Advice for the ALS Caregiver

Cynthia Knoche is the Senior Director, Resources and Referral for the ALS Association. She says caregivers face both emotional and physical challenges when caring for a loved one who has been diagnosed with an illness with no significant treatment or cure. “It can be devastating for the person diagnosed and their loved ones; however, many tools, techniques and therapies are available to maintain quality of life,” Knoche says.

A caregiver can work with their loved one to acknowledge that significant changes in physical function and financial requirements are on the horizon, she explains. This allows both parties to develop a plan for future needs that is realistic and a reasonable adjustment to important goals. Knoche says that intimate relationships are cultivated during the times of physical challenges, and that a caregiver should encourage a loved one to participate in the activities they love, even if adjustments to time, place or duration must be considered.

“ALS progresses at a different rate in everyone,” she adds. “Embrace the successful quality of life experienced at each stage of the journey."

Knoche explains that caregivers must recognize that frustration, depression, anxiety and exhaustion are common emotions for those with ALS, and especially as the disease progresses. Many of these arise when physical abilities decrease and the need for assistance increases.

She recommends caregivers learn about the equipment and assistive technology available. One option is to connect with a local ALS chapter or ALS Certified Treatment Center for advice. These technologies are there to support the caregiver, as well as the loved one, she notes. “Be proactive; investigate and acquire equipment before it becomes an urgent issue,” Knoche says.

Caregivers must consider equipment which keeps them safe, but also find balance in their own daily lives while caring for someone with ALS. She says communication is key, and that discussing personal needs with the loved one is just a first step in self-care. Another is cultivating an awareness of physical, emotional or relational stress signals, then trying new methods of relaxation. She says maintaining a sense of self is part of a caregiver’s job, as is asking for support from family, friends and community. “Recognize priorities may change multiple times during this journey,” Knoche explains. “Accommodate the here and now.”

She says a caregiver’s quality of life in turn contributes to a better quality of life for a loved one with ALS. It also helps a loved one feel as less of a burden, and brings more consistent care, hopefulness and better communication with everyone involved.

When asked for five best tips for caregivers of those with ALS, Knoche offers the following:

  1.  Recognize an ALS diagnosis impacts the entire family, work and social network of a loved one.
  2.  Acknowledge the progressive nature of ALS, and develop a strategy for how to cope with changes.
  3. Identify challenges, investigate options and choose a plan of action or accommodation. If it doesn’t work, change it.
  4. Accommodate the increased amount of time needed for everything in your daily schedule.
  5. And finally,-  Accept help.