Update- A New Year of Alzheimer’s

The post below needs an addendum, because things have changed. Not the world, not Mom, not her prognosis. It’s me. Having written what I wrote, I got some advice from someone who’s been through a similar parental illness, and it has made a world of difference. I share it here for two reasons:

1. So you don’t have to worry about me going insane.

2. So, in case someone reading this might be going through a similar situation, you can perhaps benefit from my own mind-shift.

I’ve given lip-service and lip-service only (I now realize) to the fact that Mom will never get better- not in the remainder of her life, not for a single day. There may be moments when her sense of humor or sensory abilities are better than other moments, but- overall- there is a decline in her physical brain and that will continue.

My own frustrations with that situation were born, I know now, from my stubbornness in letting her go. I wanted, if I could, to keep her the way she was, in whatever small ways I thought there were to do that. Thus, I would get upset at her for her continual accusations that staff people in the home are stealing her refrigerator goodies. I’d tear down her hand-written sign of the day, warning them to stop taking stuff, and tell her upsettedly to stop that nonsense!

I’ve been doing that for two months now and it hasn’t helped at all, nor will it ever help at all! Therefore, my advisor suggested, I might try just going along with where my mom’s mind is, instead of trying to push and and pull it back to where I want it to be. And, that attitude has worked for me for three days in a row!

On Wednesday, I put the sign which I had torn off on Tuesday, back up on the refrigerator (as I was filling it with more goodies). “If they take these yogurts, tell me, so I can replace them,” I told her. She was smiling as she promised to do that. So was I.

Her complaining about ears and eyes? “Let’s talk to the Doctor about that the next time we go there,” is my now already-much-practiced response. Instead of trying to prove to her again, to no avail, that we have been to both ear and eye doctors very recently, I’m simply allowing her brain- as it exists this day, in these moments- to be that to which I respond. I’m not trying logic anymore with the mother I used to know, in order to get her step forward from some “hiding place.”

There is no such hiding place, of course. Mom is not making a conscious decision to be suspicious, forgetful, frustrated, or weird. That’s her brain. And there’s not a thing I can do about it other than humoring her, agreeing about everything with her, and keeping her supplied with shelter, food, medications, and my..

daily presence. You read that right- I’ve been there daily for the last three days, and have left each visit in a good mood, not feeling frustrated, and with at least a little hope for myself. I had been losing that, as I knew I was losing her.

So, I’ll be supplying Mom and the entire county (if that’s what she thinks) with snacks for as long as she is able to go the refrigerator and get them. I’ll put more flowers in her room, and more of the halfway-pleasant me back in her life.

I’ll let you know how it continues to go, as a way of saying “thank you” to those who could see what I wasn’t seeing.

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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.