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Practical Knowledge Sharing for Overcoming the Daily Challenges of Living with ALS
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By St. Louis ALS Association Caregivers for ALS Caregivers
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Overview
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Introduction
Journey's End
THIS BOOK WILL BENEFIT: Those preparing for the end stages of ALS and beyond.
THIS BOOK INCLUDES:
● Pre-planning
● Legal Documents
● The Right to Choose
● Toward The End Of The Journey
● The End Of The Journey
● Post Funeral Check List Of Steps To Consider
● Legal Documents
● The Right to Choose
● Toward The End Of The Journey
● The End Of The Journey
● Post Funeral Check List Of Steps To Consider
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Who We Are
We are not experts. We are not vendors.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.
The Purpose of This Book
What This Is Not: This is not a therapy or group counseling session. This is not a vendor sales pitch or health care experts providing “book based” advice.
What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 8/13/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 8/13/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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Pre-Planning
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Collaborating on Your Legacy
Pre-Planning (Continued)
Video: Creating a Video Legacy
◼ A pALS must consider what they really want someone to know or key messages to leave behind. They should be proactive about writing or recording messages while their voice is still strong. These messages could either be delivered to a specific receiver privately after you are gone or used during a celebration of life. Examples of a leave behind letter & an audio message that can be emailed out by your caregiver to the addressee are below:
◼ For personal items and memorabilia, the pALS should make clear who they want to have what and consider gifting those items / keepsakes. One of the most rewarding acts a pALS can do is present items personally to the recipient. This is a special time surround by love.
◼ Be intentional about getting pictures with those you love leaving with them visual reminders of your times together.
◼ For personal items and memorabilia, the pALS should make clear who they want to have what and consider gifting those items / keepsakes. One of the most rewarding acts a pALS can do is present items personally to the recipient. This is a special time surround by love.
◼ Be intentional about getting pictures with those you love leaving with them visual reminders of your times together.
Audio: Example Message
Video: pALS Perspective
Audio - Caregiver Perspective: Preplanning
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Pre-Planning (Continued)
Video: Creating a Video Legacy
Video: pALS Perspective
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Pre-Planning (Continued)
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Collaborating on Your Legacy (Continued)
Collaborating on Your Legacy (Continued)
◼ Don't just think of the pALS legacy in terms of money or property that are getting passed on to others. The most valuable legacy a pALS can share are their values, beliefs and attitudes because they can help guide the lives of those left behind. Determine how best to capture these aspects of who you are. (e.g. a private journal, video recording, audio recording, etc).
◼ Some pALShave used tools like gonenotgone to set up messages to loved ones on anniversaries after the PALS passes. Includes photo's, audio, or video so no-one has to think, "I wish I could here Dad's voice one more time".
◼ Some pALShave used tools like gonenotgone to set up messages to loved ones on anniversaries after the PALS passes. Includes photo's, audio, or video so no-one has to think, "I wish I could here Dad's voice one more time".
◼ Some pALS make hand castings or capture finger prints for keepsakes. Some make 3d photos of treasured moments. Others create DNA collection samples (e.g. hair follicles) for possible future use.
◼ The personal conversations can be very important to a pALS. Many feel a shared fulfillment and joy spending one on one time sharing what is on their heart with their close friends and family.
Video: Michael West: Wonderful Life
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