Total denial

Lynn, my mother-in-law, died after about eight years with Alzheimer’s. I’d estimate that Lee has been declining with Binswagner’s for about three years, or a little longer.

Lynn realized what she had and, as the disease progressively engulfed, was able to make important decisions in the early stages: She voluntarily gave up driving upon realizing that remembering her usual paths from A to B wasn’t reflexive anymore; she allowed family members to help her with her finances.

Lee, on the other hand, is in a state of total denial that she’s dealing with an identifiable disease.

She’s convinced her hallucinations are real.

She’s angry with anyone who tries to help her. (Leave me alone! There’s nothing wrong with me!)

She’s depressed and has absolutely no self-motivation to do anything about it.

She’s lonely, but refuses to participate in any of the structured social events at her assisted-living facility (which is probably a non-issue at this point because she unpredictably “acts out,” embarrassing herself and everyone around her).

Denial. Refusal.

Right now I wish she had something else, but still had her mind.

Cookin’ at 3:03 a.m.

I have a Borla exhaust system on my Yukon, which gets me to about as close as I can get to that low-throated, “potatoe-potatoe-potatoe” awsome-sound of a Harley Davidson at idle. Accordingly, the ringtone and volume setting on my cell phone is such that I can hear it ring while driving with the radio on. What this means is, in the clear stillness of the middle of the night, at the deepest level of delta slumber, I will hear my phone when it rings.

As I did this this morning at 3:03 a.m.

Without my glasses I could see on the caller ID it was either Tom or Lee on the other end, which sent a chill through my body because, at their ages (87 and 85 respectively) it’s not the time of day for howdy-doody chit-chat. Something must be wrong and I’m not sure I’m ready to hear about it. (I’ve always thought that it’s going to be a middle-of-the-night call from my mother notifying me of my dad’s fatal heart attack.)

It’s Tom.

“Mike, mom’s up. She’s sitting in her chair. She says she’s going to go out and buy a chicken and fix dinner. What do we do?”

(Theoretically, this should be no big deal, but the facts are that they live in a high-rise, two-bedroom apartment with a kitchenette sans oven, etc., and their meals-and the food is good-are provided as part of their monthly rental fee.)

I’m relieved. Fortunately, they’re alive. I don’t have to spend the day in grief, planning for a funeral. Unfortunately, I’m not finished sleeping, but (metaphorically) have to get up, as a good parent must, and “feed the baby.”

I could hear her in the background, cantankerous and angry, lashing out at him for calling me and thwarting her; the old double-up game: Two against one.

“She just threw a magazine across the room at me.”

I asked Tom if he thought she was going to get dressed and actually leave the apartment. He didn’t think so. Would she go back to bed? He didn’t think so. I asked him to let me talk with her, which actually notched her anger up a level. He asked her to come to the phone but she refused. I couldn’t make out what she was saying about us in the background, but it wasn’t pretty.

“She just threw another magazine at me. It hit this time. What are we going to do?”

Even though the walls in this very nice assisted living facility are solid concrete, I could sense that the volume of Lee’s anger would accelerate to the point of interrupting a neighbor if not defused, so I instructed Tom to walk, without saying another word to her – not a single word – to the bedroom and go back to bed. . .and keep one eye open.

Walk away. Take yourself out of the situation. Leave her alone. Lay low. Listen to the quiet. I hope that is what he did.

I guess, since my day is starting very early (after this it’s impossible to go back to sleep), I should recount a little about Thanksgiving since it was a turning point for me emotionally.

As a side note however, I have to say that November 15th was a red-letter day for me because we were given a name for Lee’s problem (Binswagner’s Disease) which, almost miraculously, made everything so simple and easy to understand, finally. All of the quirks and aberrations, the irrational and-as of late-childish statements, now have a label. An understandable reason. Knowing this is so liberating, if you get what I mean.

Then, six days later while sharing a Thanksgiving meal, and armed with this newly obtained knowledge that explains her periodic, foolish behavior, I was able to arrive at and pass another milestone: She’s not coming back to being her wonderful, normal self. It’s time to get into high gear and do whatever I can to help Tom structure their transitions to the next “phase.” She needs 24/7 care. He needs respite from the demands of 24/7 care.

She’s not coming back because she is really not here much anymore.

She can’t carry on an in an extended conversation because she loses focus easily. She drifts in and out of hallucinations that, when they interrupt, drag her away from whatever it is she is engaged in at the moment. Others can’t have a conversation “around” her because she has lost her self control, and interrupts constantly. She forgets her walker; she forgets her dentures.

I’d like to think she forgets her new $5200 hearing aids, but I really think she doesn’t like to wear them, therefore won’t. Without them, every time you say something to her, and I mean every time, she yells ‘what!’ and you have to repeat yourself.

I’ve finally accepted the reality that she’s just not ‘her’ anymore; the incredibly funny, caring, nurturing mother I’ve known all of my life. Now she’s high-maintenance, demanding, demanding constant attention. . . just like a two-year old.

Now wonder Tom is exhausted all of the time.