The ALS Association

ALS Ice Bucket Challenge Progress

Setting Aside the Guilt of Asking for Help

Dealing with big life changes isn’t easy. Add the diagnosis of a debilitating disease like ALS, and coping with scary unknowns can provoke an emotional fire. Fear and avoidance may surface, especially for people with ALS and their caregivers who can feel guilt and even shame about burdening other people with requests for help.

But when worry and hesitation strike, consider this: ALS family caregivers are also living with an ALS diagnosis. Each step in the progression of ALS can leave everyone exhausted and feeling overwhelmed. Without a solid support network, coping with the challenges of ALS can feel unbearable at times.

That is why finding the courage to ask for help is not only wise, but also necessary to maintaining your own mental and physical health during this stressful time.

Here’s How to Open Yourself Up to Receiving Help Without Guilt

Let people from your church or synagogue, job, neighborhood, and extended family know your situation. Practice saying yes to all practical offers of help. From taking care of simple errands such as grocery shopping, stopping by the post office or picking up the dry cleaning to taking care of light maintenance around the home, know that the people in your life who genuinely care about you will want to give you their support during this difficult time.

Consider this: accepting help actually lets your support network know that you value their friendship and offers of assistance. Know you’ll have many opportunities to express your gratitude and possibly one day even return the favor.\

Practice, of course, makes perfect. When it comes to requests for help, make a list of what you need and the names of people who may have offered to pitch in. Acknowledge their willingness to lend a hand by following up with a specific need such as asking:

  • Are you able to pick up a prescription today?
  • Can you come by on Tuesday to sit and just be with us for an hour?
  • Do you have time this week to make calls to help me find the best hospice care

The ALS Care Connection program  is also a helpful online tool that efficiently coordinates friends, neighbors, members of community organizations like your church, or other service groups who want to provide help for the person with ALS and his or her family, The program provides a plan for organizing help, training and information about what approaches tend to be most effective.

Make it easy for loved ones to stay connected by inviting people into your home. Have neighbors and family bring photo albums to look through with your loved one. Have meals together. Encourage friends to read favorite books to the person living with ALS, helping to bring a sense of community and connection — liveliness and compassion — into your home. It’s reinforcement for everyone that you’re not alone in the world as you cope with the big and small changes that ALS inevitably brings.

Additional Resources

The Share the Care book
http://www.alsa.org/als-care/resources/books/share-the-care.html 

Tips for caregivers to find time for themselves:
http://www.alsa.org/als-care/resources/publications-videos/factsheets/fyi-respite.html

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