, because of the dramatic and heart-wrenching nature of the illness, and because for many of us, ALS leaves a searing and indelible memory. One must always remember that ALS is what your loved one unfortunately had and does not reflect or represent who he or she was. With that backdrop, I hope you will indulge me in telling you just a little more about Brian, unrelated to ALS:

I first met Brian in October 1967 on the last day of a high school youth group convention. I was from Joliet, and Brian was from Elgin, Illinois. A childhood friend originally from Joliet but living in Elgin said she knew this really cute, shy guy and wanted to introduce us. Brian and his best friend walked into the gym on the last day of the convention, and my friend Barb introduced us. Our conversation lasted only an hour or two before I boarded the bus to return to Joliet, but we clicked immediately. When I got home, I called my best friend and told her that I met the guy I was going to marry. It took almost 7 years for that to happen, but Brian and I were married on June 2, 1974. We were married for 36 years.

Brian and Idelle
Brian and Idelle, December 1970

Who was Brian? Brian loved sports and was a defensive lineman on his high school football team. His favorite baseball team was always the NY Yankees (Brian was born on Staten Island, NY), and he followed Ohio State football from his days growing up in Painesville, Ohio. His favorite college basketball team was the Kentucky Wildcats, which is the one sports team he followed religiously throughout his life. Brian shared his passion for the Wildcats first with his dad, who was a Kentucky alum, and later with our daughter Leah. His adopted St. Louis teams were the Cardinals and Rams, of which he enjoyed attending the occasional game.

Brian loved food, reading, music, travel (we took many wonderful vacations), and gardening, which he found relaxing and meditative. Every morning before work during the growing season, Brian would go outside to contemplate the plants in our front garden bed. Brian always loved nature and the outdoors. Growing up, Brian’s parents thought he would become a forest ranger, but instead he received bachelor’s degrees in environmental science and zoology.

Brian was a very thoughtful, introspective, and intellectual person. He was an extremely hard-working and meticulous medical malpractice defense attorney, who was dedicated to his clients. Brian was a good listener and nonjudgmental person, who cared deeply about people. Above all, Brian was a devoted father and husband to me and our daughter Leah.

This is my last post on our family’s experience (I promise!), and I will be blogging about other caregiving topics going forward. As a survivor, I feel it is incumbent on each of us to give voice to the voiceless, to tell our loved one’s story, and to keep the flame alive. I invite you to share your stories or experiences, anything you feel comfortable relating, 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: “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.

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.