Labor of Love

As an actor, I go through regular periods of unemployment, and I always worry that I’ll never work again. Like most artists, I’m sure my last gig really was my last. Between jobs I can easily become discouraged, even depressed if I let it go that far. I try not to let it go that far; life is way too short. Still, I know what it’s like to feel useless. It’s not fun.

Fortunately, I know my life’s work isn’t over. If nobody hires me to act, I will produce a play (I’ve done that). If I can’t raise the money to produce a play, I will volunteer for a theater (I can usher). If nobody wants me to volunteer, I will memorize monologues and recite them on the subway (watch out, commuters). I will work.

But what if I couldn’t? What if there really was no job for me, and I couldn’t create one for myself? What if society didn’t want my services?

My mom has always been useful. In any situation she is ready to help, ready to serve, ready to make a difference. Before she developed dementia, she had a thriving volunteer life. Before that, she had a great marriage, a career, and three decades of child-rearing (her first child was born in 1949, and her last left for college in 1978). She used to tell me that, more than anything, she wanted to die busy.

Feeling useless is her worst nightmare. Unfortunately, she has plenty of opportunities to feel that way. She lives in assisted living, so all her meals and housekeeping are provided. She doesn’t drive (which is a good thing), so she can’t visit the sick or volunteer in nursing homes the way she used to. It’s not a good idea for her to tutor math anymore, although she’d love to do it. She needs simple projects, but her dementia makes it hard for her to plan and execute tasks on her own — things like writing a letter or organizing a photo album, the kinds of things many older adults can still do.

She has access to activities at her assisted living, but they are designed mostly to entertain, and entertainment isn’t the same as engagement.  It’s valuable, but it’s clearly not enough, at least not for her.

I was devastated when I began hearing Mom say, after just a month or so in her new home, “I feel so useless. Why am I still here? I’m just taking up space and spending your inheritance. Why don’t I just die?” I wanted to say, “Mom, don’t talk like that! Why are you being so negative?” But slowly, I began to get it. I’ve been there — not to that degree, thank God, but still . . . I know the territory.

So I said, “You’re useful to me. You’re my mommy.” And I thought, “Somebody needs to give this poor woman a job.”

Like me, like all of us, people with dementia need to be useful. They need jobs — ways to participate in the workforce for as long as possible, and then household chores, volunteer work, meaningful tasks that contribute to the community. They need to be needed. Dementia doesn’t have to stand in their way, if the rest of us are willing to rethink our response to the disease.

Thomas Carlyle said, “Work is the grand cure of all the maladies and miseries that ever beset mankind.” My mom’s dementia doesn’t have a cure. But her feelings of uselessness do.

Put that woman to work.

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Mom kneading bread dough in my messy kitchen.

12 thoughts on “Labor of Love

  1. Oh, how I love & appreciate this article, Carolyn!! Thank you for your insight into the “useless” feelings of people with this disease- I think that would be the worst byproduct of having the disease for me. Why can’t someone start a company that uses the talents of people like your mom?! Simple, short tasks that can be accomplished by very competent people who need to be needed. I’m thinking, I’m thinking…

    And BTW, Atlanta theatre needs you too much, so you will never stop being employed!

  2. I call your Mom once in a while and chat with her. I’m sure that she doesn’t remember any of it but it seems to cheer her up. Let me know if we can help. Jim and June.

  3. Hi Carolyn,
    A friend refered me to your site. My sweet mom died of Dementia a little over a year ago. She, like your mom always had to be busy, and on the go. I grew up in awe of her energy level, and would constantly joke that she could run circles around me! Her journey through assisted living was no different, at least in the beginning. She attended EVERYTHING, and would often attend the Independent Living functions as well. She, as all of us do, continued to need purpose in life…
    I started a blog this past December, on anniversary of her 1st year in heaven, in the hopes that my perspective might help someone traveling that same path.
    Thank you for sharing your mom’s life, while she travels this similar course.
    If you are interested you can find my blog at http://www.undiminishedbydementia.com.
    Peace and blessings to you and your mom!
    Marianne

  4. I am so impressed with your story and time and patience you take to find ways to engage your mom. I have worked in service to seniors for 29 years and love every minute of it. I am searching for a way to help more and continuously.

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