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Overcoming Toileting 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
2
Introduction
3
Who We Are
Toileting Challenges
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.
THIS BOOK WILL BENEFIT: Those having weakness in 1 or more legs or 1 or more arms. Those who are wheelchair bound. Anyone that has any type of struggle or worry related to toileting or needs help with toileting
THIS BOOK INCLUDES:
● Requesting & Accepting Help Toileting
● Getting Up From a Toilet
● Transferring To The Toilet
● Toileting Chairs
● Toileting With Arm Weakness
● Bed Bound Toileting
● Catheters
● Bowel Training
● Extra Tips
● Traveling
● Home Renovations
● Getting Up From a Toilet
● Transferring To The Toilet
● Toileting Chairs
● Toileting With Arm Weakness
● Bed Bound Toileting
● Catheters
● Bowel Training
● Extra Tips
● Traveling
● Home Renovations
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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 3/20/24.
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 3/20/24.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
To print the book, select this icon
3
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 3/20/24.
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 3/20/24.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
4
Requesting & Accepting Help With Toileting
5
Transitioning to Toileting Assistance
Transitioning to Toileting Assistance (Continued)
◼ Going to the bathroom is a personal, private experience so when assistance is needed it can initially be embarrassing for both the pALS and the caregiver. Many pALS feel ashamed to appear so vulnerable in front of their family-based caregivers.
◼ For a non-partner family member, helping a pALS toilet can initially be awkward.
◼ Communication is key. It is crucial to have candid conversation with the pALS about their toileting needs so the caregiver can take proactive steps to get needed tools.
◼ One of the caregivers major functions is to make the PALS feel as normal as possible for as long as possible. It is critical to ensure the pALS feels no embarrassment or shame if they need help getting to and using the toilet.
◼ The caregiver should take time to listen during the toileting process allowing the pALS to make choices and remain in control.
◼ The assistance needed for toileting progresses over time. It is important to encourage and enable the pALS to do as much as possible for themselves.
◼ For a non-partner family member, helping a pALS toilet can initially be awkward.
◼ Communication is key. It is crucial to have candid conversation with the pALS about their toileting needs so the caregiver can take proactive steps to get needed tools.
◼ One of the caregivers major functions is to make the PALS feel as normal as possible for as long as possible. It is critical to ensure the pALS feels no embarrassment or shame if they need help getting to and using the toilet.
◼ The caregiver should take time to listen during the toileting process allowing the pALS to make choices and remain in control.
◼ The assistance needed for toileting progresses over time. It is important to encourage and enable the pALS to do as much as possible for themselves.
◼ The caregiver should, as seamlessly as possible, take over toileting functions as it becomes necessary with the objective of performing these functions the same way the PALS has done them in the past.
◼ Equipment can provide safer and easier alternatives to caregivers & PALS. Be proactive about identifying early on the need for equipment so the PALS can begin using it slowly when there isn’t full dependence. It also may take time to locate / obtain the equipment.
◼ It is critical that a trusted personal connection exists between the pALS and the provider assisting with toileting. Always be gentle and respectful telling the pALS what you are going to do step by step.
◼ Some pALS will reject all potential alternate caregivers brought in to relieve the primary caregiver due to toileting concerns. Discuss solutions that enable the pALS to retain their dignity. Many are open to professional (non family) caregivers providing toileting support once trust has been established between them.
◼ Leverage OT to train the caregiver on how to use the various equipment & to review how to help the PALS going to the toilet. Be sure to train with the equipment used in the home.
◼ Equipment can provide safer and easier alternatives to caregivers & PALS. Be proactive about identifying early on the need for equipment so the PALS can begin using it slowly when there isn’t full dependence. It also may take time to locate / obtain the equipment.
◼ It is critical that a trusted personal connection exists between the pALS and the provider assisting with toileting. Always be gentle and respectful telling the pALS what you are going to do step by step.
◼ Some pALS will reject all potential alternate caregivers brought in to relieve the primary caregiver due to toileting concerns. Discuss solutions that enable the pALS to retain their dignity. Many are open to professional (non family) caregivers providing toileting support once trust has been established between them.
◼ Leverage OT to train the caregiver on how to use the various equipment & to review how to help the PALS going to the toilet. Be sure to train with the equipment used in the home.
Audio - Caregiver Perspective: Mastering toileting
5
Transitioning to Toileting Assistance (Continued)
◼ The caregiver should, as seamlessly as possible, take over toileting functions as it becomes necessary with the objective of performing these functions the same way the PALS has done them in the past.
◼ Equipment can provide safer and easier alternatives to caregivers & PALS. Be proactive about identifying early on the need for equipment so the PALS can begin using it slowly when there isn’t full dependence. It also may take time to locate / obtain the equipment.
◼ It is critical that a trusted personal connection exists between the pALS and the provider assisting with toileting. Always be gentle and respectful telling the pALS what you are going to do step by step.
◼ Some pALS will reject all potential alternate caregivers brought in to relieve the primary caregiver due to toileting concerns. Discuss solutions that enable the pALS to retain their dignity. Many are open to professional (non family) caregivers providing toileting support once trust has been established between them.
◼ Leverage OT to train the caregiver on how to use the various equipment & to review how to help the PALS going to the toilet. Be sure to train with the equipment used in the home.
◼ Equipment can provide safer and easier alternatives to caregivers & PALS. Be proactive about identifying early on the need for equipment so the PALS can begin using it slowly when there isn’t full dependence. It also may take time to locate / obtain the equipment.
◼ It is critical that a trusted personal connection exists between the pALS and the provider assisting with toileting. Always be gentle and respectful telling the pALS what you are going to do step by step.
◼ Some pALS will reject all potential alternate caregivers brought in to relieve the primary caregiver due to toileting concerns. Discuss solutions that enable the pALS to retain their dignity. Many are open to professional (non family) caregivers providing toileting support once trust has been established between them.
◼ Leverage OT to train the caregiver on how to use the various equipment & to review how to help the PALS going to the toilet. Be sure to train with the equipment used in the home.
6
Requesting & Accepting Help With Toileting
(Continued)
(Continued)
7
Which Restroom To Use (Continued)
Which Restroom To Use
◼ In a perfect world you only need to use the toilet at home. The next ideal condition would be that you only need to use the toilet in a place that has “family” restrooms. But we don’t live in a perfect world & Murphy’s Law states you will need to use a public restroom when there is only a womens or a mens choice.
◼ Keep in mind, this situation is awkward for everyone when the opposite-sex needs to enter a restroom. Empathy and humor goes a long way. Crack the door and announce “opposite sex caretaker coming in” then give a couple of minutes before entering. Some people place a placard on the door “opposite sex in the restroom” or have someone “stand guard” at the door.
◼ If a PALS goes into a restroom independently, they should have a cell phone with them to request help if needed. The caregiver should stand by and put them on the clock. If more than their “normal” time has elapsed you can ask someone going into the restroom to check on them, ask a worker to check on them or just go in yourself.
◼ Keep in mind, this situation is awkward for everyone when the opposite-sex needs to enter a restroom. Empathy and humor goes a long way. Crack the door and announce “opposite sex caretaker coming in” then give a couple of minutes before entering. Some people place a placard on the door “opposite sex in the restroom” or have someone “stand guard” at the door.
◼ If a PALS goes into a restroom independently, they should have a cell phone with them to request help if needed. The caregiver should stand by and put them on the clock. If more than their “normal” time has elapsed you can ask someone going into the restroom to check on them, ask a worker to check on them or just go in yourself.
◼ Order a sign from the ALS Publications Portal or create your own custom sign by using the peel and stick display pockets then slide your message into the pocket. This can be kept in a wheelchair bag or any type of "out for the day" bag for handy access. Just pull it out and slap it onto the door.
Audio - Caregiver Perspective: Which restroom