A New Year of Alzheimer’s

More on the continuing progress (regress?) of Alzheimer’s into my Mom’s brain, and her being. Previous posts are here and here.

mom photo

Father, forgive me for I have sinned. This was the first trip to my Mom’s since Christmas Day. There are no excuses- she only lives two miles away- except one: it feels to me like more and more of a chore to go see her.

And it is.

Once she recognizes me when I come through the door, she is glad to see me. But there is no conversation possible anymore. The three events which she can hold in her mind at a time, are simply repeated over and over. (Did I already tell you about….? Yes, you did. But then she tells me about ‘it’ again anyway.) Each of the three events “happened” yesterday, no matter when they happened. Here, for your edification and enlightenment are the very shortened versions of those events:

* A woman with whom Mom eats, eats very slowly. The ‘young girls’ who work in the dining room want the woman to hurry, so they can go home and go their parties. Yesterday, they made the slow-eating woman cry.

*They– the “they” with no faces, no names, and no visibility- are taking the yogurt I bring to Mom from her refrigerator. Mom makes signs for the refrigerator door: “No More Freebies.” I tear them up and tell her to stop it. But, yesterday, they were at it again, so up went another sign.

*Her hearing aid doesn’t work- “Can’t we get a different one?” She needs new glasses- “I can’t see anything anymore.” I remind her, with pictures that I took, that we have been to audiologist and an ophthalmologist. She can’t see the pictures or hear what I’m saying.

In fact, she is voicing what is the god-damnedest problem about Alzheimer’s that I hadn’t known about, and which is, in fact, horrible. Just as her brain has less and less capacity to remember, her brain also has less and less capacity to make sense of what she is hearing and seeing (and tasting, feeling, and smelling). She can see and hear, but what she sees and hears is not being translated by her brain into anything coherent or understandable. So she thinks she is simply not hearing and not seeing, and those maladies, to her, should be fixable.

One of her relatives in Ohio called the home administrator to make sure my wife and I were telling the relatives the truth about Mom’s condition. These relatives are well-meaning, of course: they love the woman Mom was, too. But the woman Mom was, is not the woman Mom is! 90% of the time, that woman they knew is gone! One of them tells me they will be praying for a healing from God for Mom. My increasing bitterness over the disease actually tempted me to point out that out of the 30 million prayers for the healing of Alzheimer’s patients prayed so far, not a single one has been answered. It actually makes me want to wrench what hope may exist in another person’s heart, out of that heart! And that worries me, about myself!

I’m open for suggestions. I’ve looked around some of the Alzheimer discussion boards and I find no real hope for any better tomorrows. Worse, I find some of the same cliches that I used to get tired of hearing in AA meetings: “One day at a Time” and “Let Go, Let God.”

I can’t even cry anymore. And while I might sound angry, I’m not. I’ve just become passive to Mom, almost neutral in my feelings toward her.

And I’d rather be crying, or angry. I hate what this disease is doing to Mom. But I don’t like what it is doing to me, either.

Alzheimer’s Follies.. Mom, toward the end of the 2d Act

Mom’s meals are being taken to her room now at the assisted living home, instead of her being able to eat in the common dining area. During the last several weeks, she has taken to complaining- constantly and bothersomely to her table mates- about the ‘sameness’ and the quality of the food. The staff is used to those kinds of complaints from Alzheimer’s patients, but Mom has also stopped eating while she is griping, and she was on her way to starving herself right there in the dining room.

So she eats by herself now, or with whoever might be visiting. But she cleans her plate. If there is no one to bitch to, then the brain says, “Eat!”- I guess that’s how it works, I don’t know. And, truth be known (and it’s a hard truth to be known), I don’t care.

I go to see her reluctantly at this point. It’s still four or five times a week, but she thinks each time now that it has been months since she saw me last, so I’m beginning to wonder, what’s the difference? And each visit involves hearing about how the help is stealing her yogurt and cereal. And I’m hearing 3rd stage innuendos about where her pension and Social Security might be “disappearing to.” And the formerly spotless room now needs picked up with more frequency. And she’s been leaving the water running in the bathroom. And, and, and…

I go through the motions with her now, the motions of son to mom, however I remember those to be. Somebody tried to tell me that it was like a parent caring for a small child. That analogy doesn’t work, though. When our kids were at their bad mood worst, with full diapers, earaches, and spilled juice all over the floor, it was still easy to know that tomorrow was another day with all kinds of possibilities. Today, Mom’s tomorrow is just more of the same, minus a few thousand more brain cells.

For several years, I could at least laugh at the foibles of short term memory loss. Being asked if it’s cold outside for the tenth time in an hour, however, doesn’t compare to walking into Mom’s room and having to watch her slowly figure out “who that man is that just came into my room.” She hears what she wants to hear and then starts complaining about her hearing aid as soon as something she doesn’t want to hear is being said. Or she complains because the funnies in the paper aren’t funny anymore then tells me she can’t see anything and “you have got to find time to take me to the eye doctor/ ear doctor,” forgetting the two trips to each we’ve made in the past six months. (“Sorry, nothing we can do.”)

Dammit!

That’s all, just..

Dammit.

I watched the moon last night and it was so beautiful I had to stop..

From the movie, “Grand Canyon,” this tiny snatch of dialog:

Dee: “Jane, do you ever feel like you are just this far from being completely hysterical twenty four hours a day?”

Jane: “Half the people I know feel that way. The lucky ones feel that way. The rest of the people ARE hysterical twenty four hours a day.”

~~

There is this place, by Jacksboro Lake on a southwest bluff, where I have spent days (weeks?) over the past four years, losing myself and then having to go find myself again.

Last night, just after dark, I took my dogs there so that they would anchor me to reality in the way I knew I needed to be anchored. The moon was full; “full” as in “ready to give birth.” Maybe, I thought, to me. (Again)

I sat on the end of the most ergonomically awful concrete picnic table ever designed. I can’t sit still anyway, even in the most comfortable of places, but that place at the table was the perfect view of the moon itself and the slowly pulsing green-then-white guidelight of a nearby airport’s single runway. So I sat, and stared. At the moon, and into a mirror.

I am at a time of year, professionally, when a series of planning, administrative, and evaluation meetings are looming. I have said “yes” to a few too many other responsibilities in the community as well, and they feel oppressing- despite their value and necessity. On top of that, always on top of that- through all that, under and around all that- my Mom is dying slowly of Alzheimer’s, and the last few days have brought bad news and more bad news about her slow descent into a brain functionless body.

And my laptop is not working, so I am trapped inside walls, beneath a ceiling, and when I look up from this keyboard I see wires in the wall and not the sky or the neighbor’s soaring pine trees. And I need that sky, and those trees, as frequent reminders that I am not what I am feeling: a mere set of wires myself, in the wall of others.

We all have a God-enabled, generations-old template of Beauty in our souls. We recognize Beauty from a distance and are drawn to it. The particulars of that Beauty for each of us differs; there are those parts of it we all share, and there are those parts of Beauty which have been particularly with each of us, I think, from our conception.

We can stand in a crowd and collectively be in awe of a particular sunsrise or moonscape. Some will weep, others will try, try, try, to share with others how that Beauty within has been touched. Some will even leave litter or denigrating comments behind them after such an experience, but it is only because they are afraid of how they have been touched by the Beauty they try to culturally suppress. Even in their brash and ugly actions, they are confirming Beauty’s affectiveness.

Or, by ourselves, or with a small (always small) group of others, we might discover Beauty that is so particular, so meaningful only to us, that we will wonder why others are walking away in seeming boredom, possible confusion, or what we might mistakenly call their blindness. van Gogh saw such Beauty in the potato-eater’s rough lodgings. Picasso saw it the screaming of a dying horse. O’Keefe saw it deep within the folds- there!- of desert flowers.

I see such particular Beauty- a field of wildflowers, for instance- that I cannot help but wade into, touch as many colors as I can, watch insects symbiotically propogating, write snatches of poetry about in my mind, thank God for, get lost in to the point where my name and whatever else I hang onto that I ‘think’ is important become meaningless, and wonder why others won’t or can’t follow, or why others must talk about football scores or fashion, or.. why something must be wrong with me to react so crazily, so often, to these kinds of visions.

And then, I react in a truly crazy, not mistakenly crazy way: I want that field of wildflowers. I want to build a wall around it or put up No Trespassing signs. If others can’t/won’t appreciate it, then I’ll just go there by myself. Those kinds of ridiculous thoughts, I know, do not not come from the God-Image in me or anything else that is real, but from the culture in which I have also been immersed since conception. I want what I cannot have, allow myself to get frustrated because it is not mine, and then remember- back in the day- how I could pour brown liquids on the whole damn egoistic-societal-cultural mess in my mind and make it go away. For awhile. For a very short while.

No, I am not even close to going down that wet dead-end path again. But I have been warring with myself about where, why, and who I am, and I am trying to find a way to surrender. I am in a profession, and have made numerous other bad and good lifestyle decisions, that have caused me not to have deep roots in this place I live, or anywhere else. I will never have the experiences of rootedness that others around me have, and I would like to. I am subject to being told to move elsewhere in my job as well. I don’t think I can do that again. I need more permanence, more anchors; I don’t want to float away, from myself or anyone else.

And I don’t want to be watching my Mom die, day by day, while always hoping that tomorrow will be The Day.

I want to flee to the wildflower field. I want to be drunk on the colors there, and write about them on my laptop there, and turn to others and say “Look!” and know they will be excited as I am to be there, too.

I want I want I want what I cannot have in the way I want it, when I want it, and how I want it. I am a pistol-whipped, selfish Westerner and salt is being rubbed into my wounds by Beauty. But, oddly enough, I would have it no other way. And that is the realization I have come to and that is the understanding which keeps me sane, functioning and getting better.

My wants are unrealistic, artificially-inspired to some extent by my status as an American consumer, and even fanciful. Beauty is real. But Beauty is only to be perceived- owned!- on its own terms. Beauty is, has been, and will always be. I am the impermanent one in this relationship. How silly it is of me to try to squash it to the point where I can have it my pocket, or exclude others from sharing it. So I am embracing and holding onto that part of the wildflower field, or the moon, or my dog’s exuberance, which is mine to hold onto, and letting the rest thrive- for others to react to as they will, and not as I think they should.

I am, like Jane (far above), always becoming more and more comfortable in feeling hysterical. You’d think I’d have gotten used to the particular music to which my mind and spirit dance by now, but sometimes the beat is just too fast for me to keep up. Make of it what you will, but that’s where I’ve been, and I’m feeling pretty darn good, most of the time, for having been there. And for being here. Now.

~~

 

Also from “The Grand Canyon”:
Mack: Of course, it would also be nice not to feel bad most of the time.

Dee: Yeah, but that’s how you get yourself in trouble. By thinking how nice it’d be to be happy more.

 

Excuse me (again), while I deal with this (again)..

You’ve listened before (here), so I beg your indulgence again. It’s about my Mom.

My niece, her granddaughter, is getting married next Saturday. We had successfully (we thought) kept all information about the wedding from Mom, so that she would forget about it and so we would not have to take her.

But she found an invitation. Apparently it had been in that place where her hearing aids disappear to weekly, and from which they reappear after she makes call after call after call to my wife and me to help her find them. We look, we give up, then tomorrow they are back in her ears. Another of the endless Alzheimer mysteries.

So now, she wants to go to this wedding. She called six times yesterday to tell me that.

“Do you know who’s getting married?” I ask.

“Oh, you know, is it your cousin? You know, those people we visited one time,” she answers.

“Do you know when it is?”

“It’s tomorrow, I think, isn’t it?”

“No, it’s the 1st of September.”

“The 30th?”

“No, the 1st. Write it down.”

“OK, the 3rd.”

This morning she called with a terrible headache. She has “never had one this bad before” which is an almost daily refrain. I’m screaming into the phone, because she has lost her hearing aids- again: “There are aspirins in the top drawer of the dresser.”

“Let me look.” Three minutes later, she returns to the phone. “Where did you say they are?”

“In the top left drawer of the dresser. In a white dish.”

Another two minutes pass during which I can hear dishes being moved around, which are nowhere near the dresser. “I’m sorry, I just can’t find them.”

“I’ll be right there.” I hang up. I curse.

She stays about ten minutes away in an assisted-living home. I go into her room. I find the white dish sitting now on top of the dresser, and the aspirins are spilled everywhere. I give her two of them. She chews them and says immediately, “That’s better already.”

“See you later, Mom.”

“Thank you. I’m going back to bed. Do you have my hearing aids at your house?”

Driving back, I think the only way I can get through the next several months or years of this terrible goddamn disease is to consider Mom to have died about two years ago. I know-“horrible, horrible”- but this woman is not my Mom. She’s not the woman who made cakes and cookies for everyone in time to send them for birthdays, Christmas, and out-of-the-blue days when she just simply felt like saying, “I love you.” She’s not the woman who would send cards to a hundred different people, always on time, or who would arrange Monday lunches at the church for the 50-60 people who just needed a place to eat, in community with others. She’s not the woman who drove every Saturday to sort out clothes for needy people at the welfare building, or who visited shut-ins almost every day, or who would walk two miles every day in the woods with neighbor ladies.

I miss that woman- my Mom- terribly. And I’ll treat this woman who is left lovingly and with respect, but I just don’t know what to do some days. I want my Mom back, and I know she can’t come back and I don’t want this woman to suffer and so I am left to pray and to hope for that which sounds so awful that I can’t even write the words here.

But it’s true, and it’s a real prayer..