Caring for Someone with ALS — Conclusion

Be patient

While you can’t know exactly what to expect from ALS, you can bet that it will gradually progress. Over time, it will become increasingly difficult for your loved one to walk, speak, and care for herself or himself. Try not to get angry or frustrated with them. Be as patient as you can.

Care for yourself

Caregiving is a 24-hour-a-day job. You can’t call in sick or take a vacation unless you have backup. Being constantly on-call can take its toll on you, both mentally and physically. It’s easy to slip into a situation in which you’re living entirely for the other person, without paying any attention to your own needs.

You can’t do much good for your loved one if you’re constantly stressed and overwhelmed. Take time for yourself every day. Make sure you eat a well-balanced diet and exercise. Refresh and regroup by getting out — even if it’s just to grab a cup of coffee or check out a library book. Ask a friend, family member, or professional caregiver to take over for you at least once a week, to ensure you get enough time for yourself.

Resources

For help with ALS caregiving, contact these support organizations:

• Family Caregiver Alliance: https://www.caregiver.org/
• Caregiver Action Network: caregiveraction.org
• National Alliance for Caregiving: https://www.caregiving.org/
• ALS Association: https://www.als.org/
• ALS Care: alscare.com
• AARP: aarp.org/caregiving

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