While you can’t know exactly what to expect from ALS, you can pretty much 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’ve got backup. Being constantly on-call can take its toll on you – both mentally and physically. It’s easy to slip into a situation where 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 that you get enough time for yourself.
For help with ALS caregiving, contact these support organizations:
- Family Caregiver Alliance: www.caregiver.org
- Caregiver Action Network: caregiveraction.org
- National Alliance for Caregiving: www.caregiving.org
- ALS Association: www.alsa.org
- ALS Care: alscare.com
- AARP: careconnection.aarp.org
March 16, 2020
Christopher Nystuen, MD, MBA