There's No Place Like Home
Lucy Gregg Muir
My 86-year-old mother, Dorothy, has twice been diagnosed with the syndrome of inappropriate antidiuretic hormone (ADH) secretion (SIADH). SIADH if untreated causes symptoms of dementia and weakness in elderly patients. The first time she was diagnosed, I was lucky that I had a friend who worked in the healthcare field and knew about SIADH. She recommended that I ask the doctors to look for it. SIADH is not a tricky diagnosis; there are simple laboratory tests that can easily confirm it, and a simple treatment stops and reverses the symptoms. But both times she had the symptoms, I had to fight for the diagnosis. Doctors were happy instead to attribute her sudden onset dementia to her age and did nothing but recommend palliative care.
The following is a conversation I had with my mother while she was finally receiving the treatment she needed. She was still in a fog, but lucid enough to swing back and forth between the world she was dredging up from somewhere deep in her mind, and the superficial world we mostly inhabit. I was happy to travel with her through the synapses, but I am also happy that her road now is straight and true. Mostly.
“I’m sorry. What did you just say?”
Oh, this is going to be good. I need to record this. I’m sure she’ll forgive me.
“I said, are they sending you Morse code messages through your leg? You patted your leg.”
“Right, Mom. I’m getting special messages from Heaven.”
I think it’s okay for me to make fun of my mother’s dementia; it’s only temporary.
“Well, if you could see what I see, your leg is pulsating. You have a gun under there?”
“Do I have a gun under my leg?”
“There is some kind of Morse code coming from under your skin.”
I’m laughing. I can’t help it.
“What are you laughing at? It’s not that unusual.”
“It’s not? You know a lot of people who get Morse code messages from under their skin?”
“You. That’s one. You know that’s what they do.”
“Who is this they you’re talking about?”
“You don’t watch enough NCIS. If you watch more of these timely shows, then you’d know who they are. You don’t know enough about what’s happening in the world today.”
“Tell me, what is happening in the world today?”
“It’s good and bad. That’s all I know. It’s about being ordinary.”
“Ordinary? What do you mean by that?”
“Well, it’s something we just have to accept. We have to accept ordinary things in this life, we have to find out what is the best for us, and then that’s what we do.”
“We have to be happy doing ordinary things?”
“Yes. I would feel so much better if my hair looked nice.”
Over the past few months, my mother has become increasingly weaker, unable to care for herself, no longer able to drive, lost her memory, her lucidity. She’s been depressed. Her hair is long and dirty.
“I know, Mom. I wonder if the nurses have anyone here who could cut your hair.”
“They judge me by how I look here.”
“No they don’t, they don’t judge you. They judge you by your health.”
SIADH is a depletion of minerals in your body. We tell people to drink lots and lots of water, but when you’re old and your taste buds don’t work and you don’t crave any food in particular, water is the only thing that tastes good, and you’ve been told water is good for you. So you eat less and drink more. You flush important minerals - potassium, magnesium, sodium, calcium - out of your body. Electrolytes. And this causes memory impairment, depression, confusion, and hallucinations. Dementia. Dementia that can be reversed, if they look for the problem, the SIADH.
“I will wake up at 6 o’clock tomorrow morning at home, someplace, at somebody’s home.”
“No, you’re going to wake up here at the hospital.”
“You will wake up tomorrow. You will wake up here at the hospital.”
“I’ll have to tell the nurses to put in my chart that if I die in the night they should not, under any circumstances, call you until morning.”
In 1995, twenty years ago, my niece had a baby in the middle of the night. My mom called me at five o’clock in the morning to tell me the news, only she lived on the East Coast and I lived on the West Coast. Her five in the morning was my two in the morning. I told her then that I didn’t care who died or had a baby during the night, she shouldn’t call me until the sun came up over where it was that I lived. I was only half joking.
I laugh that she remembers this.
“There’s nothing wrong with your memory, Mom. And you’re not going to die in the night. You’ll be here in the hospital tomorrow and for a couple more days. They have to get you stable. You know that. All right? ”
Before testing her for SIADH, her doctors gave her medications for her depression, medication for dementia. “Dementia is a symptom, not the cause,” I told them. “Look for the cause!”
“You haven’t been trying to get out of bed or anything, right, Mom? You’re too weak to walk by yourself.”
“That was something else, another time. They gave me that drug. I tried to escape. That was the time I threw the telephone at you.”
“Right. That was at the hospital in New Jersey. You had a reaction to a drug and it made you crazy. ”
Haldol. An antipsychotic. It had the reverse effect, making her go from demented flights of fancy into a full-blown violent psychosis.
“It wasn’t you, Mom. Just like this time. This isn’t you, all right? You’re not crazy.”
“I don’t do drugs.”
“Not that kind of drugs, Mom. It’s the medication you were given.”
“They should not be allowed to get away with that.”
“Get away with what?”
“Giving people drugs that they aren’t sure of.”
“Some people have bad reactions to drugs, and some people don’t. Sometimes when they give people certain drugs, it’s the drug of last resort.”
“Did you just say ‘the drug of laughter?’”
“Yes, Mom. The drug of laughter.”
If there is a drug of laughter, it is sitting here with my mother, listening to her talk through the haze.
“I don’t feel like doing anything because I’m lazy.”
“You’re not lazy. You’re tired.”
“I really want to run down the road with you and pass everybody’s house in this town.”
“You do, do you? You want to run down the road with me? ”
“And with your sister. She knows everyone at the Senior Center, you know.”
“So you want all three of us to run down the streets of this town?”
“I’ll show ‘em by God!”
She’s cracking me up.
“What are we going to show ‘em, how stupid we look?”
“I want to look better.”
“I want to leave them smiling.”
“That’s a good goal.”
“You know there was a happening in my brain. I felt it. It felt like a stroke. That’s what I thought I had. I wonder if these stupid … you know they’re not very bright in this town?”
“That would be a good title for my book. ‘They’re Not Very Bright in This Town.’ I don’t care who reads it. When we die, they’re not going to remember who we were anyway. ”
The doctors said she was simply old and falling into dementia. I had a friend who told me about SIADH. I pestered the doctors. They said it wasn’t SIADH. Did they check? Can I see the labs? They did the labs after I asked to see the labs. She has SIADH.
“I wish I could tell you what happened to me, but I can’t remember it in any kind of order.”
“It doesn’t need to be in order. So, tell me, what happened to you. Off the top of your head. Don’t worry about the order.”
“I’m trying to remember. And I’m having a terrible time remembering.”
“Yes, I know. Your memory has been affected by all of this, and it’s going to get better.”
“I’m not doing this on purpose.”
“I know you’re not, Mom. No one thinks you’re doing this on purpose. There’s a reason for all of this.”
“Did I tell you there was a priest here and he gave me communion?”
“I told him I don’t remember when the last time was I had communion but he said he thought it would do me good.”
“I suppose a little Body of Christ never hurt anybody.”
“That’s exactly what I said. “
“Getting back to that other, to remembering. If I could have someone point out - you know, like how the corner of a page can be turned back?”
“I wish someone would dog-ear the page. And then you can pull it back like this” - she opens an invisible book - “and there’s a whole new scene.”
“You don’t see anything else, just what’s in that scene. And that’s the way I see it.”
“See what? Your memories?”
“I can’t go any further than that page. I’m stuck on one page, and I can’t turn from that page.”
“I don’t even know what’s on that page. They just don’t want me to remember.”
“Who doesn’t want you to remember?”
“I don’t know. Whoever put me here, a thousand miles from home.”
“Where are you that you are a thousand miles from home?”
“I don’t know the name of the place. Maybe I’m not even a thousand miles from home.”
“Where are you right now?”
“In this town.”
“Home is right down the street. ”
“So you’re not a thousand miles from home.”
“No, but it feels like it. ”
I wonder how many other old people fall into an unnecessary dementia, an undiagnosed SIADH? How many other old people feel like they’re a thousand miles from home?
“I’m worried about going home because I don’t know how to do anything.”
“You’re not going to go home until you can do things on your own.”
“I wonder what Medicare is thinking about this.”
“Medicare isn’t thinking anything, Mom. Medicare doesn’t have a brain.”
“It must be costing a fortune.”
“You don’t have to worry about that. That’s why you have Medicare, to cover all of this.”
“Well, I helped build the country, so I suppose I’m entitled to this.”
“How did you help build the country?”
“I wore a little red jacket and I carried a gun and I shot people.”
“When did you do this?”
“The Revolutionary War.”
“Okay. And what did you do in the War?”
“Were you fighting for the British or were you on the Colonial side? You said you wore a red coat.”
“It was just my old red coat. I fought on the Colonial side.”
“Where did you do your fighting?”
“In New Jersey.”
“Where in New Jersey?”
“Along the river. And then … I don’t know. ”
“If you were fighting in the war, were you a man, wearing a red coat and carrying a gun?”
“Don’t be stupid. I was a woman. I told you it was just my old red coat. The women did a lot in the war. The women went out on the battlefield bringing drinking water to the soldiers.”
“But you said you had a gun.”
“There were battles and you had to protect yourself. I killed people. ”
She was quiet a minute. I wondered what page she was stuck on.
“They were used to fighting wars back then. It was scary. It is still scary, how if someone wanted to, and they had the power, they could take us back there, take us away …. I don’t know where I’m going to end up.”
“Where do you want to end up?”
“Pretty much right next to you and to your sisters, my family, my daughters. That meant more to me, my family. It always did. And then when your sister died and we were forced to face who we really were, and where we were going…. ”
“Where are we going?”
“Well, we’re all dying. It is hard to know that. ”
“Yes, that is hard.”
“It was wonderful that you pulled away and created this world, this world that was totally different.”
“What do you mean? What world was totally different that I created?”
“You have created a world around you that is your own, a different world.”
“Different from what? From your world?”
“From this whole world of living. It’s all about attitude. And you have a different attitude. Your attitude changes more than your sisters’, more than theirs did.”
“I think you are out with people more, and you learn more about different angles and different people.”
“So you think my being out in the world is a good thing?”
“I think you are not afraid of what most people think.”
I laughed. That’s true.
I hadn’t cared what the doctors thought when I suggested they’d better go back to school and read up on SIADH.
“How can you come across anything with any meaning like that? It doesn’t make any sense as a piece of art.”
“That thing right there.” She points at the wall.
“Those are gloves, Mom. That’s a glove dispenser. It’s not art. ”
“It doesn’t look like gloves.”
“The nurses need to have the gloves handy, so they hang the dispenser on the wall.”
“Oh, I know they do.”
“But you don’t think it makes sense as a piece of art?”
“It isn’t a piece of art. It’s gloves.”
“The way they have it up there looks like it should be art. And that guy over there? He looks like he’s smiling.”
“That.” She points again at the wall.
“The hand sanitizer dispenser?”
“You can take anything you want and make art out of it.”
“Yes, I guess you can.”
“Well, you are making a lot of sense to me.”
“You’re crazy, too.”
“That’s for sure.”
“I need to get my energy back.”
“It will come.”
“This is another test. They’re going to find something else for me to do. Maybe jump fences.”
“You are going to jump fences? You mean, after we run down the streets of this town, we’re going to jump fences? On horses, I hope. ”
I’m laughing. She’s laughing.
“I wish I could get into that brain of yours, Mom. It sounds like you’re having a lot of fun, although I’m getting kind of tired thinking about all of that running down the street and jumping fences.”
“You know, the priest was telling me what time to come to church and where to park my car. And I said, ‘Wait a minute! Hold on a second! You’re crossing too many bridges!’ I told him that I’m just now having a nervous breakdown.”
“It’s not a nervous breakdown, Mom. You had one of those in 1968.”
“That wasn’t a nervous breakdown. I just pretended to be crazy in order to make it easier to divorce your father. I’m not pretending now, though.”
“I know you’re not, Mom. I know.”
“I don’t like being a thousand miles from home. What was it she said? There’s no place like home?”
“Right, Mom. There’s no place like home.”
“Maybe if I click my heels together three times?”
“It’s worth a try, Mom. It’s worth a try.”
My mother was finally diagnosed with and treated for SIADH. She is back living in her apartment in an assisted living facility where she plays cards with her friends, watches NCIS and Downton Abbey, and reads voraciously on her tablet. Her dementia was temporary. We know how lucky we are. Not all of us can click our heels together three times and return home.