Crime Scene

I lost my temper with Mom today, but she doesn’t know it, because I’ve learned to keep these things to myself. So it can be our little secret. Okay?

Here’s how it happened.

Mom believes, every single day, that things have been stolen from her. This is a fairly typical symptom of dementia, and it long ago stopped surprising me. The good news is that most days, nothing is actually missing. She believes a basket of clean laundry has been stolen – she’s absolutely sure of this – but the basket is there in her closet, and the clothes are either in her drawers or in my dryer.

My sister and I don’t point out anymore that she’s wrong. That would be cruel. We validate her feelings: Oh, Mom, that’s awful. You must be so upset. This approach allows her to save face, and us to save our breath. Her reality is reality; there’s no point in arguing.

And when you think about it, people with dementia are experiencing loss. My insightful sister pointed out years ago that the missing laundry is a metaphor. Mom is missing something: not clothing, but something equally personal. She’s missing her sense of control, her belief that everything is in place. Parts of her brain have actually been stolen, embezzled by the firm of Plaque and Tangle, LLC.

There are days, however, when actual physical items disappear: usually her hearing aid, glasses, or room key. I keep spares of all three, because these are not things she can easily do without. After angrily denouncing the staff of her assisted living for stealing her belongings, she agrees to use the spare. And here’s the kicker: within a few days, the missing item turns up. I go to visit and see that the original hearing aid is in her ear, she’s wearing her regular glasses, or the key is in its accustomed basket on the bookcase. I do a little sleuthing to recover the back-up item, and whisk it away to my house. Mom never once says – or even realizes – that everything’s back to normal.

You see what’s happening, right? She’s hiding things. This, too, is typical of dementia. She probably puts these crucial items someplace safe, someplace where a thief won’t find them, and then loses track of them herself. Or, more infuriating, she may actually hide them in order to test us. Will we believe her when she says they’ve been stolen? Will we take her seriously? Or will we dismiss her as a crazy old woman?

I don’t believe for a minute that Mom is doing this consciously, but I think she might be doing it. As surely as a three-year-old with icing on her chin will deny eating the last cupcake, an 89-year-old with dementia will do whatever it takes to maintain her dignity. The difference is that you can teach a three-year-old that her dishonesty has consequences. The person this far into dementia can’t make that connection (though I will argue passionately that she can still do many other things well). So you have to roll with her fiction. If you want to live peacefully, there is no other choice.

A couple of days ago Mom’s key was missing. Stolen! Taken from her apartment on a basket of clean laundry! And the management refused to make her a new key! The whole spiel. Wow, I consoled, that’s awful. You must be so upset. I brought her over to my house for a truly wonderful visit: we had tea, looked at books, sang songs. When I took her home, I slipped the back-up key, on its bright, plastic-daisy ring, into the pocket of her walker, trusting that within a week or so the old key would turn up.

Sure enough, there it was today in her pocket. The missing key. The stolen property. The loot. Less than forty-eight hours after the crime.

I found the spare key and quietly slipped it into my purse. And for some reason, maybe the slight cold I’m fighting off, I lost my temper. No-one noticed; it was quick, and it all happened inside my head. But it happened. You devil, I thought. You had that key all along. Why do you do this?

There’s no answer. She does it because she has dementia. It was a good reminder of how frustrating this is, how angry I used to be all the time, how hard it must be for people who never get a break from caregiving. How important it is to step back, rest, breathe. Laugh.

Perspective is everything. Usually mine is pretty good. But some days . . . some days it gets hijacked. Stolen. Some days, my good attitude goes out on basket of clean laundry. Thank goodness it tends to show back up, exactly where I left it — if only I can remember where that is.

 

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Word of the Week: Anger

IMG_2901Confession time.

I remember a day about three and a half years ago, when Mom had been in Atlanta a few months and I was learning how to deal with her dementia. (I still am, but the learning curve was very steep at that point.)

I had taken her somewhere (church? dinner? a park?), and it had been a long day. I was tired. Frustrated. So was she, I suppose. As we walked from the car toward her assisted living, she started reciting with gentle resignation how sad she was about moving away from home. It was a litany I would come to know by heart:

“You girls don’t have time for me. I took my mother for a walk every day, and brought her to my house after church every week for Sunday dinner. But you don’t do those things for me. You have such busy lives . . . .”  Et cetera.

On this particular day, my sister was out of town. My brother and his wife were also traveling, and weren’t catching their phone calls. I hadn’t found a support group or counselor. I felt totally alone.

I helped Mom into her living room, and then I let her have it:

“I take you to church every Sunday, and I take you out every day! You don’t remember because you are losing your memory! But I do plenty for you, and so does my sister. Don’t you DARE say we don’t take care of you the way you took care of your mother, because we do!”

That may not be an exact quote (I don’t trust memory anymore), but that’s what I was feeling: hurt, defensive, and furious. And I made sure she knew it.

Did it help?

Oh, hell no.

Maybe it felt good to blow off steam. But Mom’s face turned ashen, and I was quickly overcome with shame and regret. She probably started to cry; I don’t remember. She was horribly upset, because she had made me angry and didn’t know what she’d done. And I was shaking like a leaf, because I’d lost my temper and accomplished nothing.

Fortunately, I was able to leave her in safe hands and go home. I reached my brother and sister within a few hours, and they talked me off the emotional ledge. They understood; they’d been there. And, amazingly, Mom and I got through it. Once I calmed down, I came up with a version of the incident we could both live with: I told her that she hadn’t done a thing to make me mad. I’d just had a bad day and needed to vent. Thanks to her dementia, she didn’t remember exactly what I’d said, only that I’d been angry. So she took the high road: 

“Well, honey, I’m your mother. Your feelings are always safe with me.”

Poof! In a little sleight-of-hand illusion called the “therapeutic lie,” Mom became the hero, and peace was restored. She’ll never know how furious I was. She’s long since forgotten the whole thing. But I haven’t. I learned a valuable lesson that day: when dealing with dementia, I’d rather be at peace than be right.

I still get angry. I may never stop being angry at the disease, at what it’s done to my mother, at the gap between what she needs and what our culture currently provides for people like her. I just try not to take my anger out on her. Like me, she’s doing her best to deal with this dementia.

Unlike me, she can’t take a break from it.

Dangerous Territory

I try hard to stay positive about my mom’s condition, which, if you don’t know, is some form of dementia. I try to focus on how easy my situation is, compared to other people’s – people who are watching their life partner slip away, or people whose demented parents have moved into their homes for full-time care. Compared to them, I’m golden.

So why do I feel so angry?

You may not want to answer that, screams my internal editor, suddenly on high alert. Stop typing now! Get up and make another cup of coffee, or wash the dishes, or put away the laundry that’s been sitting on the sofa since Sunday. Play with the cat, for God’s sake. Do anything but write about anger.

I need to write about it. I think about it all the time. I question it. I wrestle with it. I can’t make it go away. But I’m afraid that if I admit to it publicly, in my sweet little blog with the pretty pictures and the fond memories, you’ll think I’m a bad person. And that’s what matters, right? What other people think?

Ah. Now we’re getting somewhere.

Girlfriend, you better stop right now. This is dangerous territory.

Yes. Yes it is. And we’re going in.

Tomorrow.