Q. What’s the best part of having Alzheimer’s?
A. You get to meet new people every day.
Humor can get us through dark places, laughing our way through the truths that are mixed into the jokes.
My mom’s Alzheimer’s has not impacted her ability to recognize people she knows.
A few months ago we ran into a good friend of my mom’s, a lady who used to live across the street — she babysat me when I was a baby (I recently turned 50) — and when I saw her across the lobby, I said, as I pushed mom’s wheelchair towards her friend, “Oh, look who’s here!”
My mom looked around. “Who?”
As we were getting closer I said “It’s Rusty.”
Mom kept looking around. “Where.”
By this point, we were standing in front of Rusty, and I was saying hello to her. There was a moment’s pause and I could see mom’s momentary confusion and then see the recognition return to her eyes. “Well, hello!”
I’m learning that “Oh. Ok.” is a good generic response
And, okay, she’s not always good with people she doesn’t see often. Like the nurse at her primary care doctor’s office, the nurse who brings us back to the exam room, takes mom’s weight, blood pressure, asks all the standard pre-visit questions. When she leaves the room, mom always says “She seems nice. I haven’t seen her before. She must be new.” After correcting her the first few times, and receiving withering responses from my mom about correcting her, I realized it wasn’t really important if she thought the nurse was new.
I thought of the Alzheimer’s joke recently. I’m not sure why, since it doesn’t apply to my mom. But as it passed through my mind there was a resonance about it and it lingered around my mind for a few hours. Then it hit me: the joke contains truth not only about the person with Alzheimer’s, but it contains truth from a caregiver perspective.
Every day I get to meet a new person: my mom.
Some days the new mom is only slightly different. Other days I feel like I’m meeting someone for the first time.
Growing up, my mom always liked a sandwich on untoasted bread. When she reached her 70s, she started wanting to have the bread lightly toasted. So, for the past twenty years, any time I’ve made her a sandwich the bread has been lightly toasted.
(I also have to remove the crusts – this is newish, in the past decade or so. My mom is diabetic, so we have to measure her carbohydrate intake in order to give her the proper amount of insulin for what she eats. “Cutting the crusts off removes a lot of carbs. Most of the carbs are in the crusts”, she says.)
So, lightly toasted bread, no crusts. Not long ago, she announced, after having a sandwich “Will you not toast the bread. I don’t like the bread toasted.”
“I thought you liked your bread toasted?”
I’ve never liked toast.”
“Oh. Ok.” I didn’t say anything else, or try to remind her that she’s been eating toasted bread for years. I’m learning that “Oh. Ok.” is a good generic response, as it neither reminds her of something she’s forgotten, and, to her ear, it sounds as if I’m admitting to the mistake.
Do I care if she wants the bread toasted or not? No. It’s the suddenness and the certainty of the shift. There was no lead up to the dislike of toast. There were no days where she picked at her sandwich, or left parts of it on the plate.
Well, this is not entirely true…
There are the hamburger buns. Those had to be toasted too. Then layered with butter. That’s how mom likes her hamburger at home: cooked medium, so it’s juicy and the juice and the butter melt together into the toasted (lightly) bun. Maybe when she started cutting the ‘crusts’ off of the hamburger buns I should have begun to suspect something. I just laughed it off.
When she said “I’ve never liked toast”, she said it with one-hundred percent conviction. If someone who didn’t know her had been present, they would have firmly believed that she really didn’t like toast, that she’d never liked toast. It was that sudden and that certain.
The words throw me off balance. Her certainty makes me feel as if I’m the one who’s somehow forgotten how to make the sandwich properly. The child/parent roles come rushing back, I become the child being reminded that I did something wrong.
I know, I know. I’m not supposed to take these things personally. But it’s how I’m programmed. My first thought is always that I was in the wrong. I’m getting better at taking deep breaths and letting go.
It’s not just toast.
What she likes today, she hates tomorrow.
Next week she’ll probably like it again.
Time has become meaningless to me, I’ve got no sense of how long ago something was, unless it was a doctor’s appointment that was marked on my calendar and I can refer back to it. With that in mind, all I can say is that a year (or so) ago, this was the woman who was asking, daily, for me to buy a whole bunch of the small 8 or 10 ounce bottles of water (with the squeeze top, like on dish soap), so she could have bottles of cold water that she could just “grab and drink right down.” We had gone that route, but the water just sat there, so we kept two of the small bottles, and refilled them as needed. It’s not as if she actually got up and walked to the refrigerator to get the bottle to drink right down.
And, of course, there’s all the years when I was growing up and mom was busy with her obsession: cabin building. We had three-and-a-half acres in the mountains and my mom kept moving in old cabins and remodeling them. There were four that were completed, and then two that ended up just being for storage for all the things she collected. But, before I go off down the cabin stories path, I must stick only to the water part of the story. The part of the story where we brought jugs of water with us to drink, so we’d have water on the two hour drive there, to have water while we were there (before the well was dug, and after, when the water was turned off for the winter so the pipes didn’t freeze and break). There were always jugs of water being carted around.
She doesn’t drink water these days. “I hate it. It makes me want to puke.”
She doesn’t drink much fluid these days. Her drink of choice is Gatorade’s G2 (it’s almost sugar-free). For awhile it was the Grape flavor. Then it was the Raspberry Lemonade. Now we’re back to Grape. The decisions aren’t just an “I’m tired of the one kind so I want to drink another for awhile.” The decisions are simply fact: “I don’t like this flavor.”
The list of food that is or isn’t liked on any given day is tough to keep up with. I told Julian that we needed to get one of those old-fashioned In/Out boards like they used to have in offices, the kind where employee names were listed in a column down the left side, and there were two other columns, one for “IN”, the other for “OUT”. Some of the boards had magnets that you took off and moved from the “in” to the “out” column, others had sliders that moved back and forth between the columns. I told Julian we needed one where we could list all the food, and have a “LIKE” and “HATE” column, so we could keep up with it all. (I’ll admit a mistake caused this idea. Mom told me she only wanted the Grape G2 (about two days after we bought a bunch of Raspberry Lemonades). I forgot to pass this info to Julian and caught him just as he was pouring her a Raspberry Lemonade.
Every day, I meet someone new. Physically, she looks like my mom. Older. More Frail. Stooped. Skinny. Small. But, still, she resembles my mom.
It’s the person inside, the person who lives in her mind, that’s constantly new. And, while there are always jokes to be made in times of stress, the truth is: meeting someone new every day sucks.
The Uninvited Guest is a series of posts about Alzheimer’s disease: mostly from a caregiver’s perspective, as I can only watch my mother deal with this disease. She refuses (understandably to discuss it), so I can’t really write about what she is or isn’t feeling. This series of posts is meant to be raw and honest – so they won’t be polished and proofed – probably only spell-checked. I want to write them while the feelings are still fresh, so they’re mostly just the way the thoughts pour out onto the page, almost stream of conscious – polishing can come at another time.
These posts will be a variety of forms: narrative essay, lists, journal entry, poem, photo with text; some will be long, others just a few words or sentences.
Previous Posts can be found here.