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Overcoming Relationship Challenges
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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
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Overcoming Relationship Challenges
THIS BOOK WILL BENEFIT: Those seeking to or struggling to retain close connections with spouses / partners, children, caregivers, relatives, friends, co-workers and health care providers.
THIS BOOK INCLUDES:
● The Importance of Relationships For a Person With ALS
● Relationships Between a PALS And Their Spouse / Partner
● Relationships Between a PALS And Their Children
● Relationships Between a PALS and Their Caregiver
● Relationships Between a PALS & Relatives & Friends
● Relationships Between a PALS And Co-Workers
● Relationships Between a PALS And Health Care Providers
● Relationships Between a PALS And Their Spouse / Partner
● Relationships Between a PALS And Their Children
● Relationships Between a PALS and Their Caregiver
● Relationships Between a PALS & Relatives & Friends
● Relationships Between a PALS And Co-Workers
● Relationships Between a PALS And Health Care Providers
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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 12/11/22.
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 12/11/22.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
The Importance of Relationships For a Person With ALS
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ALS. Three Letters That Changed Our Lives FOREVER (Continued)
The insights shared by pALS & caregivers in this booklet is a result of “honest” self-reflection of real people who have been where you are and they are choosing to share these deeply personal thoughts in an effort to help others in their journey. This booklet may encourage some and displease others.
ALS. Three Letters That Changed Our Lives FOREVER
◼ When your spouse or partner is diagnosed with
ALS it can feel as though you’ve been robbed of the future you always envisioned together. So, adapt: you, your relationship and your shared dreams.
◼ This journey together can forge a deeper relationship than the two of you ever thought possible. You are pulling together with completely common objectives, similar to working together with the birth of your first child.
◼ Yes, things are going to be different now but satisfaction and happiness in your relationships are still achievable.
◼ All relationships take work and have a direct impact on a pALS well-being. The pALS and caregiver (the team) must guard against withdrawing into isolation by making a daily conscious effort to maintain their relationships. Focus on both building strong support systems and effectively leveraging networks already in place.
ALS it can feel as though you’ve been robbed of the future you always envisioned together. So, adapt: you, your relationship and your shared dreams.
◼ This journey together can forge a deeper relationship than the two of you ever thought possible. You are pulling together with completely common objectives, similar to working together with the birth of your first child.
◼ Yes, things are going to be different now but satisfaction and happiness in your relationships are still achievable.
◼ All relationships take work and have a direct impact on a pALS well-being. The pALS and caregiver (the team) must guard against withdrawing into isolation by making a daily conscious effort to maintain their relationships. Focus on both building strong support systems and effectively leveraging networks already in place.
◼ As a team, try not to focus on things outside of your control. Be thankful for what you have, especially those around you. Try never to show anger or bitterness around others, you don’t want to cause people to withdraw making things worse. If you stay positive and find humor in your day, you will find others are more comfortable around you and will be more willing to help. Any bitterness or anger should be reserved for the pALS & caregivers most private times. Work through this together with total honesty and complete love.
◼ We viewed the challenges as the “wonders we were experiencing together” and always tried to find the joy of overcoming the challenges as we did through our whole life … together.
◼ We all recognize that the challenges will continue to come. But with the essential relationships in place, pALS & their caregivers can face the future with confidence because they are not alone. There is an extraordinary team who will collaborate with them and help them navigate these difficulties.
◼ Fighting ALS can be a very lonely battle. That is why cultivating relationships is always important.
◼ We viewed the challenges as the “wonders we were experiencing together” and always tried to find the joy of overcoming the challenges as we did through our whole life … together.
◼ We all recognize that the challenges will continue to come. But with the essential relationships in place, pALS & their caregivers can face the future with confidence because they are not alone. There is an extraordinary team who will collaborate with them and help them navigate these difficulties.
◼ Fighting ALS can be a very lonely battle. That is why cultivating relationships is always important.
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ALS. Three Letters That Changed Our Lives FOREVER (Continued)
◼ As a team, try not to focus on things outside of your control. Be thankful for what you have, especially those around you. Try never to show anger or bitterness around others, you don’t want to cause people to withdraw making things worse. If you stay positive and find humor in your day, you will find others are more comfortable around you and will be more willing to help. Any bitterness or anger should be reserved for the pALS & caregivers most private times. Work through this together with total honesty and complete love.
◼ We viewed the challenges as the “wonders we were experiencing together” and always tried to find the joy of overcoming the challenges as we did through our whole life … together.
◼ We all recognize that the challenges will continue to come. But with the essential relationships in place, pALS & their caregivers can face the future with confidence because they are not alone. There is an extraordinary team who will collaborate with them and help them navigate these difficulties.
◼ Fighting ALS can be a very lonely battle. That is why cultivating relationships is always important.
◼ We viewed the challenges as the “wonders we were experiencing together” and always tried to find the joy of overcoming the challenges as we did through our whole life … together.
◼ We all recognize that the challenges will continue to come. But with the essential relationships in place, pALS & their caregivers can face the future with confidence because they are not alone. There is an extraordinary team who will collaborate with them and help them navigate these difficulties.
◼ Fighting ALS can be a very lonely battle. That is why cultivating relationships is always important.
Audio: The Importance of Relationships
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The Importance of Relationships For a Person With ALS
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Critical Truths To Remember And Reinforce (Continued)
Critical Truths To Remember And Reinforce
◼ We all started where you are now with the same uncertainties, inadequacies and fears. You will get through this. The strength will be there when you need it. Take it day by day or hour by hour. We did it and you can too.
◼ The pALS is still the same person they were before the diagnosis and subsequent disability. It is important to treat them that way and to make them feel “normal”.
◼ A person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for. Relationships that enable these priorities are essential for a pALS.
◼ Communication is the cornerstone of any relationship. Listening is the most important part of communication. Do Not let anyone, talk for the pALS, talk over the pALS, or Interrupt the pALS. This is disrespectful and sends a message to the pALS that the one thing they do have control over, their thoughts and ideas, aren’t that important or valued. Yes, it is going to take the longer for the pALS to communicate. Accept it. Sit there in silence and wait. You don’t have to “fill the silent void”. If you fail to give the pALS the time needed to communicate, they may stop trying all together.
◼ The pALS is still the same person they were before the diagnosis and subsequent disability. It is important to treat them that way and to make them feel “normal”.
◼ A person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for. Relationships that enable these priorities are essential for a pALS.
◼ Communication is the cornerstone of any relationship. Listening is the most important part of communication. Do Not let anyone, talk for the pALS, talk over the pALS, or Interrupt the pALS. This is disrespectful and sends a message to the pALS that the one thing they do have control over, their thoughts and ideas, aren’t that important or valued. Yes, it is going to take the longer for the pALS to communicate. Accept it. Sit there in silence and wait. You don’t have to “fill the silent void”. If you fail to give the pALS the time needed to communicate, they may stop trying all together.
◼ An ALS diagnosis and on-going health status is the pALS to discuss. Many want this to stay private. This must be respected by caregivers, family and friends. This is the pALS info to share not anyone else's.
◼ Don’t act like the pALS is “invisible” and talk about them while they are in the room. Hearing and thinking are two abilities a pALS retains and actually gets sharper / more refined as the disease progresses. The pALS should be included in all group conversation as an active participant. Talk directly to them.
◼ Hope is a powerful thing. It inspires us to do the impossible and helps us carry on during difficult times facing down impossible odds. A pALS must be around people that uplift and encourage them.
◼ Don’t act like the pALS is “invisible” and talk about them while they are in the room. Hearing and thinking are two abilities a pALS retains and actually gets sharper / more refined as the disease progresses. The pALS should be included in all group conversation as an active participant. Talk directly to them.
◼ Hope is a powerful thing. It inspires us to do the impossible and helps us carry on during difficult times facing down impossible odds. A pALS must be around people that uplift and encourage them.
◼ Powerfully impacting words to say to a pALS:
◼ Powerfully impacting words to say to your caregiver:
Audio: Each Day A Gift