Last night Jamie was depressed and reluctant to tell me the reason. Lately she’s a little too careful of my feelings, which is very sweet but unnecessary. I don’t mind being woken up from a nap or hearing a problem. Ask my kids. She was very melancholy as I made dinner and finally, at my third or fourth request, toward the end of dinner, she confessed what was on her mind.
When she gets something on her mind it lingers there, in the background, as her language struggles to form around it. You can see her thinking, thinking hard, while she gestures with her hand, or both hands, and wrinkles her nose or squints trying to hunt for the words to express it. Sometimes she just shrugs her shoulders in defeat.
She said, “I can’t do anything.” I’m interpreting. She actually said, “I can’t…” then waved her hands around gently, looking at each of them in turn, and then looking at me with a helpless expression, ending with, “Yeah.” Which is the way she always ends her attempts to communicate. It’s as if she’s saying, “That’s what I’m trying to say.” But her “Yeah” often follows no words at all, just expressions and gestures, and we have to really dig with “yes” and “no” questions, starting with general topics and drilling down to specifics. Many times we never arrive at what she thought she was telling us with just that one word, “Yeah.”
I’ve found it very helpful for her to discuss her disease when she’s depressed like this. Her inability to do things and her struggle to express what’s on her mind really demoralizes her and leaves her feeling “less than.” And I want her to constantly feel that she’s winning, not losing, that she’s able, not disabled, my joy, not my burden. And these efforts on my part are really paying off in her self-esteem, which is blossoming.
So I told her, “You know, you’re actually very lucky.”
“Really?” (A word she can always find)
“Yes! Your disease is making it super hard for you to find words. You can’t say what you think, what you feel, and it’s so frustrating to you. But … you know me. You know everyone around you. You see someone at the Farmer’s Market from your old neighborhood and you recognize them right away and know exactly who they are. So what if you can’t say their name or describe how you know them. Those are just words, but that woman knew that you recognized her, and that big hug you gave her told her you knew exactly who she was.
“Some people with your disease can speak very clearly, know all of their words, but don’t know who someone is, their own family, their own friends. They forget who they were, their old job. What they did and who they loved is lost to them.”
At this point she’s incredulous. “Really?”
“Yes! But your disease has left your memory intact. Do you remember teaching economics at the University of Missouri?”
“Yes!” Big grin – because this is something she CAN do! She can remember. So I run with it.
“Were you a professor or adjunct?”
“The first one.”
“What did you like about teaching, was it the students?”
“No.” I laugh because I was sure she would have liked her students.
“The subject matter?”
“You liked economics?”
“Yes!” (She’s really happy now)
“Do you remember the other professors?”
“Did you like them?”
“Can you tell me anything about teaching?”
“I liked it. I really liked it. I really, really liked it.” (Tears)
I drilled down a little further and mentioned writing her thesis, she had a PHD, and other accomplishments she should still be very proud of. It was a moving conversation for both of us.
Although she’s sad that she could not continue to teach, she’s in touch with what an amazing person she is for having had a career she loved and being able to remember it in spite of her disease. She’s in awe that others with Alzheimer’s can’t remember everything the way she can. I never tell her that it’s likely she’ll forget one day, too. Why? We’re here now. We’re vibrant and we’re thinking pretty damn clearly right now. Being optimistic is so important for her and it keeps her from those bad days we used to have, and we may have again, when she shuts down and shuts us out and is just mad. So far, having conversations like this has kept those days at bay.
We began to talk about her artwork. I said, “Not only were you a professor, you were an artist. Not many people get to have a satisfying career and something else they do so well.”
“I want to do it.”
“You can still do it! Even though you don’t paint flowers or landscapes, your abstract paintings are amazing!”
I brought her one of the framed pieces we made together the day before Easter, removing it from its place on the wall, and showed her how lovely her recent work is. The colors she chooses, the shapes her faltering hand paints, are luminous and worthy of her brilliant past. She smiled. Tears again. “Let’s do it.” I agreed, of course.
But the reality is that creating those two pieces that one Saturday was a momentous task. She made the frames, gluing a hundred buttons around the edges after I rubbed some paint on them. We chose portions of her painting to trim and put in the frames. That 2 or 3 hour project took every ounce of her mental strength, and the day that followed was a very bad day.
Granted, it was early in my life with her, but Easter Sunday was the day she had her worst melt down, and, or because, I was completely alone with her for 48 hours and didn’t yet really know what I was doing, I felt very vulnerable.
She started talking, again, about an incident on Friday, two days before, when she swore there was a man outside trying to talk to her and we scared him away. One of her caretakers was with her on the dock when she started telling her to leave her alone, to go inside, so this man would come. I got a panicked call, “Come down here right away, we’re having a bad time.”
It took us about 15 minutes to get Jamie into the apartment again. She was stomping around the parking lot, sitting on the curb, waving her arms and yelling, pacing back and forth, saying we had to go in and leave her alone so the man would come.
We finally got her in when I threatened her with calling 911. I didn’t know what else to do. By bedtime that night she seemed ok. And the next day, Saturday was wonderful. We created those two beautiful paintings together, along with their frames.
But the next day she insisted, again, that we had scared off this man whom she said loved her and wanted to marry her, and insisted that he was, right then, outside the door. I briefly opened the door to look, thinking it would appease her to know that no one was out there. Instead, she insisted that he was, and rushed me to get past me to the door and get to him. I wiggled in front of her and locked it to keep her from running away. She’s bigger and stronger than me and she figured out the lock and got out. In the end, after quite an ordeal, she was sitting outside the door on the ground crying because I had scared him away. She came in, I made dinner, we had our evening routine and went to bed without words. She scowled the entire evening. She wouldn’t look at me or talk to me. It was, to the best of my memory, the worst day of my life. What had I gotten myself into? I cried myself to sleep that night.
I called the neurologist the next day and the nurse explained that hallucinations were normal and her behavior was classic, not “bad” or an issue to be addressed medically. The trick, she explained, is not to fight them, but to play along. Next time, the nurse said, say something to keep her inside rather than tell her she can’t leave. You could have said, “He’ll probably call before he comes to see you. Let’s stay in, in case the phone rings!”
What I forgot to ask was, “Does working really hard mentally make things worse for her?”
Since Easter I have learned that preventing aggravation and anxiety are key. Like having this type of conversation with her, keeping her aware that she’s fighting a disease and she’s really doing great. Reassurances bring her a lot of peace because otherwise she’s frequently worrying that she’s doing something wrong. She’s a person with a great deal of accomplishment and pride and she wants to do the right thing.
Being defective drives her nuts, frustrates her, and makes her angry with herself. So I give her things to do. She helps me cook and clean. It takes her about a minute per dish or utensil to get it into the dishwasher, but I want her to do it. First, it keeps her busy and prevents boredom, the enemy, second, it reinforces that I trust her and need her and she’s not the only one who needs a hand. At the end of the night I thank her for helping with dinner or the dishes or picking up or folding laundry, even though I had to redo just about everything she did. It’s important and she appreciates it more than you could ever imagine. Feeling useful gives her a great deal of happiness.
Tonight, after helping in the kitchen, she was thinking about our dinner conversation regarding her disease and looked at me with this very pensive expression and said, “I’ve been coming up!” while lifting both of her hands.
“Do you mean you’ve been doing better?”
I know it’s true. She’s doing much better.
So art, though it’s as much a struggle as getting a fork into the dishwasher basket, is going to be important for us. It’s the only thing from her past that she can still do. She has tried to crochet, but became so frustrated and sad. Art can be messy. It can be freeform and abstract. I will have to find a way help her not burn out with it. It exhausts her mentally, and a day that exhausts her mentally can lead to hallucinations and other problems the next day, so I’ll have to be gentle. But I will keep trying. Early in the day? Very brief projects?
One solution might be to paint in front of her. Let her vicariously experience creating. One day, when I had gotten all of the supplies out and set her up and put the brush in her hand, she looked at the brush and said, “Later.” Another time, before I did all of the set up, I asked if she wanted to do some art, but she said “I’m tired.” And the expression on her face as one of resignation.
But last night she said, “Let’s do it,” again. I know she wants to experience creating art, as exhausting as it is for her, so I have to make it happen in some way. I have not tried the letting-her-watch-me method to see if it gives her the same satisfaction as creating art herself. But I’ll try it.