We had a heart-stopping conversation with the medical staff at Mom’s care facility this week. After ascertaining that Mom is doing well, that she is stable and healthy (yes, apart from the Alzheimer’s), the head nurse asked us how we wanted the medical staff to treat Mom in an emergency situation. Meaning, if Mom stopped breathing (and one can just about imagine her falling or choking or otherwise having an accident), what level of medical intervention should the staff employ to bring her back?
They made the distinction between external first aid—like pumping a heart or applying an oxygen mask—and more intrusive assistance—like intubating someone. What would we allow them to do for Mom? Would we draw a line in their ability to save her life?
My dad is Mom’s legal guardian. This was his call, and I watched as he carefully put his thoughts in order.
First he said that he didn’t think that Mom was really living; she was existing. For all her moments of joy, her beautiful voice rising in song, Mom leads a life lived in fog and confusion. She can no longer do so many things we take for granted. She is confined to a small physical space, sitting most of her day. The former competent Naomi is hidden in her tangled brain. I know she’s still there, but there’s so little of her left.
Then he told us about a conversation he had with a friend who had recently lost his wife. When Daddy went to comfort this friend, the friend said, “I think you have it worse than I do.” Death brings a finality that Alzheimer’s denies us. We who have loved ones with this disease mourn the living.
No invasive procedures. That was my dad’s decision.
I involuntarily sucked in my breath and tears came to my eyes as I imagined scenarios that would involve not resuscitating Mom. Could I live with Daddy’s decision? Did I have a choice? What was my opinion? Did it matter what I felt?
I love my mom so much, and for all the difficulties of Alzheimer’s, I am grateful that she is still with us, that I get to see her as often as I can and connect—even haphazardly—with her fleeting self. But I agree with Daddy’s assessment of her situation: this is not life, this is merely existence.
I’m not sure why it took the staff of the care facility such a long time to raise these emergency care questions. Mom has now been in this facility for more than a year. In retrospect, I don’t know that we could have answered this question last year. Her move created such an emotional upheaval in our lives, not least of all in Mom’s, that it has taken us this whole time to be comfortable with her current living arrangements.
Mom sometimes asks after her parents as if she is a young child who needs to go home to them. I don’t think she can articulate where or what home is anymore, and I don’t believe she’d recognize any of her belongings in my dad’s house. Our focus has been on keeping her active and content in the place in which she is currently living. Yes, there are drawbacks to not having her with us at home. But given the circumstances of this illness, in her present home, Mom is well cared for. That is what it comes down to.
Now all we have to do is keep her healthy and content. And pray that God assists each of us in navigating this arduous and distressing journey.
I had the pleasure of finally being able to post a link to the TEDx Talk I gave in March at Shenkar College in Tel Aviv. It is about “Finding Joy in Alzheimer’s,” a theme I reiterate in much of my writing about Mom’s Alzheimer’s. It has definitely become more challenging the longer Mom lives with this pernicious disease, but if you could see her bright smile as she engages with the staff and other residents, or listens to her music, you’d know that there is still joy within her—and joy that she can share with us. You can watch the video here. I encourage you to share this with others so that we can spread this message far and wide.
Being in a happy mood, I made one of my all-time favorite comfort dishes—gnocchi with pesto sauce. You could make this dish with almost any pasta, but I prefer gnocchi for its soft, doughy consistency. It seems to enhance the creaminess of the pesto sauce.
Gnocchi with Pesto Sauce
Wow, I love to eat this creamy dish. Actually, just about anything with pesto sauce is great. I love basil. I put fresh basil in my green salads, too. It gives it a real kick.
1 500 gr / 16 oz package gnocchi
1 liter / 1 quart water
2 tsp salt
2 cups fresh basil
¼ cup olive oil
¼ cup pine nuts
2-3 cloves garlic
Salt and pepper to taste
4 Tbsp flour
4 Tbsp vegetable oil
1 cup milk or cooking cream
½ cup Parmesan cheese, grated
Salt and pepper to taste
Fill a large pot three-fourths full of water, add salt, and boil. When water reaches boiling point, add gnocchi. Using a fork, separate the gnocchi as its cooking. Cook for an additional minute after they begin to rise to the surface (or taste test one to make sure it’s cooked through). Drain and return to pot without water.
Meanwhile, place garlic, pine nuts, spices and basil leaves in a food processor and pulse several times. Scrape down sides then slowly add olive oil to mixture while the food processor is running. Set aside.
Place a small saucepan on medium high heat. Mix flour and oil, then add milk/cream. Stir constantly until sauce begins to thicken. Add cheese and pesto sauce and continue stirring until cheese is melted.
Pour sauce over gnocchi and mix well until pasta is covered. Serve immediately. Or, if you plan on reheating, move gnocchi to a casserole dish and bake at 350° F / 180° C until cheese topping begins to brown.