caregiver woes

Of recent, when speaking to my mother on the phone, I sense her fading away. These days, she rarely responds to Mom, but rather to her name, Harriette. My brother Matt, who cares for her, hasn’t called her Mom in years. Sometimes, she becomes silent on the other end of the line and I know she is weary of conversation, and so I must simply hang up.

Our conversation the other day got me to thinking whether or not Calvin knows his name. When I call his name he doesn’t respond, doesn’t look at me, doesn’t register in any way, is silent on the other end. Ours is a relationship of cues, physical and verbal. Often, I sing to him or click, whistle, tweet, hum or otherwise make silly sounds. We spend much of our time together hugging, and I shower the boy with kisses and raspberries whenever he’s in my embrace. Though Calvin is eleven, developmentally he is still much like a baby, mouthing his plastic toys and playing with them like an infant might. Michael tells me Calvin will not be much different in years to come. I think he’s probably right.

While watching my son, I thought about my mother again, thought back to the conversation I had with two of my four brothers and my sister regarding her care.

“Remember,” I said to them, “if Mom stops eating or drinking, don’t force-feed her or push fluids.”

I went on to explain what my mother-in-law, a former Hospice nurse, told me: that, when it comes to someone with Alzheimer’s, the refusal to eat or drink marks the start of the dying process, rendering digestion and intake of fluids uncomfortable, perhaps even painful, for a body that is shutting down. I recall my mother not wanting to get to this stage, the stage where she doesn’t really remember us, except fleetingly. But, under the care of my brother, she has managed to stay mostly upbeat and still loves life. At eighty-five, I hope she goes quickly in the night before she’s consumed by fear, confusion and panic, all hallmarks of late-stage Alzheimer's.

While bellying up to the bar the other night with Michael, I was doing my usual worrying about Calvin. He’d had a bad fall recently at school—landing square and hard on the back of his head—his balance and consistency, though improving, remaining precarious at best. I wonder about the future of his care, wonder if he’ll live with us until we are too feeble to carry on. I worry that no one else will love him the way we do. He’s a cute, affectionate little boy now, but what will happen if or when he becomes a man? What will happen if we’re not around? I’ve had fugitive thoughts about taking him with us when we die, just so he won’t have to suffer neglect or abuse at the hands of strangers who exploit the vulnerabilities of the disabled. I worry about who will give him his seizure meds on time—morning, noon and night—and if they’ll give him the right amount. I worry about who will make his cannabis oils, who will care about the side effects of the meds, who will change his diapers, shave his face, give him water, feed him, know when he is hurting, cuddle with him when he gets injured or feels bad. These woes are enough to last a thousand lifetimes, yet worrying won’t extend my life even one day. The best I can do is to love him and to click and clack and smooch and smack my lips against his pretty skin, like my mom did with me, and still does to this day, even when names escape her.

Mom, Calvin and me, December 2005 Photo by Michael Kolster


  1. These are issues I couldn't have borne to contemplate when my daughter was still a
    young child. But now I'm right up against them.

  2. It's impossible to worry about these things and impossible not to -- having these children is like a beautiful perversion of the "normal" paradigm. Impossible.

  3. My heart aches for you. As if the present isn't hard enough with your boy. I have learned so much about parenting disabled children from reading blogs like yours and Elizabeth Aquino's and I hadn't considered the future care of your children but what a worry that must be. I know worry does not change a situation but I can imagine that not worrying would be nearly impossible. Calvin is a precious being and I just wish he and your family the very best. I think of you and hope for that.

  4. What will happen to our daughter when we are gone is my biggest fear. We understand exactly what you are talking about.