In the home they have owned for more than 40 years, they live their lives as they always have. The same trees are visible through the kitchen window. The grass is still green. The grandfather clock given to them by her parents for their tenth wedding anniversary still chimes in the foyer. The curtains and the sofas haven't changed in years, and the silver flatware in the breakfront drawer still evokes memories of Thanksgiving dinners, birthdays, and family gatherings galore. From the kitchen linoleum to the wood paneling in the family room, little has changed in this cozy suburban home.
While the outward appearances are relatively static, it is her dementia that has permanently changed the calculus of their relationship. It began with mild, transitory forgetfulness, only to slowly escalate into full-blown dementia as the months went by without a formal diagnosis. She would walk into a room and stand there, utterly stumped as to why she was there. He would leave her in the frozen food aisle to look for light bulbs in another part of the grocery store, and when he would return to find her, she would still be there, staring blankly at the ice cream display, apparently lost in thought but actually lost in the absence of cohesive thought.
At a certain point, it was apparent that she could not be alone. She could no longer bathe herself, toilet herself, dress herself, or make even the most rudimentary decisions. Luckily, if a plate of food is placed before her, she will still reflexively use her fork or spoon to scoop up food and bring it to her mouth. Sometimes, the fork spears nothing but air and she must be redirected to bring it down to the plate again. At other times, the food will fall back to the plate or into her lap, but she won't notice. She will bring an empty spoon to her mouth with the same motion and intention as a spoon laden with mashed potatoes. She doesn't recognize the difference, and he monitors her intake with the eyes of a loving, doting husband of 55 years.
He has refused all assistance other than skilled nursing and physical therapy. A home health aide? Never. Meals on wheels? Not a chance. Day care? Unthinkable. She is his project, his object of devotion, the love of his life and the mother of their children. His days revolve around her, and he revolves around her like a moon around a planet with a strong gravitational pull.
Her eyes seem aware, yet it is not clear what they register. She responds to some questions but not others, and it is uncertain how much of her response is reflexive rather than real. Her shuffling gait, her blank gaze, her apparent lack of interest in anything happening around her---these are hallmarks of her state of mind, and he must long for the days of lively conversation and verbal interplay. How lonely he must be, prematurely bereft of his friend, his lover, his bride.
"You see how her hair is set?" he asks. "Friday is Hair Day," he explains. "I wash it, set it, dry it, and then brush it out and spray it. Just like she used to do. We make her beautiful for the weekend when the kids and grandkids come to visit." He smiles proudly.
Sitting in the chair, her hands passively resting in her lap, she stares at me, smiles, and almost looks through me. I hold her hand, tell her I would like to take her blood pressure, and she raises her arm and places it on the table. I thank her for her assistance. She smiles again.
Placing the tools of my trade in my bag after making some final notes, I shake her hand and get up to leave. Her husband walks me to the door and we shake hands warmly.
"You're the model husband, and I can see that she's receiving the best possible care here at home," I say as we shake hands.
"Thank you," he replies. "I try my best. She's all I have, and I want her here with me."
"Let us know if you need more help," I say as I enter the breezeway between the kitchen and the garage. "You're doing a wonderful job and she looks so well-cared for. Take care, and her primary nurse will be back on Tuesday to check that elbow."
"Bye bye, and thanks for coming over." He waves and closes the door.
What other slow and silent human dramas are occurring in the other well-kept homes on this quiet street? How many other spouses are devoting their every minute to the care of a beloved who is no longer quite as healthy and vibrant as they used to be?
Devotion and love are the engines that drive relationships and lead us to selflessly focus our energies on the human objects of that love. Here was a stellar example of how that type of deep, lifelong connection manifests in real life. Despite the sadness and loss that underlie such a situation, the human manifestation of that devotion and love is truly an inspiring sight to behold and an honor to witness.
Showing posts with label dementia. Show all posts
Showing posts with label dementia. Show all posts
Saturday, October 18, 2008
Tuesday, December 05, 2006
Bang Head Here
In yesterday's post, I wrote of a patient with dementia who is driving me to repeatedly connect my forehead with the nearest wall. Today, my bruised forehead is crying, "Uncle!"
As I described last night, my patient eventually arrived to the hospital after much hemming and hawing. He reportedly made it through the night---with some complaining--after undergoing some bloodwork, a chest x-ray and a CT-scan of the head. This morning, I arrived at the hospital with my Nurse Practitioner colleague and we read through the patient's chart. He was not in his bed, and we assumed that he was downstairs for his brain MRI and lumbar puncture. I noticed some discrepancies in the chart, left a note with my cell-phone number, and we were on our way.
Two hours later I receive a call that said patient actually left the hospital---without a word to anyone---in a cab this morning in the company of his son who had spent the night with his father in the room. That was the first strike of the ol' forehead against the wall. I was then informed that he would lose the bed entirely if he did not return immediately. They had not deemed him a "flight risk" and the examining doc found him "competent". "How could he be competent when he thinks he bought a plane in Puerto Rico yesterday?" I retorted. There was stunned silence on the other end of the line. I banged my forehead again. Harder.
I began to work the phones. No answer at the home phone but I managed to reach the patient himself on his nephew's cell. To wit:
"Where are you? You're supposed to be in the hospital."
"I had to come home. I was going to lose my apartment, and the plane that I bought in Puerto Rico."
"You aren't well, and you have to come back now. Put your wife on, please." I tried to be patient, I really did.
"Hello?" said his wife.
"Why isn't he in the hospital? He's not well. You can't let him make decisions like this."
"I don't know what to tell you," she replied.
"Well, I'll just tell you that he needs to be back at the hospital immediately."
"OK, we'll go now."
I continue with my day, paging the attending doctor that he is on his way back to the hospital and they should hold the room. I call the Infectious Disease doc who deemed him competent and I suggest a real psych evaluation for competency and a sitter in the room for the duration. I also point out discrepanices I noted on the inpatient med list.
An hour passes. And another. My forehead begins to feel better.
My cell phone rings. It's the Infectious Disease doc.
"Keith, I'm afraid I have bad news."
I prepare my forehead for further abuse.
"He came back to the floor, and we told him to settle in his room. He asked if he could go out to smoke, and the charge nurse told him he'd have to wait 30 minutes until everything was in order. When she returned to the room, he was gone. That was an hour ago."
I put the call on hold, brace my hands against the wall, and continue making a lovely dent in the sheetrock wall next to my desk. There's probably chips of paint stuck to my forehead by now. Should I switch to a filing cabinet?
I call the patient again, and the family is at a loss as to why he left again, who was with him, and why they allowed this demented person who thinks he owns a plane in San Juan to leave the hospital. I explain that his chest x-ray was abnormal, he needs a brain MRI, a CT scan of the chest, a lumbar puncture, and his serum ammonia level is high, dangerously so.
"We'll bring him to the clinic tomorrow" is all they say.
"OK, that will have to do." I finally give in. What more can I do?
"He must come in tomorrow to see our infectious disease specialist---no excuses." I hang up the phone.
Oh, my aching head. Maybe I should switch to meditation and abdominal breathing. But the feeling when my head hits that wall is just so satisfying........
As I described last night, my patient eventually arrived to the hospital after much hemming and hawing. He reportedly made it through the night---with some complaining--after undergoing some bloodwork, a chest x-ray and a CT-scan of the head. This morning, I arrived at the hospital with my Nurse Practitioner colleague and we read through the patient's chart. He was not in his bed, and we assumed that he was downstairs for his brain MRI and lumbar puncture. I noticed some discrepancies in the chart, left a note with my cell-phone number, and we were on our way.
Two hours later I receive a call that said patient actually left the hospital---without a word to anyone---in a cab this morning in the company of his son who had spent the night with his father in the room. That was the first strike of the ol' forehead against the wall. I was then informed that he would lose the bed entirely if he did not return immediately. They had not deemed him a "flight risk" and the examining doc found him "competent". "How could he be competent when he thinks he bought a plane in Puerto Rico yesterday?" I retorted. There was stunned silence on the other end of the line. I banged my forehead again. Harder.
I began to work the phones. No answer at the home phone but I managed to reach the patient himself on his nephew's cell. To wit:
"Where are you? You're supposed to be in the hospital."
"I had to come home. I was going to lose my apartment, and the plane that I bought in Puerto Rico."
"You aren't well, and you have to come back now. Put your wife on, please." I tried to be patient, I really did.
"Hello?" said his wife.
"Why isn't he in the hospital? He's not well. You can't let him make decisions like this."
"I don't know what to tell you," she replied.
"Well, I'll just tell you that he needs to be back at the hospital immediately."
"OK, we'll go now."
I continue with my day, paging the attending doctor that he is on his way back to the hospital and they should hold the room. I call the Infectious Disease doc who deemed him competent and I suggest a real psych evaluation for competency and a sitter in the room for the duration. I also point out discrepanices I noted on the inpatient med list.
An hour passes. And another. My forehead begins to feel better.
My cell phone rings. It's the Infectious Disease doc.
"Keith, I'm afraid I have bad news."
I prepare my forehead for further abuse.
"He came back to the floor, and we told him to settle in his room. He asked if he could go out to smoke, and the charge nurse told him he'd have to wait 30 minutes until everything was in order. When she returned to the room, he was gone. That was an hour ago."
I put the call on hold, brace my hands against the wall, and continue making a lovely dent in the sheetrock wall next to my desk. There's probably chips of paint stuck to my forehead by now. Should I switch to a filing cabinet?
I call the patient again, and the family is at a loss as to why he left again, who was with him, and why they allowed this demented person who thinks he owns a plane in San Juan to leave the hospital. I explain that his chest x-ray was abnormal, he needs a brain MRI, a CT scan of the chest, a lumbar puncture, and his serum ammonia level is high, dangerously so.
"We'll bring him to the clinic tomorrow" is all they say.
"OK, that will have to do." I finally give in. What more can I do?
"He must come in tomorrow to see our infectious disease specialist---no excuses." I hang up the phone.
Oh, my aching head. Maybe I should switch to meditation and abdominal breathing. But the feeling when my head hits that wall is just so satisfying........
Monday, December 04, 2006
Consternation and Potatoes
Things seemed to be improving. I wrote of his situation recently and was encouraged by some signs of improvement reported by his wife and the visiting nurse. Now, things just seem to be going downhill.
A call from the visiting nurse today informs me that he is increasingly unsafe in the home, the family not really coping as would be desired, and the patient's health at risk. Nightmares, violent dreams, wandering through the house at night, smoking in bed---not very good signs, I fear.
So, many telephone calls later, and we manage a direct admission to the hospital without a trip to the emergency room. Not an easy task. The primary doctor pulled some strings and I received a harried call at 1pm that a bed was ready and the patient needed to get down there as soon as possible. I reached his wife, and she agreed to get him there within the hour.
Five hours later, I'm washing potatoes for dinner and my cell phone rings. The Caller ID shows me that it's the hospital. "Oh good," I think, "the admitting doc is calling me for my input." Maddeningly, it's the Admissions Department. The patient never showed and the bed will be given to the next patient forthwith.
I call my patient's family. "Oh, he's out with his nephew," is the response I receive from a rather blase family member. "Do you want his cell phone number?" The potatoes need cutting but I'm steaming mad.
One call to the aforementioned cell-phone yields the information that the patient wants to go "tomorrow". The nephew says, "He's tired."
"First of all," I said, "do you realize how much work went into getting this bed for your uncle? Second," I continued, "just this morning, he insisted that he bought a plane in Puerto Rico yesterday. Are you giving him control over when he goes to the hospital when he can't even feed himself and thinks he's in San Juan? Aren't you all even a little worried?"
"I'll have him there in forty minutes," he responds.
I resume preparing the potatoes and Mary comes home to see the look of consternation on my face. In some ways, it's no different than my patient who just didn't show up for her cholecystectomy and liver biopsy. "I was busy," she said when I called her, incredulous that she would no-show for surgery.
Sometimes I wonder what it is we're doing. Sometimes I wonder what my patients and their families are thinking. Sometimes I would like my forehead to make repeated contact with a nearby wall. Sometimes I wonder what it would be like to wash potatoes from 9 to 5.
At any rate, my hope is that by the time I post this missive, my demented patient is happily or unhappily ensconced in a safe hospital bed, and the grand neurological work-up can commence. Meanwhile, I'll get some needed sleep and leave the forehead banging for another day.
Small potatoes in the bigger picture? Sure, but at times like these, there's nothing like a blog when one needs to kvetch.
A call from the visiting nurse today informs me that he is increasingly unsafe in the home, the family not really coping as would be desired, and the patient's health at risk. Nightmares, violent dreams, wandering through the house at night, smoking in bed---not very good signs, I fear.
So, many telephone calls later, and we manage a direct admission to the hospital without a trip to the emergency room. Not an easy task. The primary doctor pulled some strings and I received a harried call at 1pm that a bed was ready and the patient needed to get down there as soon as possible. I reached his wife, and she agreed to get him there within the hour.
Five hours later, I'm washing potatoes for dinner and my cell phone rings. The Caller ID shows me that it's the hospital. "Oh good," I think, "the admitting doc is calling me for my input." Maddeningly, it's the Admissions Department. The patient never showed and the bed will be given to the next patient forthwith.
I call my patient's family. "Oh, he's out with his nephew," is the response I receive from a rather blase family member. "Do you want his cell phone number?" The potatoes need cutting but I'm steaming mad.
One call to the aforementioned cell-phone yields the information that the patient wants to go "tomorrow". The nephew says, "He's tired."
"First of all," I said, "do you realize how much work went into getting this bed for your uncle? Second," I continued, "just this morning, he insisted that he bought a plane in Puerto Rico yesterday. Are you giving him control over when he goes to the hospital when he can't even feed himself and thinks he's in San Juan? Aren't you all even a little worried?"
"I'll have him there in forty minutes," he responds.
I resume preparing the potatoes and Mary comes home to see the look of consternation on my face. In some ways, it's no different than my patient who just didn't show up for her cholecystectomy and liver biopsy. "I was busy," she said when I called her, incredulous that she would no-show for surgery.
Sometimes I wonder what it is we're doing. Sometimes I wonder what my patients and their families are thinking. Sometimes I would like my forehead to make repeated contact with a nearby wall. Sometimes I wonder what it would be like to wash potatoes from 9 to 5.
At any rate, my hope is that by the time I post this missive, my demented patient is happily or unhappily ensconced in a safe hospital bed, and the grand neurological work-up can commence. Meanwhile, I'll get some needed sleep and leave the forehead banging for another day.
Small potatoes in the bigger picture? Sure, but at times like these, there's nothing like a blog when one needs to kvetch.
Wednesday, November 29, 2006
Of Demons and Dementia
"Do you remember who I am?" I ask.
He looks at me quizically. I can tell his brain is working overtime. He's lying in his bed, a Batman DVD playing with the volume low. The Joker fires guns and Batman saves the day.
"You're my friend," he replies uncertainly.
"That's right, I am," I smile into his eyes. "But I also have a name that you know."
With a little prompting, he actually comes up with my name. He shakes his legs under the covers in childlike delight when I tell him he got it right. He seems so innocent, so pure.
He looks at me in earnest. "I was in Puerto Rico yesterday. I bought a dog and an airplane."
"Wow," I respond. "I thought you said you were in Puerto Rico on Sunday."
"I went back again and bought the airplane. I paid the guy a hundred bucks and I fixed the engine. "
He has AIDS dementia. Classic. Virus completely suppressed for years. Some changes to his white matter but no masses or lesions. People didn't used to live this long with a suppressed virus, so we're flying by the seats of our pants. He complained of devils and battled with them in his dreams. (Does watching violent movies help this situation?) An antipsychotic made him hallucinate. Now we'll try some steroids to decrease what we assume is brain swelling (he has a history of cerebritis). I'd love to take him to an acupuncturist or a naturopath. Maybe a shaman would be of service. But insurance doesn't cover such luxuries, so we have to use the tools at our disposal, thus more meds. We will eventually watch him slip away. Meanwhile, a local priest pays visits and helps to keep the demons at bay through faith and prayer. Maybe watching Animal Planet would be better.
Another patient also shows signs of AIDS dementia, but his virus is not suppressed and never has been. He can't tolerate meds well, has a history of poor compliance with treatment, and the virus has mutated exponentially in his bloodstream. Pockets of various strains are probably biding their time in distant corners of his body, waiting for a chance to circulate and propagate. His brain has been attacked by toxoplasmosis a number of times, and other illnesses have plagued him over the years. How long can he hold on? This weekend, devils sat on his shoulder and tormented him. A visit to church helped to calm his hijacked mind. The best we can do is treat the virus, keep it as suppressed as possible, support him in his compliance to meds, and send him to a therapist for treatment of his underlying depression and PTSD. The more serene and clear his mind from day to day, the less painful psychic torture he'll endure.
When faced with such conundrums of suffering, one can only be grateful for the small things that make life worth living. These gentleman are peaceful warriors, and we simply provide some tools for the battle, the least of which is a smile and a kind word. Love, after all, may be the best medicine around.
He looks at me quizically. I can tell his brain is working overtime. He's lying in his bed, a Batman DVD playing with the volume low. The Joker fires guns and Batman saves the day.
"You're my friend," he replies uncertainly.
"That's right, I am," I smile into his eyes. "But I also have a name that you know."
With a little prompting, he actually comes up with my name. He shakes his legs under the covers in childlike delight when I tell him he got it right. He seems so innocent, so pure.
He looks at me in earnest. "I was in Puerto Rico yesterday. I bought a dog and an airplane."
"Wow," I respond. "I thought you said you were in Puerto Rico on Sunday."
"I went back again and bought the airplane. I paid the guy a hundred bucks and I fixed the engine. "
He has AIDS dementia. Classic. Virus completely suppressed for years. Some changes to his white matter but no masses or lesions. People didn't used to live this long with a suppressed virus, so we're flying by the seats of our pants. He complained of devils and battled with them in his dreams. (Does watching violent movies help this situation?) An antipsychotic made him hallucinate. Now we'll try some steroids to decrease what we assume is brain swelling (he has a history of cerebritis). I'd love to take him to an acupuncturist or a naturopath. Maybe a shaman would be of service. But insurance doesn't cover such luxuries, so we have to use the tools at our disposal, thus more meds. We will eventually watch him slip away. Meanwhile, a local priest pays visits and helps to keep the demons at bay through faith and prayer. Maybe watching Animal Planet would be better.
Another patient also shows signs of AIDS dementia, but his virus is not suppressed and never has been. He can't tolerate meds well, has a history of poor compliance with treatment, and the virus has mutated exponentially in his bloodstream. Pockets of various strains are probably biding their time in distant corners of his body, waiting for a chance to circulate and propagate. His brain has been attacked by toxoplasmosis a number of times, and other illnesses have plagued him over the years. How long can he hold on? This weekend, devils sat on his shoulder and tormented him. A visit to church helped to calm his hijacked mind. The best we can do is treat the virus, keep it as suppressed as possible, support him in his compliance to meds, and send him to a therapist for treatment of his underlying depression and PTSD. The more serene and clear his mind from day to day, the less painful psychic torture he'll endure.
When faced with such conundrums of suffering, one can only be grateful for the small things that make life worth living. These gentleman are peaceful warriors, and we simply provide some tools for the battle, the least of which is a smile and a kind word. Love, after all, may be the best medicine around.
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