Caring for Someone With ALS

Three Tips to Ponder as You Care for Someone With ALS

Mom caring for son with ALS
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Regardless of whether you are a spouse, child, friend, or formal caregiver, taking care of a person with amyotrophic lateral sclerosis (ALS) is challenging on so many levels.

However, with the right mindset, support from others, and proper assistive devices, caring for someone with ALS can be fulfilling. 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.

By understanding why the person you are caring for cannot move well, has muscle twitches and spasms, experiences pain and excessive drooling (called sialorrhea) and later has difficulty feeding and breathing, you can be a more proactive and anticipatory caregiver.

In other words, with a basic knowledge of ALS, you will be able to better predict the problems your loved one, family member, friend, or partner has and can prepare well for those transitions—a means of creating 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 and eventually feeding devices and breathing machines, first a CPAP and then a ventilator.

In addition, the caregiver of a person with ALS often has to manage the household as well, especially if he or she is a spouse or family member.

This means cleaning, doing laundry, paying bills, making doctor 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 and occupational therapist
  • Speech and swallow therapist
  • Nutritionist
  • Respiratory therapist

This team of healthcare professionals can not only assist you with the caregiving process but also 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 on 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.

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 for 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. Finally, there are electronic assistive devices like a speaking device that 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, 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 or even a residence, like a long-term care facility, that employs healthcare professionals on-site. Lastly, you can opt to simply ask a friend or volunteer agency to provide respite care for a few hours.

Community

It's important to remember that those within your community are often aching to help, but do not necessarily know how. 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 you find that cooking and cleaning is interfering with your caregiving, ask those within your community to help with meals or donate money for a house cleaning service.

Watch Out 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 doctor 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.

Sources:

Galvin M et al. Caregiving in ALS - a mixed methods approach to the study of Burden. BMC Palliat Care. 2016;15(1):81

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.

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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