Home Care for ALS |
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Home care is non-medical care that is provided in the home by paid caregivers who are either independent or employed by a home health care agency. Home care can include assistance with daily activities like transferring, bathing, toileting, dressing, grooming, and eating. It can provide much-needed breaks for primary family caregivers.
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When looking for home care, you’ll need to decide whether you want to hire an independent caregiver or go through an agency with caregivers on staff. There are pros and cons to each option.
Hiring an independent caregiver is usually less expensive, but you will need to find and interview candidates, conduct background checks, check references, and be in charge of scheduling, paperwork, taxes, and potential liability concerns. You will also need to resolve any issues or disputes yourself. It is usually a good idea to have a backup option for the times when your caregiver may be sick or take vacation time.
The other option is to hire a home health care agency that will send paid caregivers, sometimes known as home health aides, to your home on a predetermined schedule. Agencies are usually more expensive and may require a minimum number of hours, but they will take care of the paperwork, liability, logistics, backup coverage, and any issues that may arise. Rates will vary by agency and location.
Hiring an independent caregiver is usually less expensive, but you will need to find and interview candidates, conduct background checks, check references, and be in charge of scheduling, paperwork, taxes, and potential liability concerns. You will also need to resolve any issues or disputes yourself. It is usually a good idea to have a backup option for the times when your caregiver may be sick or take vacation time.
The other option is to hire a home health care agency that will send paid caregivers, sometimes known as home health aides, to your home on a predetermined schedule. Agencies are usually more expensive and may require a minimum number of hours, but they will take care of the paperwork, liability, logistics, backup coverage, and any issues that may arise. Rates will vary by agency and location.
Finding a Paid Caregiver
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Selecting the right person or agency is very important. It is worth doing research up front and conducting a thorough interview process to make sure you find the right match. Begin by asking your ALS clinic, local ALS organization, family, and friends for recommendations. Though not essential, it is best if you can find a caregiver who has experience working with ALS.
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Interview at least two or three individuals or agencies. If you decide to hire an agency, you can begin your search with the National Association for Home Care & Hospice’s agency locator. When researching agencies, look for online reviews, number of years in business, and whether they are licensed and insured in your state.
Before interviewing agencies, it can be helpful to make a list of questions such as:
Ultimately, you will want to look for individuals and agencies that take the time to understand your needs, really care, have good communication skills, and pay attention to detail.
Before interviewing agencies, it can be helpful to make a list of questions such as:
- Do your caregivers have experience working with ALS clients?
- How will you train your caregivers to work with an ALS client?
- Do you have caregivers who are strong enough for transferring?
- How will you communicate with family members?
- Do you require a minimum number of hours per visit or week?
- How many regular caregivers will you send?
- Will you always be able to provide backup coverage?
Ultimately, you will want to look for individuals and agencies that take the time to understand your needs, really care, have good communication skills, and pay attention to detail.
Who pays?
Hiring a paid caregiver or home health aide can be expensive and is not usually covered by insurance. You will likely need to pay out of pocket unless:
- You qualify for long-term care through your state’s Medicaid program*
- You purchased a long-term care policy before your ALS diagnosis
- You qualify for assistance with a short-term assistance respite program
- You are a U.S. military veteran with service-connected benefits
*Medicaid has a program that helps qualifying individuals receive long-term care in their homes, assisted living facilities, and skilled nursing facilities. This program is separate from Medicaid health insurance, and eligibility guidelines are different. Some people who do not qualify for Medicaid health insurance may qualify for long-term care assistance.
Help from Family and Friends
If hiring paid caregivers is too expensive, then family, friends, and others may be able to help with non-medical home care. Learn about your respite care options and how you can ask for help.
Learn About Caregivers' Training and Experience
Levels of training and experience vary among paid caregivers. Some may just have experience helping with activities like bathing, dressing, and meal preparation. Others will have more formal training and can perform more advanced tasks.
Depending on your state’s laws and levels of caregiver certification, some caregivers may not be allowed to perform tasks like dispensing medication, administering liquid food supplements for the feeding tube, or using certain medical devices. It is important to ask your caregivers and/or agency what they know how to do and what they are and not allowed to do.
ALS is rare enough that even experienced caregivers may have never cared for a person living with ALS. And not every agency will train their caregivers how to care for someone living with ALS, or even educate them about the disease.
All of this means that you will need to help train and support your paid caregivers, especially in the first few weeks. Even if your caregiver does have experience with ALS, every individual and situation is unique.
Depending on your state’s laws and levels of caregiver certification, some caregivers may not be allowed to perform tasks like dispensing medication, administering liquid food supplements for the feeding tube, or using certain medical devices. It is important to ask your caregivers and/or agency what they know how to do and what they are and not allowed to do.
ALS is rare enough that even experienced caregivers may have never cared for a person living with ALS. And not every agency will train their caregivers how to care for someone living with ALS, or even educate them about the disease.
All of this means that you will need to help train and support your paid caregivers, especially in the first few weeks. Even if your caregiver does have experience with ALS, every individual and situation is unique.
Train and Support Your Caregivers
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Taking the time up front to answer questions, communicate your preferences, and show your caregivers how to do things should pay off down the road and give family caregivers more free time to do things like work, run errands, exercise, socialize, and recharge.
If you are currently using any medical equipment, you will want to take time to teach your caregivers how to use each device (as long as they are allowed to use it). |
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If you feel your caregivers need more formal training than you can provide, ask your ALS clinic team or neurologist for suggestions. A member of your clinic team may be able to provide assistance by phone or video. You might also be able to ask home health or other professionals who already visit your home for help.
Here are some other things you can do to help train and support your caregivers:
- Educate them about ALS and your disease progression
- Help them feel welcome and supported in your home
- Show them around your home, including where things are
- Let them know if there are any parts of your home where you would like privacy
- Let them know the best way to reach and communicate with family members
- Leave a list of important phone numbers for family, friends, neighbors, doctors, the local fire department, etc.
- Make a written care plan for each day or week and update as needed
- Each time your caregiver arrives, give an update on anything that has happened (such as a fall) or changed since their last visit
- Leave a list of light housework that can be done if there is any downtime
Some families also make detailed care binders that include all important information regarding health, ALS care, and advance directives so that caregivers, medical professionals, and others can find all of the important information and documents in one place when needed.
ALS Guide for Paid CaregiversOne way you can help train your caregivers is by sharing our ALS Guide for Paid Caregivers, which teaches caregivers about ALS and how to care for a person living with the disease. You could either ask your agency to use it as part of their caregiver training or show it to your caregivers once they are in your home.
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Advocate for Quality Care
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When you are paying someone to provide care in your home, you should be very happy with the quality of service that you receive.
If not, you have every right to advocate for yourself. You can begin by bringing up your concerns with the agency or individual. |
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If you still feel unsatisfied, uncomfortable, or untrusting—for any reason—you have the right to change caregivers, whether it means requesting another person from the agency or finding a new agency altogether. You are paying, so you should feel comfortable with the person who is spending so much time in your home.
A good professional caregiver should:
A good professional caregiver should:
- Be punctual, reliable, and trustworthy
- Be kind, patient, and friendly
- Abide by your written and verbal agreements
- Respect your house rules and personal requests
- Assist as needed with activities like bathing, dressing, and eating
- Be proactive and go the extra mile (not just sit down and watch TV)
- Help with light housework when there is downtime
