A Pat on the Back

The other day, one of the newer residents (I'll call him "Joe") at my husband's place was having a very difficult time. He was extremely agitated, wanting his wife to come get him, wanting to go home, threatening to take his own life, break things, steal booze and drink himself to death. Loudly. Desperately. It broke my heart.

Joe is usually a sweet, sweet man, though he's been known to toss his cane across the room in a moment of frustration. Sometimes, when he's disoriented, he sees me across the room, points at me, and says, "I know you!" He's conversational (obviously) and always greets me with a smile and a cheerful "Hello!" He can be found playing dominos and chatting away at a table with some of the more abled residents.

But he's having a time of it adjusting to being away from home, when he remembers he isn't home. And, of course, he desperately wants to be with his wife, at home, during those moments. He asks where she is, when she'll be back, gets tears in his eyes. Not everyone is as crazy as I am; most people place their loved one in a care facility at the start of aggressive agitation. I don't blame them, because it can be pretty scary. And dangerous.

Anyhow, Joe, my husband, and I were all in the "quiet" living room. Since I have a pretty good relationship with Joe and was feeling deep compassion, I went over to him as my husband sat on a nearby couch and softly "chatted him down from the ledge," as it were, with my hand gently on his shoulder the way I always do when speaking with him. As Joe began to calm down, my husband (who had by all appearances been slouching on the couch taking a nap in oblivion) suddenly stood up and walked slowly in our direction. He looked me right in the eye, gave me a half smile, and patted me on the shoulder encouragingly as he passed by.

Now, you can think whatever you like about the situation. Maybe he does this all the time with the caregivers. Maybe he didn't know who I was at all, but I do know it was an "atta girl." He was offering me support and telling me I was doing well. It was a gift, another precious moment.

His body and his mind might be failing him, but there is nothing wrong with his spirit.

How to Discourage a Caregiver

This is not a post about my husband's illness, necessarily. Rather, it is a post about caregiving. More specifically, it is a post about what to do if you'd like to encourage me as his caregiver. Or, actually, what not to do.

There are some pretty terrific films out there about people with Alzheimer's Disease, people who've known people with Alzheimer's Disease, people who are living with people with Alzheimer's Disease, people who visit institutionalized people with Alzheimer's Disease, and so on. The Notebook, Away from Her, and Still Alice come to mind. Please don't suggest that I see the films. In one way or another, I am living them. They are bound to rip my heart out, and I'm sure that's not your intent. Your intent is to show you care, to let me know you were touched by the films, to tell me you want to understand. But unless you are living or have lived my life, you cannot possibly understand. And that is okay. You do not have to understand in order to support me and encourage me.

Along the same vein, I know you are trying to let me know you feel my pain when you tell me devastating stories about your aunt's or uncle's or father's or mother's struggles with something my husband and I aren't dealing with yet. And possibly (because hope springs eternal) will never deal with. Please know that while I appreciate your efforts to empathize, those stories are not helpful unless they pertain to a valuable resource I haven't discovered. You will generally know you are being helpful when my countenance brightens and I ask you for more information.

And speaking of resources, again, I really do appreciate your desire to be caring when you send me articles about medical studies, discoveries, vitamins, oils, diets, cleanses, and all sorts of miracle treatments. Someday, one of them just might be "it." In the meantime, it's a bit demoralizing. It makes me feel as though I'm not doing enough and have possibly missed an opportunity, even though I've read the studies, use the vitamins and oils, and am careful about our nutrition. My husband's neurologist is part of the research team at UC Davis. She specializes in Alzheimer's and dementia. She is fantastic and fabulously knowledgeable. She has told me that if there's anything at all even vaguely promising coming down the pike, we will be the very first to know.

But if you personally know someone who's been diagnosed with early-onset Alzheimer's and has recovered using one of the miracle treatments, by all means, put me in touch with that person. My countenance will brighten, and I'll ask you for more information!