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

 

Wisdom from Morrie

Morrie Schwartz, a professor emeritus of sociology at Brandeis University, was diagnosed with ALS in the summer of 1994 and passed away in November 1995. He devoted the last year of his life to using his illness to teach others about living and dying. He was an inspiration to friends, students and colleagues—young and old—on dying with dignity. He wrote 75 aphorisms that he called “Reflections on Maintaining One’s Composure While Living With a Fatal Illness”. These aphorisms are the basis of his book,  Letting Go (later republished as Morrie: In His Own Words).

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  • Be clear about what you need and want
  • Ask for it
  • Persist in trying to get it
  • If you don’t get it, know when to give up trying and accept the loss
  • Know you can experience more freedom to be who you really are and want to be because you now have nothing to lose
  • Learn how to combine detachment with involvement, caring with disease, despair with hope, and life with death
  • Let others’ affection, love, concern, interest, admiration, and respect be enough to keep you composed
  • Be patient with and accept your and others’ shortcomings and limitations— again and again and again
  • When you are utterly frustrated and angry, don’t be afraid to express anger or to curse silently, under your breath or out loud if the situation permits. You don’t have to be nice all the time and get people to like you and want to be with you—just most of the time
  • If you need to rail against your fate, do so while you also try to use your situation to enhance and transcend yourself and achieve a higher level of functioning, whatever that may be
  • If you can’t have large victories or achievements, be grateful and celebrate the small ones. Many small ones may add up to a large one
  • Watch for and enhance that which motivates you to be composed and involved
  • Reduce your fear of death
  • Keep your heart open for as long as you can, as wide as you can, for others and especially for yourself. Be generous, decent, and welcoming
  • Be kind and loving to yourself. Befriend yourself. Be compassionate to yourself. Be gentle towards yourself. Do not put others down or criticize yourself continuously
  • Friends and family may see you as less incapacitated than you are because they want you to be “better”. They have this need because they care about you. Accept this, while trying to convey your reality without imposing it on them
  • Whenever a lessening of a physical power occurs, it will always feel to soon. Expect this reaction, and perhaps by preparing for it mentally, you can soften its impact
  • Resist the temptation to think of yourself as useless. It will only lead to depression. Find your own ways of being and feeling useful
  • At some point, be prepared to deal with profound contradictory feeling—for example, wanting to live and wanting to die, loving others and hating them
  • Watch out for emotional, spiritual, or behavioral regression when you are tired, sleepless, or anxious. Try to find ways to avoid that state or get yourself out of it
  • Be aware that you are living in the shadow of increasing dysfunction, discomfort, dependency, and death. Come to terms with this shadow in whatever way you can
  • Allow yourself to be admired— to be an inspiration to others for your behavior, attitudes, and spirit
  • Find a time of the day to face fully your dread, horror, anxiety, fear, rage, and anguish in regard to past, current, and future losses and dysfunctions. Weep and grieve deeply at this time. Once you have honored these feelings, be done with them and go back to your involving life. You may find that you are strengthened by your tears
  • Maintain necessary illusions, but not completely unrealistic ones. For example, to hope that my ALS will reach a plateau or move slowly is realistic, but to expect to be cured is not. Be hopeful, but not too foolishly hopeful

Want some “more-rie”? The New Jewish Theater is starting its 2017-2018 season with a production of “Tuesdays with Morrie”, which has been adapted from Mitch Albom’s best-selling book about his relationship with his professor and mentor, Morrie Schwartz, at the end of his life.  If you’re interested, you can buy tickets here or by calling 314-442-3283.

Tuesdays with Morrie FB Post

Bridge the Silence

Gina Baldwin is a licensed Speech Pathologist with over 30 years of experience in the field. She holds a Bachelor of Science degree in Speech Language Pathology and a Master of Science degree in Speech Language Pathology from Southern Illinois University at Edwardsville, IL. Strongly motivated to make a difference in people’s lives, she currently devotes the majority of her professional time to providing speech therapy services in healthcare facilities and in home health environments. We are excited to welcome her as a guest blogger to ALS Connect.

As a Speech Language Pathologist, I have experienced the joy of my patients’ successes as well as my share of frustration that I could not help them achieve more. I recognized a major gap in communication when I was providing speech therapy to a 68 year-old speech-impaired patient. She and her family became frustrated while trying to communicate using Skype. My patient tried to position her picture communication board toward the camera and pointed to pictures. Her family could not see what she was pointing to and there was silence. The picture communication board did not have speech output. I stood there and watched my patient become annoyed and I experienced it too.

Augmentative and Alternative Communication (AAC) is a solution to replace and/or assist in everyday communication situations. My patient and I discussed AAC, (also known as speech generating devices), but after many trials of different systems, we were back to square one; the picture communication board. We found that the AAC systems available did not meet her needs. They were too complicated for her to use and very expensive. In addition, she did not like the cartoon characters and stick figures that were used to depict a want, need or category.

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One type of picture communication board

 

Frustrated that there wasn’t anything currently available that was appropriate for her situation, I set out to create something myself. I designed and created APP2Speak™ (APP2Speak.com) an inexpensive, easy-to-use AAC software application for the iPad. Users can customize pages and personalize lifestyle information by using their own pictures, adding words, phrases and select text-to-speech or record their own voice.

App2Speak
App2Speak

Most people with ALS experience difficulty with speech and movement during the course of their illness. Some individuals will completely lose their ability to speak and to use their hands. The inability to speak is frustrating, emotionally devastating and one of the most challenging obstacles to manage successfully. Technology can be used to help a person with ALS to communicate so they can be an active participant in their family and community life, become more independent, and make medical decisions. These people must completely rely on another method to make all of their ideas, wants, or needs known.

Several months ago I had the privilege of meeting a gentleman who had a great sense of humor. His wife helped him set up the custom pages on APP2Speak™. They took a picture of his mustache and recorded speech output saying, “Can you help me shave?” Another custom picture was a personal mug filled with beer and recorded speech output saying, “beer me”.  Customization is a means to personalize your expression, to show your personality and to connect with family and friends. The gift of speech is worth millions of conversations.

A few weeks ago I had the pleasure of having lunch with a friend I met at the ALS walk last year. I wanted to experience her voiceless world with her! We communicated using my voice (at times) and 2 AAC systems: APP2Speak™ and Talk to Me Technologies device.

Talk to Me Technologies is a computer with Windows platform with speech output software. This AAC system allows my friend to accomplish many things, for example, email, Facebook, internet searches and communication. She also has an iPad with APP2Speak™ software application. She uses APP2Speak™ for communicating in situations when she doesn’t need to have a computer. It’s easy to use and she particularly likes the text-to- speech page. (She was the inspiration for me to add this feature).

Communication is a means to express what we know. It is integral in all facets of life, especially the enjoyment of our relationships with loved ones, our friends and in our participation in everyday activities within our home and community.

For more information on Assistive Technology and Augmentative/Alternative Communications Devices, please click here.  You can learn more about APP2Speak™ by visiting http://www.app2speak.com/index.html.

Looking Back at August

As we officially enter into September, we can’t help but look back at this month and compare it to August 2014.  This August was a busy month filled with events, not unlike past Augusts.  While our social media pages were less inundated with videos of people taking the challenge, many families are still feeling the impact of this viral sensation.  We continue to hear stories of what this means to people even three years later.  Sabrina Jones is one such person and here she reflects on where she was in August 2014 and the journey her family has been on since. 

Looking back at August 2014… One of my friends challenged me to do the Ice bucket Challenge.  I’m not sure if they’re really a friend, though, since I was about 36 weeks pregnant!  But, like a champ, I rocked the Challenge–not just once, but twice since my husband “forgot” to record the first bucket!  At that time, I had no real idea what ALS was or why it mattered.  “The Challenge” was something fun my friends challenged me to do, and I couldn’t wait to donate and challenge others!  To be honest, looking back on that time in life, it was nice having no clue of what ALS is and does.

Hamlin IBC
Screenshots from Sabrina Jones and Lester Hamlin’s Ice Bucket Challenge videos in 2014

This past September 2016, my mother, Pattie Hamlin, was diagnosed with ALS after having some symptoms for about a year.  This was a terrifying time for my family.  We were all now forced to learn and know what ALS is.

Hamlin Family

After about a month or so of living in what felt like a deep dark lonely hole, my mother decided to reach out and be an advocate for ALS.  Her first order of business was to help advocate for other ALS patients by encouraging others in our state to write to their congressman.  My mother went above and beyond and collected about 3,000 signed letters!!  She’s also helped get votes out so our Nokomis School District would win a Holiday Mannequin Challenge that got us $50,000 from GivIt that was split between ALS research and our hometown school district, Nokomis School District.  My dad, Lester Hamlin, and mother also went to Washington, DC to again advocate for ALS patients’ needs.  After that, they came home to lead about 150 family members, friends, and coworkers in the Walk to Defeat ALS in Springfield, IL.  Our amazing team, Pattie’s Posse, was able to raise and donate $39,735.  I’m sure I’ve left something out because it’s been a whirlwind!

Patties Posse
Pattie’s Posse at the 2017 Walk to Defeat ALS in Springfield, IL

Thanks to all the hard work of the many people who participated in the Ice Bucket Challenge and who also continue to advocate for ALS patients, a new drug is being released this month for ALS patients.  This isn’t a cure, but it’s giving us a small glimpse of light at the end of the tunnel–to someday conquer this disease!

The diagnosis of ALS isn’t something we’d ever imagined.  However, when life gave my mom lemons… she has turned around and made the best lemonade she knows how!