When my Grandpa died about nine years ago we didn’t discover until a few months later that my Grandma had been in the earliest stages of dementia. There had been a couple signs, in retrospect. For instance, at the rehearsal for my mom’s wedding we were walking out to our cars to go to dinner and my Grandma said, “Are we going to do the rehearsal now?” That seems like a big ol’ red flag now that I think about it. But my Grandma has always been one of those people who goes a mile a minute all the time. She has always asked questions and not fully listened to the answer, so I’ve spent a lifetime telling her things more than once. It seems so foolish that I could not have grasped how weird it is that she asked if we were going to rehearse the wedding when we had just finished doing that about three minutes before. But I didn’t.
Before Grandpa died I thought it was so sweet that they were spending more time together, going places together. That she would drive her little white Honda Accord with her spastic boxer, Max, in the front seat, and my somewhat over-sized Grandpa, invariably dressed in jeans, a striped rugby shirt, deck shoes, a windbreaker and a sun hat, squeezed in the back. But when he died we all realized that the reason he had been going everywhere with her is because she couldn’t always remember where she was going or how to get there. And after his death, her cognitive slips rapidly became more pronounced. Over the months we began leaving her notes about what meal was next and what time to put her pajamas on. My cousin bought her car and an extraordinarily kind woman was hired to take Grandma on errands, come by the house each day for light housekeeping, and to help make sure she ate and took her medicine. Have you ever tried to get a 3-year-old to swallow a prenatal vitamin? No? Well that would be considerably easier than convincing my very hard-headed and frustrated grandmother to take two pills the size of ibuprofin.
When we started worrying that she would set the house on fire by leaving a Revlon Cherries In the Snow-stained cigarette burning in the kitchen, or the bathroom, or the bedroom, and fretting that her dog would pull her down on her steep driveway and break her hip, she was moved into assisted living. What a relief. She was safe. She was supervised.
Here’s an incredible side story, and one of my all-time favorites about my grandma: My grandma started smoking at about age 18. She chose Marlboros because the red and white package looked cute in her purse. In my memory she tried hypnosis, going cold turkey, weaning down one cigarette at a time and even this very gross thing where you had to keep burned up butts in a baby food-sized jar with a a little water in it, to quit. The deal with that was that when you opened the jar and sniffed it the smell of the cigarettes was so awfully pungent that you would be turned off by it and not want to smoke. But not Grandma. She would pick that jar up and stick her nose in like a toddler smelling a summer peony and breathe deep. It was beyond gross. And none of it worked.
She was still living at home and still (at about age 84) smoking, when her caregiver took her out for a few groceries and lunch. They were driving past a gas station when Grandma asked to stop so she could run in and buy some cigarettes. Her lovely caregiver, in a moment of utter brilliance, turned to her and said, “Why Mrs. Brauer, you don’t smoke!” My Grandma simply said, “Oh,” and has never smoked again.
So there’s the upside of dementia. You forget your worst habits. But sometimes it can magnify them. And that passage of time between the first onset and the point at which your loved one does not know who you are is brutal. For them it is terrifying and frustrating to a level I can only imagine. For you it is terrifying and heartbreaking. You can’t be with them every second, but you are afraid to leave them. You don’t mind telling them your husband’s name seven times in 20 minutes, but if they ask you one more time you think you’re going to scream. You realize they never get sick of CNN because it’s all new, all the time. You lose them long before their body is gone from this world.
Here’s a confession that is really hard to make. Since Grandma has been in assisted living I have never visited her by myself. I don’t know what to do. She doesn’t talk much. She doesn’t know who I am. Even when she still knew that I was someone familiar, but didn’t know my name, it freaked me out to be alone with her. It was like she was there, but not there. And I’m pretty okay at small talk, but not with someone who can’t participate. I rationalize this by telling myself that she doesn’t know I don’t visit her because she no longer knows me. But I know and I feel guilty about it.
Over the past few years we’ve gotten a few false alarms about her impending death; that phone call where my mom is weepy and is pretty sure it will be soon. About a year ago Grandma became suddenly listless, with no appetite. She was sleeping a lot. We were sure this was it. But it turned out she had a UTI, and a good dose of antibiotics and couple days later she was in the dining room eating chocolate chip cookies. Nine months ago she became so withdrawn that my mom picked out her funeral outfit (my Grandma’s, not her own) and delivered it to the funeral home. My sister and I thought this was a somewhat extreme preemptive measure, but since I don’t visit her what do I know? That was nine months ago, though, and the funeral home hasn’t called back to ask for the outfit to be picked up, so maybe this is a thing I just don’t know about.
I’ve learned to not get worked about the false alarms. Of course she could die any day. She is 90. She has late-stage dementia and emphysema, although shockingly she does not have even a whisper of lung cancer. She doesn’t really walk and she doesn’t talk much, but she smiles a lot and she really lights up when she sees our children. She also has two cousins with dementia who are 96 and 98, so she could very possibly be here for a while.
But this past week the call was different. She was not staying awake for more than a few moments. She was not talking. Not eating. Not drinking. When her eyes were open they were vacant. Her breathing was a little rattly. She was cold and curled up on her bed like a child. Both my mom and my aunt had spent time with her, and the staff at her facility – who are truly sent from heaven – felt that this was the beginning of the end. I made my sister go with me and we drove over to see her. I had to be out of town Wednesday and Thursday and I couldn’t live with the fact that she might really die and I didn’t at least say “I love you” one more time. So we tip-toed into her room and sat down on the bed. My sister put her hand on her shoulder and said hello, told her who we were. Not much response. I haven’t seen my Grandma asleep since I was about 7 and used to sleep over, sprawling in the center of my Grandma and Grandpa’s king sized bed so it was odd to see her like that. We talked to her a little and she kind of made an mmm hmmm sound when we asked if she was cold. And then she opened her eyes, looked right at my sister and said, “What are you doing?” and then closed her eyes again.
I almost laughed out loud! This was not the voice of someone on her deathbed. We said we had come to visit, blah, blah, blah. We told her about funny things we had done with her. She smiled a little, opened her eyes a couple of times. But aside from the totally unexpected question, she did, in fact, seem like this might be it. Even in dementia and old age she has never been a napper. So to me her in-and-out-of-sleep behavior seemed like that of someone who is tired. With a capital T. Somebody who is perfectly at peace with throwing in the towel.
We took turns having a few moments with her in private. I went first, then sat in the lobby waiting on my sister, wondering if future nursing home lobbies will be decorated with posters of Kiss and Led Zeppelin, instead of Charlie Chaplin and some popular-in-1929 radio host. The next day I left on my business trip, waiting for the phone to ring. On Thursday I saw that my mom had called while I was doing an interview for a video. I called her back, ready to hear that it had finally happened. That Grandma had died. I said to my mom, “So, what’s happening? Any news?”
My mom said, “Well, today Grandma sat up and ate two boxes of Fruit Loops.”
That time I did laugh.
And I felt like I had fallen for yet another false alarm. But what can you do? She will, in fact, die, probably sooner than later. It’s her time frame, not ours. And maybe the Fruit Loops were the real false alarm. Like the kick a runner gets at the end of the race. And if they were, I’m glad she didn’t waste it eating Grape Nuts.
My other Grandma is also 90 years old. She also lives in assisted living, the kind where you have a private apartment and a social life. She is slipping a little too, but I think after 90 years of a pretty full life that’s just the way it goes. I also figure that with this gene pool behind me, my lack of smoking, my general enjoyment of exercise and my extreme dislike of bacon, that I will live to be at least 110.
I can only hope that I will use those years to touch as many lives as I know my grandmothers have.
P.S. If you are reading this and you are related to me (which some of you are), and are shaking your head with a smart-ass comment on your lips about the mental workings of my mom/aunt/grandma, please keep that to yourself. I already know.