How ALS Affects the Hierarchy of Needs

Kristin Neva avatar

by Kristin Neva |

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I’ve written before about how the world has been shrinking for my husband, Todd, and me. Some activities, such as going on vacation or visiting people in their homes, became too difficult, even before social distancing mandates, due to Todd’s worsening ALS symptoms.

But we still made an effort to get out. We went on family outings to hockey games. We went to church, where my daughter and I led preschool music every week. Todd went out to Applebee’s with his friends. I went to the gym every day. I was part of a local ukulele group that met once a week, and went caroling at a nursing home last Christmas.

Since March, all of those activities have come to an end, and our world is even smaller.

It’s hard to be stuck at home, because I’m an extrovert. I miss getting energized by being around others, but at the same time, I feel a sense of relief. I have been exhausted trying to maintain a sense of normalcy, getting out for activities while being a caregiver. Todd’s needs are extensive.

Todd has no sense of relief that he doesn’t get out anymore. He feels a sense of loss, like when he couldn’t squeeze a mustard bottle anymore. He has always wanted to maintain independence for as long as he could, because he felt as soon as he couldn’t do something, he would never do it again. He has come to expect gradual losses, but in March, there was a sudden loss to his social life. And now, even if life in our country returns to normal, he fears he won’t ever do those things again.

Psychologist Abraham Maslow laid out a hierarchy of needs model that starts with the most basic. The gist of his theory is that people’s basic needs take priority, and until those are met, folks aren’t able to pursue other needs to help them grow and reach their potential.

Basic needs are things like food, water, warmth, rest, safety, and security. I spend much of my day meeting those basic needs for our family by preparing meals and maintaining our home. I’d also add breathing and pain management to that list. Some days, Todd requires a lot of assistance from me to meet those needs, such as helping him clear his lungs.

I spend time addressing our kids’ growth beyond the basics — their school work, creative activities, social interactions, and opportunities to try different activities. I am “Taxi Mom,” so they can connect with friends and participate in extracurricular activities. Todd and I work to provide an encouraging home environment for them.

It has become increasingly difficult for Todd and me to meet needs beyond the basics. Maslow’s model recognizes that life experiences sometimes force people back to focusing on just meeting the basic needs.

And with that comes a sense of having life cut short, of us lacking the opportunity to grow. We piqued many of those other growth areas before ALS, so we feel the loss. Todd and I have our family, but our social connections are limited. He feels the loss of no longer having a sense of purpose through his work. I have a loss of sense of security with his health being so precarious.

Some days, we are caught in the minutiae of basic survival.

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Comments

Anne avatar

Anne

Kristen and Todd,
Your love and courage and grit are blessings to those of us who live and have lived this struggle. But to quote you and not a behavioral science genius, you endure—- how? “Let’s just call it love.” Prayers that something so beautiful happens to your family today that you want to put it in a frame. 🙏❤️😘😀

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Kay Nichols avatar

Kay Nichols

Kristen thank you for putting into words the everyday issues that many of us caregivers have. It is a journey that none of us were ready for and it is one that has no map. We do what we can for our loved ones with the hope of finding a cure someday in the future. May not be soon enough for our husbands but it will come. Meanwhile we must share the journey with other caregivers to offer help, advice, and support. God bless you Kristen and Todd.

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