The three best resources I found on Alzheimer's were "The 36 Hour Day" by Nancy Mace, "Creating Moments of Joy" by Jolene Brackey, and the blog Alzheimer's Reading Room, which is a nearly daily wealth of information and tips about the disease and caregiving. That's a trio of resources I recommend to anyone who has a family member with the disease.
From all my reading I thought I was aware and prepared for each stage of the disease, including the times when the person becomes difficult or anxious. I forgot about the difference between intellectual readiness and emotional readiness. You can know that something is coming, and how it's going to be, and research every detail of it in advance, but it doesn't prepare your heart for the emotions of the event.
I knew that eventually my mom would forget who someone was in the family. When that first person was my dad, to whom she has been devoted all my life, I cried. Couldn't she have forgotten some other relative first? Why the most important person in her life? It hit me hard.
Yesterday dished up another milestone: I saw my mother in a full-blown fit of obstreperousness and hatefulness. And I was included in those who were the brunt of it. I knew her caregivers had dealt with some tough times, and the nurse at the hospital had told me that morning my mom had been combative and had yanked out her IV. But personally I'd not seen anything more than grumpiness from my mom; she usually is happy to see me and sweetens up and calms down when I walk in.
So yesterday morning after I arrived at the hospital, the nurse wanted to check on a dark spot she had glimpsed on my mom's backside. She asked me to help get my mom to allow that.
And there it all began. When I asked my mom to let the nurse take a look, her face twisted up and she immediately went into a full-blown tantrum. I was shocked. "I will not." "Leave me alone." "Get out of here." Her body was rigid and there was no way, nohow, that my mom was going to comply. Not with anyone.
I tried logic with an explanation of why the nurse needed to see the spot, voicing what might happen to her health if it got worse. I tried getting stern as she used to do with me when I was a kid. I tried the word "Please." Each of those was a mistake. They made her even madder. I should have known from the reading I've done. Leave well enough alone and come back later. It's not that urgent. But I didn't.
The nurse and I briefly conferred and decided it didn't have to happen right now. Mama was in a pout, and hearing us talk about it made her even madder. She pinned me with a hateful glare--something I have never, ever in all my life caught from her. My beautiful, always-professional Mama had turned into a horrible person, and I didn't really understand how that had happened, nor why I couldn't change it.
And then I confess, I deepened my error of trying to use logic and words. Once the nurse was gone, I leaned close to my mom quietly and asked, with some emotion, "Mama, why are you being so ugly? I have never seen you do this before. When you were a doctor and you asked a patient to do something, you expected them to comply. Now you are the patient, but you won't let the medical people do what they need to do. I don't understand that."
Oh, that just made her spitfire angry. And maybe sad, too, now that I think of what I saw. She glared at me. If looks could kill, I would've been dead on the floor. She was wordless again for a moment, but oh-so-angry.
That's when I felt the tears start to flow. I moved away and sat down on a chair in the corner, sniffling. It was all just so awful. The nurse returned, and we discussed the situation, with me crying and telling her this wasn't like my mom, and that she had always been such a professional woman. Better to talk in front of someone than behind their back, right? Oh, my; I was so dumb! Not smart to do this in front of an Alzheimer's patient in full rebellion.
"Stop talking about me." My mom hollered. "You get out of here. Both of you. Just get out. Go talk somewhere else. Leave me alone." Her ability to articulate her thoughts, which has been diminishing over the past year, was suddenly back in full force. And at high volume.
The nurse and I looked at each other and agreed silently that we'd move out into the hallway.
And now I am left licking my wounds. I've always been able to work my mom around to acquiescence and cheering up better than anyone, even through this whole disease. No more. Alzheimer's disease takes your loved one away, and that's sad. But I think what is even sadder in this moment, is that I'm understanding that it not only takes them away, but it can turn them into someone else, someone quite monstrous. And frankly, I want to flee far away when she gets like that, to pretend that it's not happening and my mom can't become monstrous. It's easier to bear up with a mom who has always been kind and helpful and professional and is now quietly fading, than it is to bear up with a mom who is now wailing and roaring and shouting aggressively for me to get out.
I don't have any other thoughts right now. Just dealing with the heartbreak.
