Overcoming Toileting Challenges

Overcoming
Toileting Challenges

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

By ALS Caregivers for ALS Caregivers

Overview

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Introduction

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ALSCaregivers.org

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.

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

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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

To print the book, select this icon

3

ALSCaregivers.org

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.

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

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Requesting & Accepting Help With Toileting

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ALSCaregivers.org

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Transitioning to Toileting Assistance

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Transitioning to Toileting Assistance (Continued)

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◼ 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.

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Audio - Caregiver Perspective: Mastering toileting

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◼ 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.

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ALSCaregivers.org

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Transitioning to Toileting Assistance (Continued)

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◼ 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.

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Requesting & Accepting Help With Toileting
(Continued)

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ALSCaregivers.org

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.

◼ 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

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ALSCaregivers.org

Which Restroom To Use (Continued)

◼ 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.

BATHROOM SIGN.docx

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Getting Up From The Toilet

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ALSCaregivers.org

Leverage Portable Equipment Raise Toilet Height (Cont.)

Leverage Portable Equipment Raise Toilet Height

◼ Drop Arm Commode.

◼ Raised Toilet Seat

● A raised toilet seat is an inexpensive and portable solution for getting height and handles on a toilet.
● Pay attention to if the PALS has a round or oval toilet and get a seat that fits the toilet bowl shape.
● The earth throne toilet riser is another good toilet seat riser option with rear access to the pALS Bottom for cleaning.
● Some cons: It is harder for the pALS to clean themselves sitting on this. If you lean your pALS to dress them on the toilet, the riser may shift.

● If the bathroom is WAY TOO SMALL, leverage another private room (e.g. bedroom) to set up the commode using the container underneath.
● The drop arm commode chair is portable and the side arm drops down to support a sliding transfer.

◼ Leverage Portal Toilet Surround / Safety Frames

◼ Folding Steel / Bedside Commode

● This is a nice practical solution that provides a lot of flexibility (e.g. Guardian). If the container underneath the frame is removed, the frame can sit over the toilet making it easier to stand up. If the bathroom is WAY TOO SMALL, The caregiver can discretely leverage someone’s bedroom and set up the commode using the container underneath.

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ALSCaregivers.org

Leverage Portable Equipment Raise Toilet Height (Cont.)

◼ Drop Arm Commode.

● If the bathroom is WAY TOO SMALL, leverage another private room (e.g. bedroom) to set up the commode using the container underneath.
● The drop arm commode chair is portable and the side arm drops down to support a sliding transfer.

◼ Leverage Portal Toilet Surround / Safety Frames

● This provides a solid “frame” that can be used to more easily stand up from the sitting position. This is a good alternative when grab bars aren’t an option.
● The toilet frames are foldable so they are portable.
● If you are in a tight space, you can use one side of the toilet safety frame.

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Getting Up From The Toilet
(Continued)

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ALSCaregivers.org

Getting Help When You Need It

Independent Toileting Without Equipment

◼ People with ALS that find themselves unable to stand up from the toilet can try spreading their legs apart and placing their hands on the toilet bowl. Rock and lean forward (nose over toes) leveraging upper body strength to help rise up. If space exists, consider having the pALS sit sideways on the toilet to get more toilet space to push up on.

◼ Urinals are a convenient choice when using the toilet becomes more difficult and the only need is to urinate.

◼ Urinal bags (e.g. Cleanis Carebag) are a great alternative to urinals when traveling. The bag has an absorbent pad that soaks in the urine. When finished, just throw the bag in the trash.

◼ The person with ALS needs to start carrying a mobile phone or some type of alerting method so they can get help if they are "stuck on the toilet".
◼ Consider placing the mobile phone on a lanyard so the pALS can carry it around their neck.
◼ A “Quick Dial short cut icon” can easily be added to the home screen of your smart phone or watch to make it quite easy for the pALS to
get help.
◼ An alternative to mobile phones, there are 2 inexpensive caregiver alert
systems that are battery operated: Smart Caregiver wireless pager or Chtoocy.