Alzheimer’s. Enough Already.

Several months ago, my dad’s nursing home roommate died. No one called to tell me. Well, they called, but only to let me know my dad would be getting a new roommate. 

“That’s fine,” I said. “But, why’s he getting someone new? What happened to Mr. Grant?” 

“Oh…well. Sadly, he passed away a few days ago.” 

“My God,” I said. “I just saw him!” You know. As if that mattered. 

I hung up the phone and thought about this, because I am nothing if not an over-thinker. What if I hadn’t asked? Weren’t they going to tell me? Didn’t I deserve to know? 

I didn’t know Mr. Grant, of course. In general, it’s very hard to know a person once they’ve reached the stage where they need full-time dementia care. But I said hello to him all the time and he occasionally said it back. I listened when he muttered to himself about someone who was “always too busy” and “why don’t I just dig my own grave.” I did not share my dad’s cookies with him, because he was diabetic and wasn’t supposed to have them. I suspect he helped himself to them anyway after I’d gone. It’s possible that I had a hand in killing him, by bringing the cookies in the first place. I choose not to dwell on that.  

These days, every time I go to the nursing home, I take a mental roll call. There’s Bert, who sits by the window and never fails to ask whether my kids are playing baseball today. There’s Grace, who always wears a winter coat and only wants grilled cheese for lunch. Over there is Richard, who thinks he’s married to Margaret except when his real wife is there, then he’s married to her. And here comes Annemarie, who is one of my favorites. Recently a guy was shaking the back of my dad’s chair for no apparent reason, and Annemarie walked over and stood in front of my dad, leaning so she was right in the guy’s face. “If you don’t leave him alone,” she said to the guy, “I will knock you on your ass.” Annemarie is about 84. The guy, either chastised or frightened, walked away. 

Days go by where I don’t see one of them, Annemarie or any of the others, and I start to worry but I feel weird asking. Like maybe HIPAA prevents me from inquiring as to whether a person is still alive. I don’t know. Now that I think of it, I haven’t seen Stevie and his Scooby-Doo doll in a while, nor have I seen Mr. Gordon, who says hilarious things and then turns around and threatens someone’s life and/or limbs. Once, I got there and the person I couldn’t find was my dad, but then I located him riding an exercise bike in the physical therapy room, because he is like Michael Myers and really cannot be killed. It is unsettling to say the least. 

There are new people coming on the floor all the time – honestly, it gets to where a person can’t keep up. I did make friends with a woman named Elizabeth, who has very nice hair and who told me about the time Mario Lemieux visited the nursing home. Which never happened. There’s another lady who throws entire drinks on nurses and aides and then screams at them to bring her another. “I said, bring me more water, bitch!” Her words, not mine. You can’t help but think she was always like this, that she beat her children with wire hangers and threw skillets at her husband when he dared stop off for a drink after work. But the fact is, you have no idea. She may have been the brown-sugar-scented grandma of your dreams. This is dementia. 

It’s Annemarie who I wonder about the most. She’s a busybody and a flirt, and she’s not afraid of anyone (hence the “I will knock you on your ass”). She tells me often that I don’t need to worry, that she takes care of my dad when I’m not around. “I love him,” she said. When I expressed my appreciation for this, she followed it up with, “Listen. What I am saying to you is that I am in love with him.” She also told me once that she’s 94 years old (she isn’t) and that her mother, still alive, is 130. “People can’t believe it,” she told me. “I’ll bet,” I said. 

I can’t imagine that Annemarie could die – die! – and I would never know it.  

That’s it. I’ve made up my mind. Next time I go there I’m going to ask, at least about Stevie for sure. Stevie once told me that when he was young he’d been hit by a train in Oakmont, but he didn’t sue anyone because he’d been running numbers at the time and worried about getting in trouble. It had the ring of truth and so I believed him, even though I’ve watched him “feed” Scooby-Doo with my own eyes.

Last but not least, there’s Ellen. She doesn’t say much. She’s small and resembles my mother a bit, and once my dad said she was his girlfriend. I think he’s since forgotten the relationship and I’m pretty sure she never knew about it in the first place. Her husband was with her one day, and he told me they’d been married for 58 years. Ellen’s face lit up at this.

“We’re married?” she said, awestruck.

“We are,” said her husband. “You’re my wife.”

“Oh!” I’d never seen Ellen smile before, now I didn’t think she’d ever stop. “Well,” she said, “it’s so nice of you to come and visit me.”

My family and I will participate again this year in the Walk to End Alzheimer’s. You can join our team or make a donation here. We probably won’t cure Stevie or Annemarie or the water-throwing lady or my dad. All the same, I’m pretty sure future generations will thank us if we can put this nonsense behind us once and for all.

It’s Mother’s Day. Don’t Tell Daddy That Mom Is Dead.

I made the executive decision, back when my mom died in December. “We’re not telling him,” I said, regarding my dad. Some people thought that was weird. They weren’t divorced, or estranged, or anything that might explain why a man wouldn’t need to know that his partner of 53 years was gone. That he was now a widower. My parents were still married. He still liked her. He still asks for her, sometimes.

“She’s sleeping,” is what I tell him, every time.

During the funeral, I kept thinking of him, sitting there in a nursing home, completely unaware of the death of his wife. Of the fact that we were sitting in a church, crying as the priest said nice words about her. Of the fact that his daughters had lost their mother. Of anything. Maybe that’s a good thing about Alzheimer’s Disease – you can let them believe whatever seems best.

“Mummy’s sleeping,” I say.

The other day, I was sitting with him in the dementia unit lounge and he said to me, “Where’s Mummy? Is she still sleeping? Wake her up, she was supposed to bring me something to eat.”

I said, “Oh, let’s let her sleep. She’s tired. Your lunch will be here soon.”

I wasn’t lying about the lunch. It was there, within minutes. He ate most of it, and did not ask about Mummy again.

However.

This Mother’s Day, I wonder what she would think of all this. If there’s one thing I know about my mother, it’s that she sometimes enjoyed seeing people suffer. She loved the show American Ninja Warrior and one of my kids once said, “That’s because she likes to see people get hurt.” We had a good laugh about that. I even told it to my mother, and she laughed about it, too. Now, when it rains, we say that Grandma is in Heaven competing on the show. And just fell in the pool because obviously, you never make it through the course on your first try.

I don’t think she’d want us to cry and sob and be overwhelmed by grief forever, about her death. I do, however, believe she’d want the full impact of it to be felt. Especially by her spouse, who by rights should miss her at least as much as the rest of us do.

Instead, where Daddy is concerned, her death was a non-event. Nothing to see here. Mummy’s sleeping.

So on that note, I’m composing a little note to her, to take the place of the Hallmark card I’d have normally given her for Mother’s Day. Here it is.

Dear Mom:

First of all, happy Mother’s Day. You did a good job. I learned from the things you did wrong, and the things you did right were so eerily, perfectly right that I still can’t quite get my head around how you did it. Allowing me to read at the dinner table, for example, my book propped up around my plate and maybe even hiding half my face, when I was younger. This is a habit that has served me well, particularly when I choose to eat alone in public with my book propped up around my plate. Not many mothers would permit this type of behavior. You told me you figured that at least I wasn’t doing drugs at the dinner table. This is a logical leap that I still can’t follow, but thank you for it, and for all the other exactly right mothering you did.

Second: no. We have not told Daddy about you and we’re not going to. But the nurses have said they think he knows, anyway. He gets teary-eyed when he hears certain songs, and when he asks, “Where’s Mummy?” you can see a little more than just your average-level curiosity in his face. Also, the fact that he asks “Where’s Mummy?” at all is a pretty good testament to your legacy. He doesn’t ask about anyone else. He still expects you to deliver his meals. I like to think you are still taking care of him, from wherever you are, and so I let him think it, too.

Also, I like to imagine the reunion, when he joins you in the afterlife. “Jesus Christ, Maureen,” he’ll say. “When did you die?” And then you’ll laugh, and tell him how it happened, and then he’ll say, “But why didn’t those assholes tell me?”

Then you will both laugh, and then you’ll probably go to get him something to eat.

The only bad news is that I’m pretty sure he will beat you at American Ninja Warrior. But on the bright side, no one ever completes the course on their first try, so surely you’ll get to see him fall a few times. That will be fun.

Third: I love you. We all do. Rest in peace.

And happy Mother’s Day.