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Family and caregivers: What do you wish you had known when your person with ALS was first diagnosed?
As someone living with ALS, I often think about how this disease impacts family members and caregivers. For the caregivers here, I am sure you’ve had to do a lot of learning and adapting throughout your ALS journey.
What resources may have helped you? Did the neuologist steer you to anything to help you as a caregiver? What have you since discovered that would have been fantastic to know back then?
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7 Replies
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I wish I’d known that my wife was going to leave me. I wish I’s known that my daughter was going to step up and be my caregiver.
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I wish I had not depended on my son’s Neurologist to walk us through this journey. His neurologist was unresponsive and not helpful. After a month of her telling us she would do something and not doing it, I learned that I would have to rely on myself to find the right resources and support for Ryan. I often wondered if she thought he would join an ALS Clinic, and she would be done with us, but Ryan’s insurance would not cover the ALS Clinic (A battle we are still fighting), but even that, she said she would call the insurance company and speak on his behalf, but she did not. We wasted nearly six weeks with her, but we are now on a good path with great support and resources.
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Donna2B, yes – – having a neurologist with limited patient interaction skills can be frustrating and delay treatments. I am happy to learn that you and your husband are now able to attend an ALS clinic and get quality support. When was your husband diagnosed? Hopefully our forum is a good resource for you both. I also recommend this site: https://www.youralsguide.com/
youralsguide.com
Your ALS Guide – Your guide to living with ALS
Your ALS Guide is a user-friendly website where people living with ALS, caregivers, and professionals can find educational guides, expert video clips, resources, and more...
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I wish my husband “G” had banked his voice immediately after his diagnosis. With bulbar onset and a year+ of misdiagnosis, we lost a precious opportunity. When he did get to bank his voice, it wasn’t his original voice, still better than nothing, but the voice and storytelling are now gone. Thank goodness for some adaptive tools.
This site and comments from pALS have been very helpful to me, even some of the tough-love comments. We are fortunate that our insurance has covered most needs, although there are some battles for sure, and most fortunate that we now have an amazing team supporting both of us.
His symptoms started November 2022 with diagnosis July 2024. Hospice will become part of our journey later this month.
Good energy to you all, ~L
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I will speak for my husband, who is my caregiver. I know he selflessly took on the role of my caregiver, but I don’t think he knew how big it would be. He’s learned to cook, do the laundry, and even do the house cleaning. At the time (15 yrs ago), there weren’t my resources for caregivers like there are now. I did my part by doing all the online searches and even doing my daily exercises so I can maintain my strength and not be so physically dependent on him.
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I would have wanted to my wife (being non-verbal) and all the family to learn “sign language”.
Perhaps that would make communicating easier.
We did get iPad and SpeechAssist app but my wife no longer has strength to handle the iPad.
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Geronimo, I too wished that my family knew sign language. But here’s the ironic twist – – pre-ALS, I spent a few years teaching at a community college where 1/4 of the students were hard of hearing. I became adept at conversing in sign language. Fast forward to my diagnosis…I thought Haha, I know sign language… but soon found that no one else did… and to top it off, my fingers are too stiff to form many letters of the alphabet!
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