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I’m a spouse and my husband was diagnosed January ’19. As things settle down from those first few months of shock, I would say the hardest thing for me is when to step forward and help and when to step back and let him work something out. He’s still quite capable on most levels, but he’s a proud person and sometimes attempts things that can actually be detrimental. Separating the caregiver vs the spouse roles take more focus. It’s a dance we’re doing and will continue to do.
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I just lost about 10 lines of text when an errant finger bumped the wrong key so am shortening it. I’ve had ALS for nearly 3 years and am like an adolescent reverting to a baby. I’m 77 years old. I can’t help with anything and have limited abilities, including using a walker a bit. My wife is very supportive and does so much for me. I don’t know how, but she’s still with me.
We survive on love, humor, faith and support from church, family, many friends and ALS associated groups, including LiveLikeLou.
She goes to caregiver meetings, works out for stress relief, and has several friends with ailing spouses to talk to. I don’t know how she does it, but she’s my Angel. She has newfound patience- not easy as she is Italian! At this point we’re anxiously waiting for the Platform Trial to start ( with a spot for me I hope) and the miracle of a cure for all of us! My motto is: I MAY BE SLOW, BUT I’VE STILL GOT GO! -
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. -
Darrin – – I am so sorry that you are living in a toxic situation. You write that you have nursing care 18 hours a day – surely, one of the nurses is aware of your wife’s behavior? Would one of your nurses be a possible advocate for you to get in touch with a third party who could help? Or, your minister… the ALS Assoc. Care Coordinator… one of your friends… ?? Are you able to connect with anyone via phone or your computer? I wish you well, and hope you will keep using our forum and members to support you.
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My boyfriend of five years began to experience strong signs of ALS in January and ALS was confirmed in April 2020. We do not live together, but I spend much time at his house. The man who always treated me so well, loved me much and was always my rock is not always so nice anymore. I know that he is going through so much and it is still so new, I imagine if one has strong faith it would be easier to accept and not be so angry. I will continue to have patience, continue to be kind and continue to pray for Grace and for a cure. It was a tough evening tonight, but before I left, my man gave me a big hug and said “Thank you”, that was the first time, in what seems to be a very long time that he showed appreciation. It makes a difference. Your spouses (caretakers) lives, just like yours have been been turned upside down… just be kind to each other and show a little appreciation.
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