By Susan Tomlinson

A month ago, following a long struggle with Alzheimer’s, my father passed away. A few days after the funeral, a mysterious box arrived in the mail. Inside it was a basket of unlabeled bulbs and a short note of condolence.

The gift was from my friend N, a fellow gardener and birder. A few years ago, N and I started getting together a couple of times a month at a local barbecue place, partly to chat about things like prairie restoration and what’s on the bird hotline for the week, but mainly to gossip, rant, and giggle about the doings at the university where we both work. Over the past couple of years, however, our talk has turned more and more to Alzheimer’s, since N’s mother has also been diagnosed with the disease. Oh, we still rant and giggle a-plenty, but there is an underlying sadness to it whenever we talk about the particular challenges we face as caregivers.

Alzheimer’s is so much more complex—and insidious—than a “memory problem.” If you want to know about the symptoms, or how to rate the disease’s progression, or even the latest research on causes and prevention, there are plenty of resources around. And it is good to know these things. Arm yourself with information, I’ve always believed.

But honestly? No website, magazine article, television documentary, or book can truly prepare you for the journey on which you will embark as an Alzheimer’s caregiver. And, again speaking honestly, it’s probably better not to know in advance just how harrowing that journey is going to be.

Kindness leads people to ask how things are going. But I find myself reluctant to talk about the particulars, even with my good friends. It is simply not the stuff of casual conversation. Like a veteran of a long, protracted, and bloody war, I only really open up about it with people who have been to the same hell. With them, in fact, few words are actually needed to describe or explain. We speak in a kind of soldier’s shorthand: confusion; paranoia; memory drugs; shoes without befuddling laces; blueberries; the legality of putting GPS tracking devices in our parents’ cars without their permission. To speak any one of these is to say volumes about hope and despair.

And with each other we can find relief in laughter. We laugh together without guilt about the surreal absurdities that spring from an Alzheimer brain: burglars who sneak into the house at night to steal socks; city workers who change thermostat settings by remote control; the odd desire to cook pecans in a coffee pot. Fellow caregivers know that it is not a laughter born of mockery, but of a peculiar mix of love and sadness. It is like the barbecue over which N and I share these stories—tart and sweet all at once.

But one thing we don’t usually do is offer each other much in the way of advice, because we have learned that there is little advice to give. We desire to fix the situation, but the situation is untenable, with solutions thwarted at every turn, and in the end there is nothing really to be done. And so we settle for knowing that others before us have been on this strange adventure, and survived.

N’s note that came with the bulbs didn’t say much. We’d said it all already over those plates of tangy pulled pork. She wrote, “When these have finished blooming, you can plant them in your garden. Then every year when they flower again, you will think of your father.”

This week the tulips bloomed.

Image source: author's collection.

Susan Leigh Tomlinson blogs regularly at The Bicycle Garden. She has a forthcoming book, How to Keep a Naturalist's Notebook (Stackpole).

Explore More: Useful Resources for Alzheimer's Caregivers

Being an Alzheimer’s caregiver is difficult, but you don’t have to carry the burden alone. In addition to my family and friends, I have been amazed and touched by the many times I have been helped by complete strangers who recognized—perhaps through some experience of their own—when I was in need of assistance. Many towns and cities have local support groups available, too, and these can often be found by an internet search or looking in the phone directory.

Informational resources are also readily available. One of the best documentaries about caregiving for a parent stricken with the disease is Deborah Hoffman’s very moving and poignant “Complaints of a Dutiful Daughter.” I cannot recommend it highly enough. A DVD may be found in your local library, or ordered online. More information about the documentary can be found here: http://www.librarymedia.org/aging/Titles/complaints2.htm

Understanding what is known about the disease itself can help you prepare for changes as they occur. The best jumping-off place for this information is The National Institute on Aging’s website: http://alzheimers.org/

And finally, to assist you in creating your own caregiver’s group, check out “Lots a Helping Hands” at: http://www.lotsahelpinghands.com/