Caring For Someone With ALS (Amyotrophic Lateral Sclerosis)

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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, 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 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.

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