The nature of our relationship has changed. I am not always able to connect with Mom like I used to. Even when we find a quiet corner to ourselves, she is distracted and often isn’t interested in singing with me. It’s not that she’s forgetting our favorite songs, she just isn’t attentive. Her ability to focus has dwindled. Sometimes, her eyes are half shut and she’s too tired to interact. Often, she’s in an angry mood. She’ll comment on how she hates everyone. They are all up to no good. She wants to leave, go home, but she has no concept of “home.”
“Home is where you are,” she told me, when I asked.
I find myself becoming quiet in the face of her persistent negative random pronouncements.
“I hate all these people,” she states.
“Then look at me,” I suggest. “Let’s look at each other and talk together.”
She looks at me and smiles. It’s as if she is lit up from within, and I take comfort in seeing her come alive.
It doesn’t last too long, though, and then she’s back to critiquing everything around her, often with a clarity about her situation that astounds me.
“How did we get here?” she asks.
How indeed.
My husband Jeff suggested I also write about how bubbly she can be, how when he comes to visit, she is animated and flirtatious. I don’t see that side of her enough. And it’s true that her moods change rapidly these days, so even though there’s no promise of her smiles, they do come around.
When I feel like there’s nothing to connect us, when I’ve had enough, we walk along the halls and I deposit her in the main room at one of the tables. I hand her Fred the cat and her nursery rhyme book to look at, and she seems content to comment on each of the pages, pet Fred and talk to her table-mates, most of whom cannot understand her as their main language is Russian.
Maybe I’m being selfish. Maybe it doesn’t matter how Mom is on any given day. Maybe what really matters is just my presence, my very being, sitting next to her, being a sounding board for her thoughts. Maybe I should stop asking so much from her. Because smiles and laughs are not sustainable. We all experience varying moods.
And maybe I should remember that Alzheimer’s is a progressive disease. It is hard to face the fact that Mom’s behavior is part of an inevitable descent. This disease has no cure. Death is certain. What scares me is that she has moments when she knows what is happening to her. How cruel this disease is.
As I say a quick goodbye and sneak out the door, I feel disheartened, guilty, and overwhelmingly sad. I have to learn to regulate my own emotions not tie them to her moods and behavior. This isn’t about me. This is about being there for Mom. I must internalize the idea that taking care of Mom—loving Mom—is one of those tasks that must be unconditional and unrewarded.
There is so much work to do.
I realize that there are probably a lot of people who have watched helplessly while their loved ones, who were conscious of their fates, wasted away from illness. I admire all of you who have had the strength it took to journey with them. Please send some of that strength my way, because this is extremely devastating.
I set myself a complicated task in the kitchen today to ward off my sadness. It helped some, but I may go back to bake something soon. Here it is, the fruits of my labor, an intensive, aromatic ratatouille that goes well with just about anything—rice, tofu, meatballs.
I made a huge pot of this stuff. I’m hoping there will be leftovers next week during the nine days leading up to Tisha B’Av (a national day of mourning in the Jewish community that observes the destruction of the First Temple by the Babylonians and the Second Temple by the Romans in Jerusalem) so that I don’t have to cook so intensely next week.
Then again, maybe I'll be glad of the challenge.
Ratatouille*
This dish is amazingly colorful. It will liven up any table, and any mood.
2 red onions, sliced
4 cloves garlic, minced
2-3 Tbsp olive oil
2 medium eggplants, cubed
2 dark green zucchini, sliced
2 red peppers, chopped
3 ripe tomatoes, chopped
¼ cup fresh basil (plus minced stems to fry with the garlic)
2-3 sprigs thyme
1 cup crushed tomatoes
1 Tbsp balsamic vinegar
Salt and pepper to taste
Zest of one lemon (optional)
Directions:
Pre-cut all vegetables and set in separate containers. In a large skillet, using 1 Tbsp of the oil, sauté eggplant on medium high flame until it begins to brown. Set aside. Do the same for peppers and zucchini. Using remaining oil, saute garlic, minced basil stems, and onion. Add eggplant, pepper and zucchini to the pot, and spices. After a few minutes, add tomatoes and vinegar. Bring to a boil then simmer for about 20 minutes until eggplant is soft. Stir in lemon zest (if using) and remove from flame.
*This is an adaptation of Jamie Oliver’s ratatouille.