(11/19/14) As I walked down the hall of the dementia ward to have breakfast with my mother on Sunday, Nov. 9, I heard screams, sobs and moans. When I entered her room, she was pointing at the ceiling crying, "No! No!" When I bent over to hold her, she began yelling in an indistinguishable language, grasping my blouse and pulling me close to her face. "AHHHHH, AHHHH," she shrieked. She clutched her distended abdomen and grimaced, She was crying, but then she suddenly stopped, looked startled for a moment, and then began laughing in a shrill, Wicked Witch of the West fashion. "You," she said. "Oh honey!" She pulled me down onto the bed with her, and I held her while she jerked and trembled.
Here we go again. I had seen delirium before, and I had no doubt that my mother was in the acute phase of this disturbing condition. If it's treated early enough, it can be resolved within 8-12 hours.
But thanks to the apathy, cynicism and incompetence of the staff at this $74,000 a year facility, that's not what happened. Now, 11 days later, she is in the hospital, pouring gargantuan blood clots out of her rectum. "End of life" options are on the table. There may well be charges of negligent homicide if she isn't saved.
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| Before the delirium, radiant and beautiful. |
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| My mother: moaning, screaming, crying, hysterically laughing. This was taken after she had gone to the hospital and improved considerably. |
"In the middle of the night," they told me.
"She needs to be tested immediately for a urinary tract infection," I told them. "Please get the nurses in here."
Urinary tract infections (UTIs) are the most common cause of delirium, which is a condition that increases mortality, and expedites the downward spiral of dementia. It is very destructive to the brain as a whole. My father had it three times, each episode caused by a UTI, and in each case, the delirium was resolved by the morning after he took his first antibiotic.
Like my mother, he had jabbered nonstop in a frantic jargon that made no sense to anyone but him. Like her, he saw huge spiders on the ceiling which crawled down and covered the bedroom floor. He was so terrified, his knees buckled when he tried to get up to use the toilet. Joe and I carried him in, and Joe held him up while I cleaned him off.
For both of them, it was a harrowing experience, far more traumatic than dementia, even if you realize you have dementia.
"I know that!" I said. "But it hurts for about 30 seconds. The delirium has been tormenting her for days now."
I received an order from the executive director to stop "haranguing" his staff. "Let our experts do their jobs," he said testily.
"JUST GET A URINE SAMPLE, GODDAMIT!" I CRIED. SHE ALMOST CERTAINLY HAS A URINARY TRACT INFECTION. IT CAN BE TREATED IN NO TIME!!"
As usual, he ignored my "disruptive behavior."
MORE OF MY BITCHY MEDDLING
From that first day, Sunday, when I discovered her condition, through the following Saturday, I sent at least one and more often two or three emails every day to people, pleading that my mother be tested for a UTI. I was informed on Thursday that an outside Nurse Practitioner had come in to see my mother the previous evening.
"Did she get a urine sample?" I asked.
"I don't think so -- she just prescribed more meds to calm your mom down."
My mother had been subdued, all right. All of the behaviors of delirium were still manifest, but she had been weakened by the drugs so that she was whispering in her new, inscrutable language, instead of screaming. She was still hallucinating, but at least she was no longer "disruptive."
The writhing, grimacing, pointing at invisible terrors, crying and unprovoked laughter continued. She was anguished, confused and frightened. Every day, she clung to me, as the jerks and spasms wracked her body.
One day, a med tech rattled off the list of pharmaceuticals that were being administered to my mother, who has refused even to take an aspirin throughout her whole life. There were seven. I wish I had been expecting this outpouring of information, so I would have been prepared to pay more attention. Only the last two registered in my brain, Haldol and Nembutal, both used for “behavior management.” Obviously they should have been diagnosing
and treating her problem – not trying to mask it with sedating drugs. Nembutal is a barbiturate that can cause "marked depression, and confusion" in elderly patients.
Haldol is not approved for use in
older adults with dementia because of increased chances of death during
treatment. Common side effects of Haldol are nausea, vomiting, diarrhea, dry
mouth, nervousness, spontaneous eye movements, mood changes, breast
enlargement, difficulty urinating, and occasional movement disorders.
A full week after my mother exhibited obvious symptoms of delirium, she was taken by ambulance to the hospital after fainting from dehydration. Within 20 minutes, she had been diagnosed with a UTI and was immediately put on antibiotics. Her dehydration was yet another example of institutional negligence. When she was admitted, offcials were informed that she was chronically dehydrated and needed frequent promptings to drink more liquid. They had failed to do this so badly that she became unconscious. The hospital put her on IV fluids, in addition to the antibiotics. By this time, she had been so depleted by the infection and the delirium that she seemed to be near death.
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| "Anguish" by Archan Nair. |
As of today, she has been in the hospital for four days to treat a condition that could readily have been cured eight days ago. She remains in a state of delirium that is so pronounced, she seems to belong in a psychiatric ward. She seems psychotic. This in contrast to my father's experience: He was promptly diagnosed with a UTI and treated with antibiotics. Eight hours later he was fine.
Hospitals are dangerous places, and are particularly traumatic for elderly people. My mother refuses to eat the jello, sweetened yogurt and cream of wheat that are all that is offered for her breakfast. She is pale and concave. She is very gradually seeming less delirious, but far more more demented. This morning, she told the nurses she had baked two dozen whole wheat rolls the day before.
Then she asked me, "Does Daddy know where I am?"
Hospitals are dangerous places, and are particularly traumatic for elderly people. My mother refuses to eat the jello, sweetened yogurt and cream of wheat that are all that is offered for her breakfast. She is pale and concave. She is very gradually seeming less delirious, but far more more demented. This morning, she told the nurses she had baked two dozen whole wheat rolls the day before.
Then she asked me, "Does Daddy know where I am?"
"He died, Mama, more than four years ago," I reminded her.
She began crying.
"Mama, remember how happy you became after that, living by yourself, and feeling 'free as a bird?" I added.
"Oh, you mean your Daddy -- I was talking about mine," she said. "As long as we're all together, here on the cruise ship, it will be OK. You can have all the mangoes you want."
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| by Javier G. Pacheco |
I ALMOST FAINTED
This morning, when
the nurses took off her blankets to turn her (bedsore prevention) we were met with a
horrifying sight: between her legs was a large, deep pile of blood clots, with
the blood spreading over a substantial area, and covering her thighs, down to her knees. While the nurses were cleaning her
up, I asked where the clots were coming from. The nurse said it was severe rectal bleeding. My mother, amid all her garbled words during her delirium, had mentioned "anus" and "rectum" several times to me while we were still in the dementia facility. I told the aides and the med tech that she had fecal material under her fingernails. The opiate drugs they were giving her had caused such terrible constipation that she had been trying to dig it out with her hands. I had no idea that she was doing so much internal damage.
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| "Anguish" by TeeLamb |
Her
hematocrit level had plunged because of the blood loss, and a transfusion was ordered. They wouldn't let me give my blood to her. "New policy."
THE IMPORTANT THING IS THAT if the transfusion doesn’t
work, and she keeps hemorrhaging, do we just “let her go”? Of course not, if it were up to me. My mother is still a deep, joyful, compassionate, engaged person -- despite her memory issues -- and her life is worth living. That is my position, and it is certainly hers.
For the time being, though, she and I have no say in the matter. My POA has been challenged by those with suspect motives, and all I can do is hope.
UPDATE Nov. 22, 2014: Now, two weeks after the delirium first manifested itself, my mother has been moved to a rehab facility -- frail, confused and in pain. All because of the laissez-faire, don't-make-waves attitude of her current "guardians," and the gross incompetence of the dementia facility's "medical team."
UPDATE, Nov. 24: My mother is weaker, more confused and more depressed than I have ever seen her. I am feeding her by hand; otherwise, she refuses to eat at all. The food at the fancy rehab place is crap, but at least it has calories.
UPDATE, Nov. 26: My mother's gentleness, charm and sense of humor have been entirely overwhelmed by her situation. She is irritable, complacent, limp. She is being administered an anti-anxiety drug that makes her sleepy and weak. I have lodged a complaint about this.
Today, my mother contradicted almost every statement she made, or denied saying it at all. She refused to eat. "I don't care if you come or not," she told me. I got up and left. This experience has shattered her temperament and her will to live.
UPDATE, December 9: My mother has made no progress, either in regaining her strength and ability to walk, or in her mood. She seems completely lost.
UPDATE Dec. 25, 2014: Mama is somewhat less hostile and irritable, but her mind is shot. She is talking about hot-air ballon rides, visiting her grandmother (who died 80 years ago), and being briefly taken hostage by the aides who are "a criminal gang from South America." She said she drove to the mall last night, but the bottom fell out of her car. She cannot finish a sentence, and she can answer only the simplest yes or no questions. I don't know whether some shred of the delirium remains, or whether it simply sped up -- with astonishing speed -- her decline into dementia.
UPDATE Jan. 18: At last, my mother brightens again when I arrive each day for breakfast. She seems to enjoy my companionship, but she has little to say, and she is unable to complete a sentence. She seems vaguely aware of the people around her but -- unlike her behavior before the delirium -- she expresses no interest in them (even when their behavior is extreme and/or alarming) and has no interaction with them. Before the delirium, she was interested in and curious about people's appearances, behavior and personalities. She expressed warmth and admiration for the conscientious, attractive aides. She often asked me what was wrong with various other residents, or commented on their attire. That power of observation is gone. She is intermittently oblivious even to me as I sit with my arm around her, slipping into her own world. She eats very little, and about two thirds of each breakfast is contrary to her nutritional needs and principles. I have asked that she be given oatmeal instead of the overly sweet, artificially flavored & colored cream of wheat, and I have requested whole-wheat toast rather than the dense white-flour pastry with white icing. Aides assure me that her meal plan will be revised to incorporate these requests, but this has not been done. She expresses no willingness to work at being able to walk again, even though she tells me she realizes this would increase her likelihood of moving back home, which "of course" is what she prefers. "I don't belong here," she says of the institution.
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| Before the delirium, she remained beautiful and lucid. |
Believe it or not, she was beautiful, vivacious, curious and responsive just three weeks ago. Here's what a devastating medical screw up can do to you:
