My husband now 48 began having symptoms in 2019, we ignored it and chalked it up to him not paying attention. After her began losing weight fast, without trying, we knew something wasn't right. He went to his primary, had a ton of blood work and test done which all came back normal he then went to go see a hand specialist, the best in the country, who thought that he had a ruptured tendon. His sister, being a nurse, referred him to a neurologist we thought maybe neuropathy, turned out ALS. He was diagnosed in August of 2023 after an EMG showed clearly upper and lower MND. Since that day not much has changed in life other than his mobility and his use of his hands, my depression and anxiety are through the roof but we're fortunate that he is not on any breathing treatments or a feeding tube. He can still eat and drink and speak. The scariest part is every morning waking up to see if he still has full use of everything that he had the day before. We never know what the day may bring or what might be taken. He remains positive tries to put it out of his head as much as possible until his body is too obvious for him to ignore. Personally, I look at him no differently than I did before his symptoms even started. I can't even see the degeneration unless I watch him trying to do something that he used to do with ease. This disease is a taker. It takes everything from the person diagnosed and the people who love the chosen. We've been married 21 years this year, I don't know adult life without him, so close to empty nester and soon retirement, all that taken from us just as he hits the comfortable level at his work. We had so many plans, so many places we wanted to go and now we just want to find a way to slow his progression. I will never be able to put into words what this disease is taking from me. I will never be able to explain to anyone what it has taken from my husband. I really don't know how I will ever recover after caregiving for him and failing. There is no winning from the taker, he only takes, everything, and then walks away with you left with nothing, empty, without purpose and alone. My heart that I can still feel goes out to anyone suffering from this taker and the familys that are trying to maintain. I pray for you all
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What a beautiful, heartbreaking piece of writing.
As a person with ALS I often describe myself as a mess getting messier, but somehow my wife still loves me apparently as much as she ever did. I suspect that your husband and I are very fortunate in the wife category. I base that on the following line from your piece "Personally, I look at him no differently than I did before his symptoms even started. I can't even see the degeneration unless I watch him trying to do something that he used to do with ease".
I'm afraid I disagree with you on this second quote "I really don't know how I will ever recover after caregiving for him and failing". Under no circumstance did you fail, you didn't give up on him and you loved your husband to the end, and that in all likelyhood is the best gift you could ever give him.
I will share a quote with you that rings very true to those of us travelling this path. "To love and care for someone who is whole is one thing. To love and care for a person when he or she is broken is quite another. That is the deepest kind of love; a love discovered only through vulnerability andg pain". Steve Leder