If you are a spouse, child, friend, or formal caregiver, it’s important that you know that taking care of a person withamyotrophic lateral sclerosis (ALS)is challenging on so many levels—for anyone.While it’s definitely demanding, caring for someone with ALS can be fulfilling if you have the right mindset, support from others, and proper assistive devices, Here are a few tips to keep in mind as you navigate through your caregiving journey.funky-data / Getty ImagesEmpower Yourself With KnowledgeA little bit of knowledge goes a long way when it comes to caring for someone with ALS.You can be a more proactive and anticipatory caregiver if you understand why the person you are caring for cannot move well, has muscle twitches and spasms, experiences pain and excessive drooling, and has difficulty feeding and breathing,With a basic knowledge of ALS, you will be able to better predict the problems and prepare well for those transitions. This helps create the smoothest possible caregiving process.Seek SupportThe physical demands of caring for someone with ALS are vast and range from assistance with activities of daily living like bathing, using the bathroom, eating, and dressing to managing mobility aids. Eventually, they will need feeding devices and breathing machines. They may start with continuous positive airway pressure (CPAP) and then move on to aventilator.In addition, the caregiver of a person with ALS often has to manage the household, especially as a spouse or family member. This means cleaning, doing laundry, paying bills, making healthcare provider appointments, and communicating with other family members.ALS Healthcare TeamSeeking support from others is absolutely essential. You should start with your loved one’s ALS healthcare team, which includes a:NeurologistPhysical therapistOccupations therapistSpeech and swallow therapistNutritionistRespiratory therapistThis team of healthcare professionals can provide therapy to help ease the symptoms of your loved one’s ALS.Also, through your loved one’s ALS healthcare team, social workers can also provide you with information about caregivingsupport groupsthroughout your community, as well aspalliative careresources at the time ofdiagnosis, and ahospicereferral in the terminal phase of ALS.You might also consider reaching out to theALS Associationor an onlineALS support group guide.Assistive DevicesMuscle weakness is a primary symptom of ALS, and with that comes problems walking, eating, using the bathroom, bathing, and keeping the head upright (due to weak neck muscles).Assistive devices like wheelchairs, bathtub lifts, raised toilet seats, removable headrests, and special eating utensils can improve the functioning and quality of life of a person with ALS. This, in turn, can improve the quality of life of the caregiver.Other useful devices for caring for a person with ALS include special mattresses that can help prevent skin breakdown and muscle and joint pain.Electronic assistive devices, like speaking devices, can be adapted for hand or eye use to allow for communication and engagement.Be sure to talk with your loved one’s ALS healthcare team about how to go about obtaining these devices.Caring for Someone With ALSRespite CareAs a caregiver, you need to care for your mind and body in order to best care for someone else’s. In other words, you need breaks, You can ask a friend or volunteer agency to help your loved one while you take a break for a few hours.But your friends and family might not know how to take care of someone with ALS, especially if they have health problems or are responsible for taking care of others (like young children or another family member who needs help). And this is whererespite carecomes into play.Respite care may mean a few hours off to enjoy a movie, take a nap, relish in a nature walk, or go out to dinner or coffee with a friend. It may also mean taking a weekend vacation, so you can really take time off to relax and do something special for yourself.When seeking out respite care, there are a few different options. For instance, you can look into home health agencies that provide trained caregivers. You might consider moving your loved one to a residence, like a long-term care facility, that employs healthcare professionals on-site.CommunityIt’s important to remember that those within your community are often aching to help, but do not necessarily know what to do. It may be best for you to write out specific tasks that you need assistance with and then email them out to friends, family members, or neighbors.Be candid too—if cooking and cleaning are interfering with your caregiving, ask those within your community to help with meals or donate money for a house cleaning service.Watch for Symptoms of DepressionIf you are caring for someone with ALS, it’s common to feel a range of emotions including worry, fear, frustration, discomfort, and/or even anger. Many caregivers also feel guilt like they should or could be doing a better job or feelings of uncertainty about the future.Sometimes these emotions can be so strong that they begin to affect the caregiver’s quality of life. Some caregivers even become depressed.This is why it’s important to be knowledgeable about the early symptoms of depression and see your healthcare provider if you are experiencing one or more of them.Symptoms of depression are persistent, lasting nearly every day for two weeks, and may include:Feeling sad or downExperiencing a loss of interest in activities you once enjoyedHaving sleeping difficulties (for example, sleeping too much or having trouble falling asleep)Having a change in appetiteFeeling guilty or hopelessThe good news is that depression can be treated, either with a combination of medication and talk therapy, or one of these treatments alone.A Word From VerywellCaring for a person with ALS is difficult and energy-consuming, both physically and mentally. But while there will be many trying bumps along the way, be assured there will also be uplifting, soulful moments.In the end, your care, your attention, and your presence are enough. So be kind to yourself and remember to be mindful of your own needs.
If you are a spouse, child, friend, or formal caregiver, it’s important that you know that taking care of a person withamyotrophic lateral sclerosis (ALS)is challenging on so many levels—for anyone.
While it’s definitely demanding, caring for someone with ALS can be fulfilling if you have the right mindset, support from others, and proper assistive devices, Here are a few tips to keep in mind as you navigate through your caregiving journey.
funky-data / Getty Images
Empower Yourself With Knowledge
A little bit of knowledge goes a long way when it comes to caring for someone with ALS.
You can be a more proactive and anticipatory caregiver if you understand why the person you are caring for cannot move well, has muscle twitches and spasms, experiences pain and excessive drooling, and has difficulty feeding and breathing,
With a basic knowledge of ALS, you will be able to better predict the problems and prepare well for those transitions. This helps create the smoothest possible caregiving process.
Seek Support
The physical demands of caring for someone with ALS are vast and range from assistance with activities of daily living like bathing, using the bathroom, eating, and dressing to managing mobility aids. Eventually, they will need feeding devices and breathing machines. They may start with continuous positive airway pressure (CPAP) and then move on to aventilator.
In addition, the caregiver of a person with ALS often has to manage the household, especially as a spouse or family member. This means cleaning, doing laundry, paying bills, making healthcare provider appointments, and communicating with other family members.
ALS Healthcare Team
Seeking support from others is absolutely essential. You should start with your loved one’s ALS healthcare team, which includes a:
This team of healthcare professionals can provide therapy to help ease the symptoms of your loved one’s ALS.
Also, through your loved one’s ALS healthcare team, social workers can also provide you with information about caregivingsupport groupsthroughout your community, as well aspalliative careresources at the time ofdiagnosis, and ahospicereferral in the terminal phase of ALS.
You might also consider reaching out to theALS Associationor an onlineALS support group guide.
Assistive Devices
Muscle weakness is a primary symptom of ALS, and with that comes problems walking, eating, using the bathroom, bathing, and keeping the head upright (due to weak neck muscles).
Assistive devices like wheelchairs, bathtub lifts, raised toilet seats, removable headrests, and special eating utensils can improve the functioning and quality of life of a person with ALS. This, in turn, can improve the quality of life of the caregiver.
Other useful devices for caring for a person with ALS include special mattresses that can help prevent skin breakdown and muscle and joint pain.
Electronic assistive devices, like speaking devices, can be adapted for hand or eye use to allow for communication and engagement.
Be sure to talk with your loved one’s ALS healthcare team about how to go about obtaining these devices.
Caring for Someone With ALS
Respite Care
As a caregiver, you need to care for your mind and body in order to best care for someone else’s. In other words, you need breaks, You can ask a friend or volunteer agency to help your loved one while you take a break for a few hours.
But your friends and family might not know how to take care of someone with ALS, especially if they have health problems or are responsible for taking care of others (like young children or another family member who needs help). And this is whererespite carecomes into play.
Respite care may mean a few hours off to enjoy a movie, take a nap, relish in a nature walk, or go out to dinner or coffee with a friend. It may also mean taking a weekend vacation, so you can really take time off to relax and do something special for yourself.
When seeking out respite care, there are a few different options. For instance, you can look into home health agencies that provide trained caregivers. You might consider moving your loved one to a residence, like a long-term care facility, that employs healthcare professionals on-site.
Community
It’s important to remember that those within your community are often aching to help, but do not necessarily know what to do. It may be best for you to write out specific tasks that you need assistance with and then email them out to friends, family members, or neighbors.
Be candid too—if cooking and cleaning are interfering with your caregiving, ask those within your community to help with meals or donate money for a house cleaning service.
Watch for Symptoms of Depression
If you are caring for someone with ALS, it’s common to feel a range of emotions including worry, fear, frustration, discomfort, and/or even anger. Many caregivers also feel guilt like they should or could be doing a better job or feelings of uncertainty about the future.
Sometimes these emotions can be so strong that they begin to affect the caregiver’s quality of life. Some caregivers even become depressed.This is why it’s important to be knowledgeable about the early symptoms of depression and see your healthcare provider if you are experiencing one or more of them.
Symptoms of depression are persistent, lasting nearly every day for two weeks, and may include:
The good news is that depression can be treated, either with a combination of medication and talk therapy, or one of these treatments alone.
A Word From Verywell
Caring for a person with ALS is difficult and energy-consuming, both physically and mentally. But while there will be many trying bumps along the way, be assured there will also be uplifting, soulful moments.
In the end, your care, your attention, and your presence are enough. So be kind to yourself and remember to be mindful of your own needs.
2 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
National Institute of Health.ALS fact sheet.
Galvin M et al.Caregiving in ALS - a mixed methods approach to the study of Burden.BMC Palliat Care. 2016;15(1):81. doi:10.1186/s12904-016-0153-0Karam CY, Paganoni S, Joyce N, Carter GT, Bedlack R.Palliative care issues in amyotrophic lateral sclerosis: An evidenced-based review.Am J Hosp Palliat Care. 2016 Feb;33(1):84-92. doi:10.1177/1049909114548719Ng L, Khan F, Young CA, Galea M.Symptomatic treatments for amyotrophic lateral sclerosis/motor neuron disease.Cochrane Database Syst Rev.2017 Jan 10;1:CD011776.
Galvin M et al.Caregiving in ALS - a mixed methods approach to the study of Burden.BMC Palliat Care. 2016;15(1):81. doi:10.1186/s12904-016-0153-0
Karam CY, Paganoni S, Joyce N, Carter GT, Bedlack R.Palliative care issues in amyotrophic lateral sclerosis: An evidenced-based review.Am J Hosp Palliat Care. 2016 Feb;33(1):84-92. doi:10.1177/1049909114548719
Ng L, Khan F, Young CA, Galea M.Symptomatic treatments for amyotrophic lateral sclerosis/motor neuron disease.Cochrane Database Syst Rev.2017 Jan 10;1:CD011776.
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