Dementia Journal: November 13, 2018 — Unnatural disasters in Daydreaming on the Porch

As I begin to write this I’m listening to Thad Fiscella’s hauntingly beautiful album, “Vast.”
But I’ve been reading compulsively all day about the surreal wildfires in California, which one resident who escaped the Camp Fire with her life called, “apocalyptic. “

That’s just one part of the news that’s unbearable. Every day it’s just awful. The good news is being shoved aside as always because we’re drawn like moths to a flame to the bad news. But who can blame us? Our familiar world seems to be crumbling — environmentally, politically, socially — and we’re all trying to look the other way.

Back in Dementia World Mom doesn’t have any idea what’s going on. She tries to ask questions when she sees me and one of the caregivers feverishly engaged in discussion on some urgent topic or another, but she doesn’t understand when we attempt to answer what she’s asking.

Being with and caring for Mom these days is like a roller coaster ride. The highs are really up there, and the lows are truly the pits of numbing despair. Last night was high. It was one of Mom’s best nights in recent months. She was calm, read her Devotions, and talked and repeated questions minimally. I remember feeling like the stress had melted away.

The night before last was almost the opposite. She was in a state of near panic most of the evening, insisting she was dying, that I was harming her, and that I didn’t believe her when she said she was dying. No, I didn’t believe her because her vitals and blood sugar were nearly perfect yesterday. But all night it was “I’m dying.” “No you’re not, you’re living and loving,”. I kept saying almost as if it was a mantra. Meantime, while all this is going on, I’m feeling again rather numb, and have no appetite yet I know I have to fix myself some supper. It’s 9:30. I say to myself, “Don’t let me get to the point where all I want to do is snack nervously and consume protein and nutrition drinks. That’s so easy and quick.

I’m getting to where almost nothing Mom says or does shocks me anymore. Last night I had a flicker of panic when I looked at her and she didn’t seem to be breathing. “Is this it?” Maybe she really was dying. She was okay and to my immense relief she started saying something to me. I can’t remember what. This is what life is like on a daily basis.

Right before going to bed the “dying” drama was relentless. It was excruciating. I gave Mom an Ativan. “Okay, time to get to bed,” I said with forced cheerfulness. “Soon you’ll be tucked in your cozy bed.”

I said a prayer for her. It was like magic. She calmed down briefly. Maybe I should have started the bedtime routine a half hour earlier. But I procrastinate. Getting her ready for bed can be an ordeal. Getting her in and out of the transport chair, helping her to brush her teeth and rinse with mouthwash. Getting her in bed by myself and onto the portable commode without her falling or me hurting my back. Finally in bed, she’s still agitated and accusing me of this and that. After about about a half hour it’s quiet. The house is quiet, too, and I can begin the only part of the day when I can actually read, write or work with my photographs.

I’m only writing what’s fresh in my mind. It’s 5:20 In the morning. I’m quite awake and alert. I have to tell you that most of the time, later in the mornings and all during the day, Mom is so sweet, and I feel especially protective towards her. The best part of the day is when I finally go into her bedroom to get her up after she’s slept all night. When I wake her she looks at me with the most beautiful and natural smile. She’s so relaxed after a good night’s sleep. I joke with her. “Mom, sleepy head, it’s time to get up. It’s after 11. Do you want to stay in bed all day?” “No, of course not,” she replies. “What are we having for breakfast?”

As the final part of this entry, I’m including some of the dialog we’ve had sitting on the sofa night after night. Sometimes her sense of humor is readily apparent. Other times she says rather profound and lucid things. I never cease to be amazed.

Mom: “I pray to God to keep me alive until my children grow up.”

“I’m 94? That’s getting old.”

Mom: “Who are you?

Me: “Guess who I am?”

Mom: “You’re my son.”

Me: “Yes! I love you!”

Mom: “You make my life worthwhile.” (I melted at hearing this.)

A week or so ago Mom dreamed she visited her hometown to see her sister and mother and father.

A few minutes after she woke up, the first thing she told me was that she was glad to get back home. “I missed you,” she said.

I said, “There’s no place like home.”

“Absolutely,” Mom said.

The evening of Oct. 30:

Mom continues to ask where her sisters and mother and father are.

Me: “In Heaven,” I reply.

Mom. “They died? I don’t believe you. I would have known about that.” She continued to ask about her parents and sisters. Over and over.

“I miss them,” she said.

Then, “Is God taking care of us?”

“I’m Itching like mad?”

“I’m praying that God will take me, and you with me.

“F___. Pray for me.” (F is the first letter of my middle name, which my family has always called me.)

“God, I’m asking you to take care of F__ and me. Are we worth it?”

Mom: “You know what? I’ve been praying for us all along”

A few months ago I got her a small frog figurine dressed in a raincoat and holding an umbrella and rain gauge.

Mom: “Who’s that little man?”

Me. “That’s Fabian the frog man. (I like to give things names.)

Mom: “What? I must be crazy or surrounded by crazy people. I don’t talk like that.” (I had to laugh at this. Sometimes, very rarely, she doesn’t seem to be suffering from dementia at all).

Most of the time, however, she’s very fond of Fabian and the way we talk about him. I put him on the TV tray in front of the sofa.

“God, will you take care of us.? We’re asking for your help.”

Nov. 7

Me: “You’re my Mama.”

Mom. “I am? Isn’t that amazing?”

“God, help me to be patient with F___!

Mom. “Will we see Mama soon?”

Me: “We don’t know when we’ll see your Mama. She’s in Heaven.”

Mom: “She died? I didn’t know she died.” (My grandmother, who I was very close to, even though we lived 800 miles apart, died in 1965. I was only 14.)

Tonight, Nov. 12

Mom: “I don’t think I’m going to be around much longer.”

Me: “Of course you will, Mom”. (What else can one day at times like this? I feel rather helpless and incapable of the right words in response. But I have to say something.).

It’s almost 6 am. I really have to get to bed.

Last updated November 14, 2018