Someone who you can trust to hear your fears, anger or frustration - - and not react negatively, but just listen. When you finally feel comfortable with your body's symptoms and feelings You are not alone feeling this way. We've all experienced it. The key is having the will to find yourself again and be comfortable living with ALS.
David - I was so saddened to read your comment That's a horrible feeling! I'm so scared I'll say the wrong thing. So here I am - googling what to and not to say to someone with ALS. Does she want me to avoid the ALS topic and have some normalcy? Or does she really need to bend an ear and just "vent" or share what she's feeling - and needs to talk about her diagnosis?
I'm so lost with all this! For the first time in our once very chatty friendship, I don't know what to say. I'm guessing your friends aren't sure how to help either. Let them ask you questions about ALS and ask you flat how what they can do that would be most helpful. Helping them feel comfortable interacting with you by telling them exactly what you need might be the way to get your friendships back on track.
I was just learning that with ALS, random moments of laughing or weeping can happen I had no idea Lastly, I'm scared - I'm scared for my friend, I'm scared for her children and her family, and I'm scared for me -- I'm scared I'll let her down or not give the kind of support she most needs.
Your friends may be scared, too. Reach out to your closest friends and tell them you need them. Wishing you the best! Fill in the required fields to post. Your email address will not be published.
Envelope icon Subscribe to our newsletter Get regular updates to your inbox. Your Email. Share this article: Share article via email Copy article link. Print This Page. About the Author Dagmar Munn When Dagmar was diagnosed with ALS at the age of 59 in , she tapped into her nearly 30 years of professional experience.
This article from The ALS Association offers tips on recruiting, interviewing, screening and hiring in-home help.
This article from The ALS Association explains the different types of home care workers and what their benefits are. This article from The ALS Association discusses the different ways home care can be covered or paid for. This article from The ALS Association explores the benefits of hiring a home health care agency who can handle a variety of tasks and services.
This article from The ALS Association offers tips on how to work and communicate with your new in-home service provider. This article from The ALS Association helps you understand if the time has come to require in-home help. Department of Veterans Affairs. Mary Hahn Ward. This article from the Center for Medicare Advocacy describes what hospice care is, how Medicare covers it and other important information on end-of-life care. Center for Medicare Advocacy.
This article from the Center for Medicare Advocacy presents information on what Medicare home health care is and which services are covered. This article from Your ALS Guide explains what you need to know about qualifying for, applying for and receiving Medicaid benefits.
This guide from The ALS Association offers tips on handling employment, financial concerns and legal issues. Daily Health Wire by TriHealth.
Navigating ALS is hard, especially when you don't know which questions to ask. Start here. This article from ALS Treatment explains how to recognize caregiver burnout and how to prevent it.
ALS Treatment. This comprehensive guide from Muscular Dystrophy Association provides information on finding, hiring and managing caregivers. This tool from Paying for Senior Care can help you discover if you can be paid as a caregiver to your loved one. This essay shares insight on how to love someone who has a terminal illness such as ALS. Tweed Thoughts. This article from The ALS Society of Canada shares methods and techniques available to help people with ALS and their partners cope with their changing sex life and intimacy.
ALS Society of Canada. This blog post from writer Kelsie Snow beautifully shares the deep sadness she felt as she watches her husband's ALS progress. Kelsie Snow. This article from Eluna describes signs to look out for in grieving children and ways to help.
Eluna Network. This page from Hope Loves Company features resources, including books, podcasts, movies, organizations and scholarships, for children who have or have had a love one with ALS. Hope Loves Company. This article from The ALS Association features information on the whats and whys of advance directives. This helpful article from Your ALS Guide discusses employment and employment-related considerations e.
This guide from The ALS Association explores the thoughts and feelings you may have as you approach the end of your life. This starter kit from the Institute of Healthcare Improvement offers prompts on how to talk about end-of-life care with your loved ones. The Conversation Project. This guide from the Institute of Healthcare Improvement lays out decisions in selecting your health care proxy. This guide from the Institute of Healthcare Improvement provides prompts to get the conversation started with your doctor on your end-of-life wishes.
This article from The ALS Society of Canada lists ways your friends and family can help when you share your diagnosis with them. This article from I AM ALS offers resources on how to best activate the support of your friends and family who want to help. This article from ALS News Today features tips on how to strengthen your relationships with friends and family members. Veterans are twice as likely to be diagnosed with ALS compared to their civilian counterparts.
Envelope icon Subscribe to our newsletter Get regular updates to your inbox. Your Email. Share this article: Share article via email Copy article link. Print This Page. About the Author Wendy Henderson Wendy is a proven blogger and social media manager who has helped to build online communities for businesses and organizations.
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