The Unbearable Heaviness of Being

Its birthday-anniversary season in our family. First my birthday on August 26, then remembering my grandmother on her birthday on August 27, then my son’s birthday on September 1 (Happy birthday, Rafi!), my parent’s anniversary on September 3, my dad’s birthday on September 6, my anniversary on September 9, and my grandson’s birthday a week later. This year, lucky us, it’s also combined with the start of Rosh Hashanah.

And through it all, we’re missing Mom.

We are so used to her not being in the daily patter of our lives that it doesn’t seem odd that she’s not with us. And yet, I am hyper aware of what she’s missing and of how she would have loved celebrating all these moments with us. I don’t want her in her current state, I want her as she was, kind, loving, whole, playful, happy, enveloping.

Those have been my thoughts even as I am madly happy and feeling blessed by all that God has given me.

Someone on one of my Facebook groups recently posted an infographic of the seven stages of Alzheimer’s. It is painful for me to even read through them, realizing how much we’ve been through—and how much still lies ahead.

Stage 1: Normal Outward Behavior.

Stage 2: Very Mild Changes.

Stage 3: Mild Decline.

Stage 4: Moderate Decline.

Stage 5: Moderately Severe Decline.

Stage 6: Severe Decline.

Stage 7: Very Severe Decline.

I would characterize Mom as being in Stage 6, severe decline. We’ve been on hold in this stage for several years now. Both my dad and I feel like her behavior is changing, that she’s less able to communicate, that she has more vacant and distant times. And yet, back she’ll come with her endearing dislocated chatter and her ability to remember whole pieces of classical music, and we are appeased that despite the difficulties, we still have her with us and we can still connect. There is nothing unambiguous in this ambiguous sense of loss, a loss that does not end as our loved ones splinter into ever smaller pieces of themselves. Gone but still here.

I can’t say how we’ll feel when Mom descends into a more severe decline. I could try and be positive. This long, slow Alzheimer’s slide means that I have time to tell Mom that I love her. I have time to adjust and anticipate each stage of this disease, difficult as it may be, so that I can say everything I need to say to her. Or perhaps just sit with her and hold her hand. For someone who no longer understands, perhaps that is enough. I only know that I want to hold on tightly and keep her with us. Because the alternative is unbearable.

We’ve been eating dairy meals for Shabbat lunch during these hot months. Oh, the taste of softened butter on challah. It makes my week. Last week, with everyone home, I tried a new quiche recipe with Bulgarian cheese. It came out really well.

Bulgarian Quiche

My son taught me the richness of making toast sandwiches of pesto and Bulgarian cheese. This quiche has the same tart and aromatic taste.

Crust:

3 gr yeast

½ cup warm water

1 Tbsp sugar

2 ½ cups flour

¼ cup olive oil

¼ cup canola oil

Filling:

2 eggs

¼ cup plus 2 Tbsp cooking cream

2 Tbsp butter

¼ scant cup fresh basil leaves, chopped

1 tsp dried rosemary

1 block (approximately 120 grams or 4 oz) Bulgarian cheese, crumbled

¼ cup Parmesan cheese, grated

Salt and pepper to taste

Cherry tomatoes, sliced for garnish

Directions:

In a small bowl, proof yeast with warm water and sugar. Add remaining ingredients and knead until dough is formed. Let dough rise for an hour. Roll out and place in quiche pan, making sure to use a fork to pierce the bottom to allow steam to be released. Bake for 10 minutes at 400° F / 200° C. Meanwhile, in a large mixing bowl beat eggs, cream, butter and salt and pepper. Add remaining ingredients—cheeses and spices—and pour into cooled pie pan. Top with cherry tomato halves and bake in oven for 22 minutes at 400° F / 200° C.