Caring for Someone With ALS

If you are a spouse, child, friend, or formal caregiver, it's important that you know that taking care of a person with amyotrophic 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.

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 a ventilator.

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:

• Neurologist
• Physical therapist
• Speech and swallow therapist
• Nutritionist
• Respiratory therapist

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 caregiving support groups throughout your community, as well as palliative care resources at the time of diagnosis, and a hospice referral in the terminal phase of ALS.

You might also consider reaching out to the ALS Association or an online ALS 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.

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 where respite care comes 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:

• Feeling sad or down
• Experiencing a loss of interest in activities you once enjoyed
• Having sleeping difficulties (for example, sleeping too much or having trouble falling asleep)
• Having a change in appetite
• Feeling guilty or hopeless

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.