The word legacy can mean different things to different people. Some people think of it as leaving financial support for family members, organizations, or institutions. Here we are talking about leaving an emotional legacy for loved ones.
This can take many different forms—it can be as simple as writing a letter to your child or as involved as researching and sharing your family history.
An ALS diagnosis can create a lot of emotional uncertainty. Leaving a legacy can be a way to organize your emotions and share them in a meaningful way.
This can take many different forms—it can be as simple as writing a letter to your child or as involved as researching and sharing your family history.
An ALS diagnosis can create a lot of emotional uncertainty. Leaving a legacy can be a way to organize your emotions and share them in a meaningful way.
Why leave a legacy?
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Leaving a legacy can be a way to connect with loved ones and have a profound impact on recipients.
Some people may want to leave a legacy to share and preserve their thoughts, advice, stories, family history, and more for loved ones and future generations. Others may want to craft individual messages of support and guidance to help people cope after they are gone. |
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The process of creating a legacy can be fulfilling. It can provide peace of mind and a sense of purpose. Through collaboration, it can be a shared project that connects you with loved ones now. It can also be a source of comfort for your loved ones in the future.
“As a former caregiver to my husband, I now find myself wishing for one more conversation with him—to hear his voice and see that beautiful smile and twinkle in his eyes. I wish we had taken the time during his ALS journey to record his thoughts and feelings about our lives, our kids' future, and the grandchildren we anticipated having.
While I know the ALS journey is time-consuming and all-encompassing, if there was one thing I would encourage people living with ALS to do, it's to create a legacy.
Record not only the memories of your life, but the things you want your loved ones to know in the future, like a birthday message to your children, an anniversary video for your spouse, or even a welcome-to-the-world video for the new lives that come into your family. It's a priceless gift you can give.”
- Jill Brattain, former ALS caregiver
While I know the ALS journey is time-consuming and all-encompassing, if there was one thing I would encourage people living with ALS to do, it's to create a legacy.
Record not only the memories of your life, but the things you want your loved ones to know in the future, like a birthday message to your children, an anniversary video for your spouse, or even a welcome-to-the-world video for the new lives that come into your family. It's a priceless gift you can give.”
- Jill Brattain, former ALS caregiver
What might your legacy look like?
There is no right or wrong way to create a legacy. You can do whatever feels right and natural to you. Leaving a legacy does not have to be a big, daunting project like writing a book. And it does not have to cost any money. You can engage family and friends to help you by providing suggestions.
Your legacy could be low-tech, high-tech, or anywhere in between.
Here are just a few ideas:
Your legacy could be low-tech, high-tech, or anywhere in between.
Here are just a few ideas:
- Handwrite or type letters to individuals or groups of people
- Record your daily or weekly thoughts digitally or on paper
- Organize physical photos with notes and labels
- Answer questions that loved ones pose
- Make audio and/or video recordings on your phone, tablet, or computer
- Organize and share personal and family recipes
- Record yourself reading a recordable story book for children or grandchildren
- Research your family history and share a detailed family tree
- Write a book or memoir
- Write a letter or record a video for your celebration of life
- Use a digital legacy service that records, organizes, and shares your messages
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Soalma Legacy AppSoalma is an easy-to-use app and platform that helps you share important life legacies in digital format with those you love. Learn more
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Getting Started
If you are interested in creating and leaving a legacy, the most important thing is to get started. You do not have to take on a huge project—and what you make does not have to be perfect. It can be anything that would be meaningful to you and/or loved ones.
To define your project, it might be helpful to start by asking yourself the following questions:
To define your project, it might be helpful to start by asking yourself the following questions:
- Who is it for?
- What type of legacy do I want to create?
- What type of legacy will be most meaningful for loved ones?
- Will I need assistance or tech support from anyone?
- Who might be willing to help?
- What are some important things I want to share?
Legacy Ideas
- Life Lessons and Values: Share the core values, beliefs, and life lessons that have guided you. This could include stories of resilience, forgiveness, kindness, and the lessons you hope your loved ones and descendants will carry forward.
- Cherished Memories Together: Recall special moments with each family member or friend individually. Describe specific memories or experiences that have made a lasting impact on your life and express what each person means to you.
- Hopes and Dreams for the Future: Share your hopes for your loved ones' lives—aspirations, encouragement for their dreams, and your wishes for their happiness and growth.
- Words of Wisdom and Advice on Making a Hard Decision: Loved ones value your advice to make a tough decision due to trust and care. Your guidance provides perspective, support, and a clearer path, easing their dilemma.
- Messages of Love and Gratitude: Express your love, appreciation, and gratitude to each loved one individually. This legacy can provide ongoing comfort and a reminder of your enduring love, giving your loved ones strength and connection over time.
Source: www.soalma.com
“After my aunt was diagnosed with ALS, the two of us began documenting and piecing together our family history, something that had long been a common interest. We went through old boxes of photos and made new discoveries on a genealogy website. It was a fun project and our entire family appreciated learning more about our history."
- David Meissner
- David Meissner
You could get your ideas flowing by taking notes, brainstorming, and discussing possibilities with others. Try to start the process earlier in your disease progression, if possible, when you have more energy and physical abilities.
It’s a good idea to designate a “keeper” of your legacy and establish a clear plan for how and when your legacy items will be distributed.
Remember that nothing has to be perfect. Even small things that you share can have immense meaning to those who love you.
It’s a good idea to designate a “keeper” of your legacy and establish a clear plan for how and when your legacy items will be distributed.
Remember that nothing has to be perfect. Even small things that you share can have immense meaning to those who love you.
Sharing Your Medical Wishes
Another gift you can leave your loved ones is providing clarity about your medical wishes in case you ever experience a medical emergency or become unable to make decisions. You can do this ahead of time by filling out advance directives.
Resources
- Recordable Story Books for Children - Record yourself reading these books and then gift them to young children or grandchildren
- Soalma - Use this app and digital platform to share memories, advice, stories, and more
- Ancestry - Research, organize, and share your family history through this powerful online platform
- How to Leave a Legacy - Read this philosophical article about the meaning of legacy and different ways you can leave one
- Five Wishes - Organize your personal, spiritual, medical, and legal wishes for loved ones on paper or in digital form
- Death and Dying - Find links to handouts on topics like How to Write a Memoir and a link to the book Achieving a Good Death
- Death Over Dinner - Learn about one way to broach and discuss death with your loved ones
We developed this page in collaboration with former ALS caregiver Jill Brattain, ALS United Rocky Mountain Care Coordinator Mary King, and Soalma CEO Ignacio Moreno.
