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Overcoming Bathing 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 Caregiversfor ALS Caregivers
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Overview
2
Introduction
3
Who We Are
Bathing 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 bathing or needs help with bathing
The Purpose of This Book
THIS BOOK INCLUDES:
● Requesting & Accepting Help With Bathing
● Equipment
● Transferring to the Bathtub / Shower
● Bathing Assistance
● Bathing with Trachs, Ports, PICCS or Pegs
● Help with Dressing
● Personal Hygiene
● Equipment
● Transferring to the Bathtub / Shower
● Bathing Assistance
● Bathing with Trachs, Ports, PICCS or Pegs
● Help with Dressing
● Personal Hygiene
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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 everyday 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. Published 11/24/23.
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 everyday 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. Published 11/24/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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 everyday 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. Published 11/24/23.
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 everyday 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. Published 11/24/23.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
4
Requesting & Accepting Help With Bathing
5
Emotional Readiness: The Challenges
Emotional Readiness: The Truth
◼ Many pALS delay talking about bathing challenges or fears of falling in the bathroom. One reason for this delay is often because it is a milestone event in their mind representing the loss of independence, dignity, and control.
◼ PALS who need assistance with bathing often find the activity to be both physically and emotionally demanding, as do their caregivers.
◼ Because bathing is a private activity, pALS typically try to self-manage for as long as possible and avoid seeking help. They may feel ashamed and / or angry about not being able to care for themselves.
◼ For most all of us, being naked in front of a stranger (e.g. a paid personal care assistant) not to mention a non-partner family member would be incredibly embarrassing and humiliating. It takes time and effort by everyone involved to build the trust needed to transition the pALS from feeling uncomfortable and vulnerable to safe and comfortable.
◼ For a non-partner family member, helping a pALS bathe can initially be awkward.
◼ Helping someone bathe can be one of the more demanding activities a caregiver does especially as the pALS loses core strength and their ability to assist.
◼ PALS who need assistance with bathing often find the activity to be both physically and emotionally demanding, as do their caregivers.
◼ Because bathing is a private activity, pALS typically try to self-manage for as long as possible and avoid seeking help. They may feel ashamed and / or angry about not being able to care for themselves.
◼ For most all of us, being naked in front of a stranger (e.g. a paid personal care assistant) not to mention a non-partner family member would be incredibly embarrassing and humiliating. It takes time and effort by everyone involved to build the trust needed to transition the pALS from feeling uncomfortable and vulnerable to safe and comfortable.
◼ For a non-partner family member, helping a pALS bathe can initially be awkward.
◼ Helping someone bathe can be one of the more demanding activities a caregiver does especially as the pALS loses core strength and their ability to assist.
Audio - Caregiver Perspective: Stuck in the tub
◼ If you notice a pALS is having hygiene issues (body odor, greasy hair, bad breath, dirty nails, etc.) approach the pALS with empathy and respect. You MUST have an open and candid conversation about your concerns. Identify the challenges they are facing and, together, come up with a plan to overcome them.
◼ Hygiene issues affect the health, comfort and self-esteem of the pALS. Bathing once or twice a week helps a pALS feel clean and provides a sense of normalcy. When a pALS feels good about how they look, it builds confidence.
◼ Patience is key. Schedule in extra time. It will take longer and shouldn't be rushed. This should be a pleasant / relaxing time for the pALS that they look forward to.
◼ The level of assistance required with personal care progresses over time. It is important to encourage and enable the pALS to do as much as possible themselves.
◼ It is critical that a trusted personal connection exists between the pALS and the provider assisting with personal care. Always be gentle and respectful telling the pALS what you are going to do step by step. Distract the pALS by talking about something else while bathing.
◼ Referring to bath time as spa time, adding music, dimmed lights, pre-warmed towel, and candle fragrance goes a long way at easing pALS anxiety.
◼ Hygiene issues affect the health, comfort and self-esteem of the pALS. Bathing once or twice a week helps a pALS feel clean and provides a sense of normalcy. When a pALS feels good about how they look, it builds confidence.
◼ Patience is key. Schedule in extra time. It will take longer and shouldn't be rushed. This should be a pleasant / relaxing time for the pALS that they look forward to.
◼ The level of assistance required with personal care progresses over time. It is important to encourage and enable the pALS to do as much as possible themselves.
◼ It is critical that a trusted personal connection exists between the pALS and the provider assisting with personal care. Always be gentle and respectful telling the pALS what you are going to do step by step. Distract the pALS by talking about something else while bathing.
◼ Referring to bath time as spa time, adding music, dimmed lights, pre-warmed towel, and candle fragrance goes a long way at easing pALS anxiety.
5
Emotional Readiness: The Truth
◼ If you notice a pALS is having hygiene issues (body odor, greasy hair, bad breath, dirty nails, etc.) approach the pALS with empathy and respect. You MUST have an open and candid conversation about your concerns. Identify the challenges they are facing and, together, come up with a plan to overcome them.
◼ Hygiene issues affect the health, comfort and self-esteem of the pALS. Bathing once or twice a week helps a pALS feel clean and provides a sense of normalcy. When a pALS feels good about how they look, it builds confidence.
◼ Patience is key. Schedule in extra time. It will take longer and shouldn't be rushed. This should be a pleasant / relaxing time for the pALS that they look forward to.
◼ The level of assistance required with personal care progresses over time. It is important to encourage and enable the pALS to do as much as possible themselves.
◼ It is critical that a trusted personal connection exists between the pALS and the provider assisting with personal care. Always be gentle and respectful telling the pALS what you are going to do step by step. Distract the pALS by talking about something else while bathing.
◼ Referring to bath time as spa time, adding music, dimmed lights, pre-warmed towel, and candle fragrance goes a long way at easing pALS anxiety.
◼ Hygiene issues affect the health, comfort and self-esteem of the pALS. Bathing once or twice a week helps a pALS feel clean and provides a sense of normalcy. When a pALS feels good about how they look, it builds confidence.
◼ Patience is key. Schedule in extra time. It will take longer and shouldn't be rushed. This should be a pleasant / relaxing time for the pALS that they look forward to.
◼ The level of assistance required with personal care progresses over time. It is important to encourage and enable the pALS to do as much as possible themselves.
◼ It is critical that a trusted personal connection exists between the pALS and the provider assisting with personal care. Always be gentle and respectful telling the pALS what you are going to do step by step. Distract the pALS by talking about something else while bathing.
◼ Referring to bath time as spa time, adding music, dimmed lights, pre-warmed towel, and candle fragrance goes a long way at easing pALS anxiety.
6
Equipment
7
Precautions Are Key
◼ Grab bars are essential. A Lot of them. By the shower, tub, toilet, etc. You really can’t have too many.
◼ The bathroom is the most dangerous room in the home. Over 25% of adults injure themselves in the bathroom. A great proactive habit is for every pALS to leverage a shower seat. This will help reduce the risk of falls while taking a shower and also make the bathing experience less fatiguing.
◼ Extreme caution needs to be used in the bathroom. The floors are “slippery when wet”, the space is small and everything is hard. Many PALS falls occur in the bathroom.
◼ Bath mats should prevent falls on the slick surface but can bunch up and become tripping hazards. Consider non-slip decals or a non-slip safety mat.
◼ The pALS who can still walk should adhere to the "3 points of contact" safety rule. This means that either 2 hands and 1 foot must be on something stable or 2 feet and 1 hand must be on something stable when getting in and out of the shower/tub as well as while they are bathing.
This simple safety measure significantly reduces falls for pALS.
◼ Extreme caution needs to be used in the bathroom. The floors are “slippery when wet”, the space is small and everything is hard. Many PALS falls occur in the bathroom.
◼ Bath mats should prevent falls on the slick surface but can bunch up and become tripping hazards. Consider non-slip decals or a non-slip safety mat.
◼ The pALS who can still walk should adhere to the "3 points of contact" safety rule. This means that either 2 hands and 1 foot must be on something stable or 2 feet and 1 hand must be on something stable when getting in and out of the shower/tub as well as while they are bathing.
This simple safety measure significantly reduces falls for pALS.
Audio - Caregiver Perspective: Assistance with bathing
◼ Grab bars should be positioned based on the specific needs of the pALS. When marking where the grab bars will be located, the pALS should be closely monitored to identify exactly where the grab bars should be positioned.
◼ Grab bars are available in a variety of circumferences. Pick a width that best fits the hands of the pALS. They are available in a variety of finishes. Many pALS like the rougher brushed finish as it reduces possible hand slippage.
◼ Inexpensive Grab bars can be screwed onto tubs.
◼ Grab bars must securely mounted into a stud in the wall. If there is no stud available where the wall is to go, leverage a WingIts grab bar fastener.
◼ Suction Adhered Grab bars are not reliable and can fall off. This can be used as a portable solution when traveling or a temporary solution while awaiting grab bar installation.
◼ Grab bars are available in a variety of circumferences. Pick a width that best fits the hands of the pALS. They are available in a variety of finishes. Many pALS like the rougher brushed finish as it reduces possible hand slippage.
◼ Inexpensive Grab bars can be screwed onto tubs.
◼ Grab bars must securely mounted into a stud in the wall. If there is no stud available where the wall is to go, leverage a WingIts grab bar fastener.
◼ Suction Adhered Grab bars are not reliable and can fall off. This can be used as a portable solution when traveling or a temporary solution while awaiting grab bar installation.