I want to tell you a true story but first, a little background. For the purposes of this article, I want to assume that all cases of dementia, regardless of their cause, eventually end up in the same place. While there are always outliers and exceptions, the vast majority of the dementia patients I treated over the years could be broken down into two categories; happy dementia and paranoid dementia.
Mrs. “X,” a 78-year-old delightful female I had the pleasure of caring for 20 years, was in the 4 final stages of dementia. She was in the “happy” stage of dementia and she smiled at everything. Unfortunately, her dementia continued to worsen and, on this particular visit, she didn’t know me.
Her devoted daughter was with her at every visit and lived to care for her mom. Mrs. “X” had a cough and fever so her daughter brought her in. A careful history and exam led to a diagnosis of pneumonia and discussion of her treatment options and long-term prognosis.
Me – “Your mom has pneumonia and we’re going to start her on antibiotics. If her condition worsens, she’ll need to be hospitalized. I should see her in 2 days to evaluate how she’s doing.”
Daughter – “Can you call the prescription into Osco? Can I give her any cough meds?”
Me- “Absolutely, you can give her Tylenol and Mucinex if she needs something. I’m more concerned about her dementia. It’s getting worse; and, as we’ve discussed before, at some point you should consider withholding treatment and letting nature takes it course.”
At this point, let me interject the fact that this is one of the most difficult conversations a physician can have with a patient and their family. It was particularly difficult in the case of Mrs. “X” as she and her daughter were both delightful individuals who always brighten my day.
Daughter – “She’s so happy! She’s always smiling! We need to do everything humanly possible to keep her alive.”
Me – “I know she’s happy. What scares me is that the vast majority of patients I’ve cared for eventually transition to the paranoid stage of dementia. If we keep them alive long enough, they no longer know you and your family. They no longer can be cared for at home and end up in a nursing home, in restraints and on heavy doses of medications. It’s not fair but it’s reality.”
Daughter – “We’ll deal with it when we get there. For the time being, I want you to treat whatever you can treat.”
I agreed with reservations. My number one reservation was that Mrs. “X’s” dementia was progressing and there was nothing that could be done to stop it. Reservation number two was that Mrs “X’s” daughter had no idea how bad the paranoid stage of dementia could be!
Me – “When she’s better, you should start interviewing memory centers as eventually you won’t be able to manager her at home.”
Daughter – “I’ll think about it.”
Me – “I worry about you as much or more than I worry about your mom. If I can help you in anyway, let me know. Aren’t you do for a BP check?”
I hate nursing homes and every time I had to place a patient in a nursing home, it broke my heart. My family knows never to put me in a nursing home. If things get bad, I’ve instructed them to withhold treatment, put me in hospice and let me die at home.
Back to Mrs. “X”. She recovered nicely from her pneumonia. She developed recurrent pneumonias from aspiration of food particles and an incompetent cough. She developed recurrent urinary tract infections as well. Overall, she responded to treatment and remained in her happy state for the next few years.
Then it happened. Right off the pages of a Steven King novel, she developed paranoia. She complained bitterly that her daughter never visited her. She couldn’t understand why her daughter abandoned her. After all, she was a good mom, wasn’t she? During this time, she was still living with her daughter. Her daughter was in the exam room with her at every visit. When I pointed this out to her and introduced her to her daughter, she became agitated.
Mrs. “X” – I DON’T KNOW WHO THIS LADY IS BUT SHE’S NOT MY DAUGHTER! SHE’S NOT NICE TO ME! SHE MAKES ME TAKE PILLS! I THINK SHE IS TRYING TO POISON ME
We had finally arrived at paranoia. I never saw Mrs. “X” smile again. I never saw the happy Mrs. “X” again. Instead, I cared for a miserable sole locked in the prison of her demented brain. She was in a living hell.
Strangely enough, Mrs. “X” stopped getting pneumonia. She stopped getting urinary tract infections. She stopped getting sick and lived another 3 years. It was depressing as hell.
Mrs.” X’s” daughter was caught in this nightmare as well. Her days were spent trying to care for a hostile woman who did not know her and was afraid of her. She suffered from the chronic verbal abuse her daughter hammered her with on a daily basis. Despite everything, her daughter stayed with her till the end.
There are times when you just can’t win! If her daughter had withheld treatments while her mother was in the happy stages of dementia, she would have felt guilty when her mother died. Instead, she lived in hell for years and felt “RELIEVED” when her mother died. She ended up feeling guilty about feeling relieved.
In olden times, we died from pneumonia or other infections. We died at a younger age. Now, almost every disease is preventable or treatable and we die at an older age. The cost of living longer can be devastating as in this case. If you are suffering from a disabling disease or memory disorder, have an end of life discussion with your doctor and family.
Here’s your music and joke for the day.
Robert Benchley said, “Nothing is more responsible for the good old days than a bad memory.” (Think about it!)
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