Darrin James
Forum Replies Created
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I understand ,Dagmar . Sorry . . . is it okay if I focus on the on the subject of the forum ? Can I delete my last post ?
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My wife, best friend , mother of our children , formerly fierce advocate has turned into a monster . . .
I’m crushed having seen my wife’s metamorphosis from my warrior to a toxic villain. She has destroyed my room with my 13yo daughter and is working on my 8yo son .
I am approaching 16 years since my diagnosis with ALS . I wasn’t disabled until 4 years ago . I could still walk , though a bit slower . When I finally had the tracheotomy and became a wheelchair user , I was devastated . I know that I am very fortunate to have a slower progression of MND, but I sometimes wish I had died in 2015, shortly after our 20th wedding anniversary family trip to France and Italy .
I was reassured and confident that my wife would be the loving wife that she’d always been . Within a couple of months of coming home , I was heartbroken at what the apparent impact on her and subsequently , our relationship . She expresses no love for me , she yells and curses at me in front of our kids , and she is distant . We have nurses 18 hours a day . Even 6 hours of caring for me is to much . She spends 4 to 5 hours in our bedroom . I have to call out to her with my text to speech computer . She often ignores me and I have to repeatedly call for her . I have made some tiny progress and tried many recommend methods . I would appreciate any suggestions !
I love her and,, miss her love so much. -
I still have nurses that stay over night . And day time help . I am afraid of catching Coronavirus from one of them . I have been meaning to ask my wife .
We live near Boston . Boston has the 3rd most Coronavirus cases . 25,000 . I don’t want to die when we are very close to a treatment or cure .
I am also concerned that I would lose our nurses , but I guess it wouldn’t matter if I die, from catching the Coronavirus from a nurse .