Facing Uncertainty in Life With ALS

Facing Uncertainty in Life With ALS
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Life is unpredictable. People get in car accidents. They have heart attacks. Tornadoes strike. I recently saw a viral video in which a rabid bobcat attacked a woman outside her home. We never really know what will happen next, and yet, we humans usually live with optimism for the future.

I appreciate when people ask how my husband, Todd, is doing.

I usually reply, “He’s hanging in there.” He’s had ALS going on 11 years now.

People sometimes continue the conversation, asking, “Has his health stabilized?”

The asker will look at me expectantly, as though waiting for me to answer in the affirmative, but the answer to that question is always no. People seem taken aback when they hear that Todd’s health continues to decline. My reply doesn’t fit the usual social script of positivity.

I understand because I find myself doing the same thing. When I ask someone how things are going, I hope for a good report of recovery or improvement. I want people to beat the odds. Given what we’ve been through, I could even celebrate someone holding steady.

Last week, I was cleaning the house when Todd’s shower aide came to get me. “Todd needs your help,” she said.

I went to the bathroom, and Todd told me he needed my help coughing. He reclined his wheelchair back, and I got the mucus up with a number of manual assist coughs.

The aide’s eyes widened. “That’s scary,” she said.

I shrugged. “We do this at least once a week.” It’s become the new normal, if you can call living in the ALS war zone normal.

The aide continued getting him ready for his shower, and I went back to the housework.

Ten minutes later she came to fetch me again. “Todd’s having trouble breathing.” There was panic in her voice this time.

I ran to the bathroom. Todd was in his shower chair, and he was having trouble catching his breath. Sometimes his lungs just keep filling up.

This time I administered abdominal thrusts with more urgency, my stress level high as I internalized the distressed expression on his face. I pushed so hard that the shower chair moved with each press, even with the wheels locked. I did more compressions with a foot behind one wheel, and the aide helped by holding the other side of the chair in place.

The mucus finally came out.

The aide again commented, “That’s scary.”

Agreed. And we’ve been living with these life-threatening events for several years.

With a track record of getting through these crises, it has become somewhat less scary, but there’s always stress and uncertainty now that Todd can’t cough on his own. Thus far I’ve been able to clear his lungs, but I don’t know how long we’ll be in this stage before things worsen.

We try to live day by day, but it’s not easy when we know the future will be harder.

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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