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  • Home
  • Get Started
    • About ALS
    • Newly Diagnosed
    • People with ALS
    • Veterans with ALS
    • Caregivers
    • Family & Friends
    • Research & Treatment
    • Common Questions
  • Planning
    • Health Insurance
    • Medical Decisions
    • Care
    • Employment
    • Transportation
    • Home Modifications
    • Travel
  • Equipment
    • Overview
    • Home & Daily Living
    • Bathroom
    • Mobility
    • Respiratory
    • Communication
  • Resources
    • Support Services
    • ALS Clinics
    • Support Groups
    • ALS Registry
    • Support the Cause
    • Resource List
    • Glossary
  • About
    • Our Story
    • Myna's Story
    • Our Team
    • Contact Us

Getting Help

Caregivers often wonder how they are going to keep up with everything. Full-time caregiving on top of life’s daily demands can feel overwhelming. If you also have a job, it can feel downright impossible.
 
The answer is that you probably cannot do everything on your own. You will need support. Caregiving can involve everything from errands and chores to bathing, dressing, feeding, and transferring your loved one from bed to wheelchair to couch to toilet.
Some families have the means to hire professional caregivers for non-medical home care. But most families cannot afford it. And most insurance won’t cover home care unless it is considered medically necessary. You may find some support through respite programs, but for the most part, you will need to reach out to your family, friends, and larger community.

But what if I don't want to ask for help?

At first, many caregivers think they should be able to handle everything on their own. And they feel guilty for leaving their loved one’s side.
 
Unfortunately, the result of this go-it-alone approach is that the caregiver ends up feeling frustration, isolation, helplessness, anger, and even resentment toward the loved one. It can put a strain on your relationship, which is the last thing you need.
 
No matter how much energy you have—and no matter how much love you have to give—you cannot do this alone. Nor is it wise to try.

How should I ask for help?

The good news is that there is probably more support out there than you realize. Your family, friends, and communities (school, church, neighbors, etc.) often want to help, but they may not know how. The trick is figuring out how to mobilize support so that it works for everyone.
​

You may feel uncomfortable asking for help. You may also be so overwhelmed that you can’t imagine coordinating it all. These are two good reasons why you should try to identify a point person other than yourself to take the lead. You have enough on your plate.Try to think of a trusted friend or family member who is organized, communicates well, and might have enough time to help. Ideally, the person will also be tech savvy.

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Nowadays, there are many great online tools that can quickly and easily mobilize support from your larger community. Online calendar options—like Lotsa Helping Hands, Caring Bridge, and Google Calendars—allow you to post needs where people can sign up. Of course, coordination can also be done by phone or email.
 
Brainstorm concrete things that would be helpful. People will not know what you need unless you tell them. Here are a few ideas of what volunteers could do:
 
  • Come over for a visit and/or help with personal care
  • Take your loved one out for a meal, movie, or event
  • Help run errands, do yard work, or walk the dog
  • Provide transportation to appointments
  • Bring over a meal
 
The ALS Association has a program called Care Connection that coordinates this process by training your designated care coordinator and providing guidance to get started. The program recommends using Lotsa Helping Hands as your coordination tool.
 
If you coordinate with others and develop a set routine, you can have some chunks of free time to work, get things done, take care of yourself, keep up with your friends, and continue to do the things you enjoy.
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Get Started

About ALS
​Newly Diagnosed
People with ALS
Veterans with ALS
Caregivers
Family & Friends
​​Research & Treatment
Common Questions

Planning

Health Insurance
Medical Decisions
Care

Employment
Transportation

​Home Modifications
​Travel
​

Equipment

Overview
​Home & Daily Living
Bathroom
Mobility
Respiratory
Communication​

Resources

Support Services
ALS Clinics

Support Groups
​
ALS Registry

​Support the Cause
Resource list
​Glossary

About

Our Story
Myna's Story
​Our Team
​Contact Us

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