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Which resources have helped you the most as a caregiver?
Spouses and family members who step in and take on the role of caregiver for their loved one who has ALS – – are most likely first-time caregivers – – and not prepared for the many challenges ahead.
What or who helped you the most as you began your new role as a caregiver?
Was there a helpful resource that you could recommend to others? Who did you go to for answers? What key things would you now recommend to other first-time caregivers?
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8 Replies
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I recommend our caregiver members check out the columns written by Kristin Neva https://alsnewstoday.com/joyful-sorrow-kristin-neva/ and Juliet Taylor https://alsnewstoday.com/thunder-road-juliet-taylor/
Both write about their experiences, share tips, and are inspiring to read.
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Did you know that the website Your ALS Guide has written guidelines (plus videos) especially for paid caregivers? It can be found here:
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Do you find that advice shared in social media groups (like Facebook, Instagram, etc.) has been helpful for you? Do you trust the advice or check elsewhere …just to make sure?
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Use advice from a forum as a base and yes do further research. Each experience is individual.
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Check out Your ALS Guide website. My husband who had ALS for 5 years. I researched the many websites available but not one that was concise and understandable. We saw a big gap in the education for the caregiver whether family member or paid caregiver. We raised funds to support the Your ALS Guide. I hope patients and their caregivers find it helpful.
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I agree. This is an excellent website that has practical advice for ALS patients and their caregivers.
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<p style=”text-align: left;”>My husband was diagnosed over 3 years ago. The ALS clinic specialists and doctor were all very helpful, and for us they were over an hour away and over state line. The resource that we found most helpful was my husband’s palliative care doctor. Everyone with ALS should find a good local palliative care doctor. She has made a big difference in helping us navigate many issues related to this disease.</p>
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I tried to get help for my wife, but unfortunately, all the companies that I hired claimed to be Expert in ALS, but had no experience or knowledge about ALS,
I was so frustrated, As a caregiver I have a lot of health issues I could go to a Dr for more than 3 years, and I am falling apart
Her Family does do anything, as her brothers said that she is dead ready, there is no need for help,
Thank heaven for good neighbors they go shopping for me
So sad and so mad
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