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Taking Care of The Caregiver(s)
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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
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Introduction
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Taking Care Of The Caregiver(s)
THIS BOOK WILL BENEFIT: Anyone living with ALS who has a caregiver or is a caregiver of someone living with ALS
THIS BOOK INCLUDES:
● Keeping The Caregiver Healthy
● Dont Fight The Battle Alone
● Knowledge Is Power
● Making The Most Of Together Time
● Extra Tips
● Dont Fight The Battle Alone
● Knowledge Is Power
● Making The Most Of Together Time
● Extra Tips
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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 1/4/24.
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 1/4/24.
If you have learnings to share or would like to join our efforts, email learnings@ALSCaregivers.org
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Keeping The Caregiver Healthy
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Create "Self-Time"
Leverage Equipment
◼ Just because a caregiver can “manhandle” or “physically lift” someone with ALS doesn’t mean they should. Over time, it will take a toll on their body.
◼ The Sit to Stand and Hoyer lift devices at first may seem intimidating with the slings and levers but after a few uses, the caregiver will have mastered them. It makes transfer between beds, chairs, toilets, etc. so much easier. See Overcoming Lower Body Weakness (Separate Book).
◼ Avoid manually repositioning someone in a wheelchair. Overtime this will be hard on the caregivers back. Leverage functions available with the power wheelchair to “reposition”. Use the power functions to lean the person with ALS back, elevate the legs and then pull the legs in pushing the whole body further back into the chair. Let the chair do the work. See Keep Your Body Moving (Separate Book).
◼ While you will likely have to pay out of pocket, an attendant control on a power wheelchair will make it MUCH easier to control the chair (and save the toes from getting smashed). Let’s face it, it hard to go thru a doorway, hallway and other narrow spaces when the caregiver must walk alongside the chair and use the throttle in the front. See Overcoming Upper Body Weakness (Separate Book).
◼ This is an all-consuming unrelenting disease. Self-time is essential for the caregiver to be there for the “long haul”.
◼ Just as the caregiver needs a break (even a short one). Be Real – So does the person being cared for. The person with ALS will enjoy some diversity in their day. A different face is something / someone they can look forward to coming over.
Audio - How a PALS can help their caregiver
◼ Even if the primary caregiver is working from home, it is less stressful if a helper can come over during the busy work times so that the caregiver can focus on their remote work and not have to keep 1 ear listening for a call for help.
◼ Even if it is just the two of you, the caregiver needs to let the person with ALS know that they just need to take 15 minutes. If the person with ALS needs you in an emergency, they should have the tools they need to reach out.
◼ Even if it is just the two of you, the caregiver needs to let the person with ALS know that they just need to take 15 minutes. If the person with ALS needs you in an emergency, they should have the tools they need to reach out.
Audio - Caregiver Perspective: Self Time
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Create "Self-Time"
◼ This is an all-consuming unrelenting disease. Self-time is essential for the caregiver to be there for the “long haul”.
◼ Just as the caregiver needs a break (even a short one). Be Real – So does the person being cared for. The person with ALS will enjoy some diversity in their day. A different face is something / someone they can look forward to coming over.
● When someone comes over, the caregiver should avoid the desire to stay and chat. They should leave the room. Take a walk. Run to the store. Go into another room do whatever relaxes them.
◼ Even if the primary caregiver is working from home, it is less stressful if a helper can come over during the busy work times so that the caregiver can focus on their remote work and not have to keep 1 ear listening for a call for help.
◼ Even if it is just the two of you, the caregiver needs to let the person with ALS know that they just need to take 15 minutes. If the person with ALS needs you in an emergency, they should have the tools they need to reach out.
◼ Even if it is just the two of you, the caregiver needs to let the person with ALS know that they just need to take 15 minutes. If the person with ALS needs you in an emergency, they should have the tools they need to reach out.
Video: Self Time
Audio - Caregiver Perspective: Self Time
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Don't Fight The Battle Alone
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The journey is easier when you aren’t fighting the battle alone. Can the caregiver do it all? Sure! Can you keep doing it day after day, hour after hour? Your heart says yes but your head says it’s hard and fatiguing. Be real, the caregiver is not as positive and pleasant on the 12th hour when they are helping as they were when they first started the day.
Scheduling Tools
◼ Create a contact list of sitters, handymen, etc. See Key Documents & Handy Resources (Separate Book).
◼ Utilize the LotsaHelpingHands app provided by the ALS Association to schedule times when help is needed. Friends and family who have signed up to help will be notified when something is posted, can sign up to volunteer, and will get reminder emails automatically.
◼ Utilize the LotsaHelpingHands app provided by the ALS Association to schedule times when help is needed. Friends and family who have signed up to help will be notified when something is posted, can sign up to volunteer, and will get reminder emails automatically.
Video: pALS Family Experience Using LotsaHelpingHands
◼ Preplan for caregiving early in the disease. Before the PALS becomes dependent on caregiving support, explore options and form a support team.
◼ There are some that say “call me if you need me” but you know it is just a passing pleasantry. Recognize “Those types” and graciously move on. Different friends, each with their own coping process, be flexible.
◼ Most people really do mean it. They want to make a difference. They just don’t know how. They are waiting for you to give them the opportunity to help out. Friends & family are good caregiver alternates. Start with small blocks of time where they come to visit with the pALS while the primary caregiver remains in the house until they get “comfortable”.
◼ Entertaining friends brings joy & normalcy but it does tap the PALS energy. Establish certain days and times when friends are received so the PALS has rest time enabling them to be their best for the visit. Make the visits early afternoon giving the PALS a chance to get through their morning routine without being rushed.
◼ There is a lot of little and big items reviewed in this series that can make daily living more comfortable. Pick items you learned about in the series and create a “wish list” / “gift list”. When those gift giving occasions come around (e.g. Birthday, father’s day, mother’s day, Christmas, etc.) give out your wish list for them to consider for gift giving.
◼ There are some that say “call me if you need me” but you know it is just a passing pleasantry. Recognize “Those types” and graciously move on. Different friends, each with their own coping process, be flexible.
◼ Most people really do mean it. They want to make a difference. They just don’t know how. They are waiting for you to give them the opportunity to help out. Friends & family are good caregiver alternates. Start with small blocks of time where they come to visit with the pALS while the primary caregiver remains in the house until they get “comfortable”.
◼ Entertaining friends brings joy & normalcy but it does tap the PALS energy. Establish certain days and times when friends are received so the PALS has rest time enabling them to be their best for the visit. Make the visits early afternoon giving the PALS a chance to get through their morning routine without being rushed.
◼ There is a lot of little and big items reviewed in this series that can make daily living more comfortable. Pick items you learned about in the series and create a “wish list” / “gift list”. When those gift giving occasions come around (e.g. Birthday, father’s day, mother’s day, Christmas, etc.) give out your wish list for them to consider for gift giving.