He’s Grieving The Amazing Woman His Wife Was Before She Was Diagnosed With ALS
Amyotrophic lateral sclerosis, more commonly referred to as ALS, is a neurodegenerative disease that progressively gets worse and impacts a person’s nerve cells in their spinal cord and brain.
Muscles grow weaker and ultimately result in someone becoming paralyzed. There is no cure, and it’s not exactly known what the cause of ALS is.
Sadly, this man’s 43-year-old wife was diagnosed with ALS five years ago, and he’s grieving the amazing woman she once was before ALS took that away from him.
“Before ALS, she was very active and ran or exercised daily, played video and board games with me and our two sons, cooked amazing meals; she wore very nice clothes and shoes,” he explained.
“These days, she is in a wheelchair, uses devices to communicate as ALS has taken away her speech, and has a trach and ventilator to breathe. She gets nutrition via a feeding tube peg in her stomach. She now wears mostly sweatpants and other clothes that are more ideal for being in a wheelchair.”
“Due to her condition, she wears diapers and has a catheter. We still have a drawer full of her underwear that she no longer uses or wears because of the diapers.”
He still has all of his wife’s clothing sitting in their house, and he knows it’s time to donate them all since she will not get better, but he can’t bring himself to do that.
His wife now requires caregivers to help her get through the day. While he does work from home and can assist with her care, nurses, his in-laws and attendants pitch in so he can do his job.
His wife has to sleep in a hospital bed now, and he misses being able to fall asleep next to her every night. He does have a bed in the same room as her, so he can sleep close by.
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In the mornings, he gets up, changes his wife’s diaper, bathes her, and drains her catheter. When he’s done with work, he goes back to taking care of her, getting her fed through her feeding tube.
“Before ALS, we would do various outings like date nights, game nights, sons’ sports games, plays, etc., with ease,” he added.
“Last weekend was my older son’s (14) first baseball game of the season, which my wife attended. Before we left, I had to make sure we had supply bags ready to have her diapers, emergency vent supplies, [and] an extra set of clothes in case of accidents.”
“My sons are starting to help more with her care. My 12-year-old carried out the supply bags to the van and helped me secure my wife’s wheelchair in the van.”
He misses how easy it was to attend events prior to his wife getting diagnosed with ALS. He feels terrible that his sons have to pack diapers and supplies so they can leave the house.
It’s been hard for him to adjust to changing his wife’s diapers and stepping in to do so many of the tasks she can no longer complete on her own.
He loves his wife with all of his heart, and he always will, but it’s been tough to come to terms with how their life is no longer normal.
“At this point, I’m just happy that she’s here with me and our sons,” he concluded.
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