Journey's End

Practical Knowledge Sharing for Overcoming
the Daily Challenges of Living with ALS

By ALS Caregivers for ALS Caregivers

Overview

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ALSCaregivers.org

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Introduction

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Journey's End

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THIS BOOK WILL BENEFIT: Those preparing for the end stages of ALS and beyond.

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THIS BOOK INCLUDES:

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● 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

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Press the 'Home' button on any page to come back here

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To view the video in full-size, click on the video and select this icon. Allow 30 seconds for the video to load

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To print the book, select this icon

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ALSCaregivers.org

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Who We Are

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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.

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The Purpose of This Book

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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

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Pre-Planning

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ALSCaregivers.org

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.

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Audio: Example Message

Video: pALS Perspective

Audio - Caregiver Perspective: Preplanning

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ALSCaregivers.org

Pre-Planning (Continued)

Video: Creating a Video Legacy

Video: pALS Perspective

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Pre-Planning (Continued)

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ALSCaregivers.org

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 pALS have 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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ALSCaregivers.org

Collaborating on Your Legacy (Continued)

◼ 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: Caregiver Perspective

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Pre-Planning (Continued)

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ALSCaregivers.org

Arrangements (Continued)

As a person with ALS, You have an opportunity to live life intentionally. You can make sure the people around you know how much you care about them and you can help prepare your family for when you are no longer here.

Arrangements

◼ Pre-planned funerals (funeral home, church, cemetery, grave monument, flowers, etc.) & wills take a huge emotional burden from the caregiver.

◼ The person with ALS should collaborate on celebration of life desires with the caregiver. This act of love will make handling your loss easier. We found pre-planning arrangements early in the diagnosis and getting it behind us was easier than waiting.

◼ Discuss anything specific to be included in the celebration of life that is meaningful and representative of your personality (e.g. tractor, sports car to lead the procession, military salute, dove release, bag piper, etc.).

◼ Select pictures that are important to be shared as a display or video clip. Select a photo that you would want in an obituary or on a tribute card.

◼ Identify charities or other entities that any monetary tributes should be directed toward and why they are important to you.

◼ Discuss what should be posted in the newspaper and social media.

◼ Ensure someone knows where keys are kept, combinations to safes, and logins/passwords to online apps.

◼ Identify any spiritual readings or poems you would like shared and why.

◼ Many pALS completely plan their celebration of life infused with humor and love.