• Leslie Gafford replied to the topic What do caregivers need? in the forum A​ ​Forum​ ​for​ ​ALS ​Caregivers​ 2 years, 7 months ago

    I can relate to the “time-out” concept, and the dilemma of wanting to be there for my husband, but wishing he was still busy with work and pre-occupied with projects so that every little thing I say or do doesn’t require a consult and communication…how terrible of me!  Also, I noticed just days after his diagnosis, that in certain circles, my expected difficulties are not the most desired topic of conversation – I immediately felt “different” from other members of a group of friends who have been my BFF’s since middle and high school; we get together basically monthly to have dinner and complain about simple stuff, but when it comes to ALS, they can’t relate, and they don’t know what to say or what to ask.  Caregivers need care, understanding, some portion of normalcy daily, and also a time-out!


    • Leslie, you are so right about caregivers needing care. Dagmar has some great insight and advice. Please keep us posted on how things are going. When I was helping to take care of my father, the ALS Association was wonderful. .

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