The Straw That Breaks the Camel’s Back
A couple weeks ago, one of our toilet tanks developed a crack and started leaking. I turned off the water, and while we waited for a new tank to arrive, we filled a bucket with water from the tub to flush the toilet or used the other bathroom.
On Saturday, my 12-year-old son and I worked on the repair while my husband, Todd, who has ALS and is paralyzed, coached us. We successfully got the old tank off, but the new tank didn’t seem to fit. I was following the installation instructions, and Todd even found an instructional video from the company showing that the tank sat level with bolts coming through the bottom of it into holes on the back of the bowl. But the bolts on our tank weren’t long enough. I could feel my frustration growing.
“This is not a big problem. This is not a big problem,” I repeated to myself. Worst-case scenario, we would hire a plumber to install a new toilet.
The following Monday, I called the manufacturer and explained the problem I was having with the installation. After getting no insight from customer service, I searched the internet and found message boards where people discussed having to tilt the tank forward to start the threads of the front bolts, and then back, squishing the gasket down, to thread the nut on the back bolt. I tried it and was able to secure the tank. Phew.
Having a broken toilet shouldn’t be a big deal, especially since we had another bathroom to use, but because I am living with the constant stress of Todd’s ALS, it was the proverbial straw that threatened to break the camel’s back. I don’t have extra capacity for one more thing to go wrong, so when something does, I feel overwhelmed. And that was a small problem. Other problems that arise are more than loading straw on the overloaded camel’s back — they’re like adding logs.
Todd can’t sleep independently and needs frequent adjustments and turning throughout the night. Six years ago, after two years of sleep deprivation with no end in sight, I was at my breaking point. We needed to bring in outside help. This is not covered by insurance, but thankfully, friends and family are helping us fund Todd’s night care.
But it’s a challenge to find people to work nights. Our local home health agencies don’t currently have staff available, so we hire people directly. Recently we had a few caregivers leave for health reasons. I was able to find replacements, but this week one of those replacement caregivers quit and I’m back to looking for leads.
Just the thought of having to be up all night gives me anxiety. I am at my maximum load and need uninterrupted sleep for my mental and physical health.
I know I need to take care of myself. But how am I supposed to do so when it is such a scramble to find outside help? I wish we had a better healthcare system in our country. I wish that Medicare provided a reasonable amount of home health assistance for people who are paralyzed. (In order to really address the problem, Medicare would also need to increase reimbursement rates so home health workers would get paid more and agencies could attract enough staff.)
How can I choose between my physical and mental health and Todd getting the care he needs? I don’t have the answers, but I want both. I want Todd to get the care he needs, and I want to sleep at night.
I would like to be at a place where I feel like I have the capacity to add more straw or even a few logs to my load rather than carrying so much all the time.
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About the Author
Sophie Damji
Kristin,
Thank you for sharing your journey with us. So many of us are caregivers for ALS patients and reading your posts helps us cope.
Kristin Neva
Thanks for commenting, Sophie!
Maggie Broeren
My prayers extend from Milwaukee to you and to heaven. I sure wish our journeys were easier. Please know I’m always delighted to read your posts even when the challenges seem endless.
Hope you have a lovely Mother’s Day, Kristen. Peace be with you.
Kristin Neva
Thanks Maggie!
Gail Albert
Kristin,
Your columns never fail to resonate with me. My husband began with bulbar onset in 2017 and lost speech ability a year later. He is full time care now as his limbs are all but paralyzed and I am his only caretaker. A job that is a labor of love, though enormously draining. But, perhaps, the worst is watching helplessly as he slips with each loss. Memories of what used to be are comforting, yet evoke tremendous sadness. Stress, sadness, and exhaustion seem to be ever present companions. Thank you so much for sharing a glimpse into your world. So often during a difficult time, I will find myself thinking of you and it helps and I find strength in that.
Kristin Neva
Gail, I'm sorry things are so hard for you. It is definitely a labor of love, and yes, enormously draining. Thanks for your comment.
Kelsey Myers
Thank you for sharing! I can so relate! I really appreciate your articles. I enjoyed Joyful Sorrow as well! Makes me feel less alone in this knowing there are others like you who are living some of the same events, anxieties and emotions that I am, too, while also fighting to stay positive and take care of themselves so they can care for their familiess. God bless you and Todd!
Kristin Neva
Thanks Kelsey!