Dementia Journal, Sept. 11, 2019: Dementia Storms and Hurricanes in Daydreaming on the Porch

It’s like being in a different world this week compared to last. I’m relatively relaxed, life seems to have returned to what passes for normal these days, and Hurricane Dorian is now a terrible, fading memory for us, but not, of course, for the Bahamas victims of that awful weather catastrophe.

We’ve screwed up the weather and climate so effectively that the first significant hurricane of the season was also, for a time, the most powerful Atlantic storm in recorded history. I shudder at the memory of what could have happened to us here in Charleston, right on course to get the storm as it curved away from Florida and marched north northwest right for us. Then it made its long predicted eastward turn. What if it hadn’t? Still, it barely missed us, passing only 50 or 60 miles off the coast. We had the strongest winds I’ve ever felt in the 25 years I’ve lived here. We hunkered down and lost power for 12 hours, but it caused much less damage than it could have. We are very fortunate and grateful.

Imagine if you will, getting an evacuation order the second year in a row (three out of the past four years) from our governor and being told to get out of town while you can, when for us there was no good option. I doubt Mom, who will soon be 96, would have survived an evacuation. She’s totally housebound, diabetic and has heart failure. Her dementia would likely have resulted in a mental storm of unprecedented ferocity. We would have had to sedate her. There is no shelter I can take her to, first responders wouldn’t be out if the storm did come, and being cooped up in a hotel for days in her condition is unfathomable. Our governor and other officials don’t address from year to year the terrible quandary Mom and I face, and many others like us as well. It’s easy for him to play politics and cover his liability issues, even if all the models for the storm show it veering away from us. But it’s potentially deadly for those who have to stay behind. The only way I’m leaving here is if a category 4 or 5 hurricane is predicted to hit us directly. This place would probably be wiped out if a storm as powerful as Dorian was when it stalled over the Bahamas were ever to come here. Global warming is making it more and more a risk and danger to live on the coast. After four straight years of near misses, I want to get out of here as soon as I can.

So I was very, very anxious as I looked at the forecast from the National Hurricane Center every three hours. I was awake at 2 and 5 am last Wednesday dreading my compulsion to look at the forecast yet again instead of waiting until 11. We go through this sense of dread every August and September, dreading whether we’ll be wiped off the map as happened to the homes and towns of 70,000 people in the Bahamas who were suddenly homeless.

I gave Mom Ativan Wednesday, and she pretty much slept through the storm. She had no idea there was a hurricane right off the coast. Blissful ignorance.

Another reason I’m so nervous during Hurricane season is because Mom’s moods are so unpredictable and volatile. Here’s what I emailed someone the other night:

“…I go through emotional roller coaster rides with Mom every day now. In the morning she’s sweet as an angel, and it’s a joy to look at her beautiful smile when she gets up for breakfast. At night, after about 9 or 10, Sundowner’s Syndrome kicks in and she undergoes this bizarre metamorphosis into an angry, frightened, and cussing “other” person who’s unrecognizable, except it’s the same unrecognizable person each night. Last night, she called me a ‘damn fool’ so many times I was beginning to think, “By golly, she might be right.”

One HAS to maintain some sense of humor about the absurdity of the situation I’m in. Dementia is a truly staggering affliction of the mind , but I’m not going to let Mom’s disease drag me down. I know it’s not “her.” As I mentioned earlier, it’s this “other person.” For instance, for the last half hour now Mom’s been babbling nonsense about someone trying to kill her. She says this so often I sometimes wonder if something horrible happened to her that she never told us about. I’m actually trying to write this now while she’s carrying on in this delusional state. I just told her she must have had a bad dream or nightmare. “You damn fool,” she replied.

This mood tonight is so diametrically opposite from what she’s like most of the time, even late at night. She’s calmed down a bit now and just held out her hand for me to hold.

I’ve finally accepted that Mom really doesn’t seem to know who I am. She frequently asks me who I am, and when I tell her to guess she never says my name anymore. She’ll say I’m one of the caregivers or her mother or father. She often asks where her mother is. When I tell her my name she acts like she suddenly remembers I’m her son.

Despite her advanced dementia, and I’ve said this before, she retains a fervent belief in God despite the extensive brain deterioration she’s experienced for years. Her most common phrase is “Pray for me.” I think this last bastion of cognitive and spiritual awareness is what keeps her going and which gives her hope, even if she has to be reassured over and over again that God is with her and people are praying for her.

She’s afraid to die, despite her lifelong strong faith, and is not ready to go. At other times, she does appear to be ready.

I wrote down these comments from this summer:

Mom: “I’m dying.”
Me: “No, you’re not.
Mom: “Oh thank God. I love this life.”

Then days later:
“I’m ready, God. Take me if you’re ready.”

A couple of weeks ago:
“Mama. Are you home? Amen.”

“Mama. You better come. I’m going crazy.”

And this just a few days ago on Sept. 7:
“God’s blessing me. I feel it. Am I in heaven?”

Last updated September 23, 2019