Dementia without medication

In 2013, a nursing home in Maine eliminated the use of antipsychotic drugs from their dementia ward. That same year, a New York facility went from 38% in 2009 to 11% of their patients on them.  In 2015, California reported only 15% use of the mind-numbing, fog creating meds to subdue people in memory facilities.

In 2012, the Federal Government started regulating the use of antipsychotics in nursing homes. Several studies had shown that use of these drugs caused falls, strokes and even death. Could it possibly be that geriatric psychiatrists are now beginning to see that it is not only possible, but preferrable, to care for the elderly with memory issues in more – yes, I’ll say it – humane and thoughtful ways?

There are no FD&A approved medications for the treatment of physical aggression or resistive behavior, and so nursing homes have traditionally used antipsychotic drugs.  It is not uncommon to see people snoozing in the corner or staring unblinking at the ceiling, babbling incoherently.  I saw this first-hand when I worked in one at the tender age of 17, and I will never forget the images of those poor souls. Those drugs, hidden in applesauce and rolled inside pieces of bread to insure they are ingested, are in my opinion, more for the convenience of the attendants, and less for the comfort of the individual.

There is a person in there who may resent having to wake at a specific time, bathe on schedule and eat meals that are often cold, tasteless and unpalatable.  There is a person in there who cannot tell you what he/she wants, cannot share what he/she thinks, who believes they are stupid and clumsy and worthless because they spill things and forget to ask to go to the toilet.  There is a person who has to endure the humiliation of being stripped naked to wash or dress and who cannot stop the poking and prodding that people are doing to them. They can’t get anywhere without help – they cannot leave the building, or the room, or the bed by themselves, but they are still people inside their silent, frustrating world. And we presume that to put their mind to sleep is the best thing we can do for them.  Shame on us!  And bravo! for the enlightened people who are promoting real care and going against the grain of commonplace thinking!

I was going through some papers the other day, and found a prescription that I never filled for my mother.  Back in 2012 before Mom came to live with me and before I discovered that her behavior was more the result of roller-coaster insulin levels from her terrible eating habits and a ferocious UTI (I had to demand that the doctor test her for it), I took her to a psychiatrist for exactly two visits. From what I was hearing from other caregivers and reading on the Internet, Mom’s craziness was only going to get worse. Between trying to keep her happy and safe, juggling an impossible workload with travel demands, I began to think that perhaps I should follow the advice of well-meaning friends.

I had not yet realized that the angry, hurtful things Mom said to me were often fabricated from things she had seen on television or thought about during the day. I didn’t know that there was such a thin veil between reality and imagination, and I kept trying to regard what she said as logical and coming from the mouth of an adult – from my mother who wouldn’t lie.  Boy, did I have a lot to learn!

The first visit to the ‘shrink’ was an eye-opener for me. Remember, I was not brought up with all this MD stuff, and to see a waiting room filled with people who were squeezed into 10-minute meetings with the doctor and emerged from that meeting simply with a prescription, was quite an education.

My mother was funny though.  She asked Dr. M if she was yawning so much because she was bored, or because she was sleepy.  Then she proceeded to tell her that she should go to bed earlier.  “How can you take care of patients when you are too tired to even look at them when they speak to you?”  I think Dr. M took an instant dislike to my mom.  She wrote out a prescription, which I did fill, but after researching the drugs online, I opted to give her Tic-Tac mints which I told her were the Rx and which would make her feel more relaxed. Yes, I lied to her. But it worked like a charm.

At the second appointment, Dr. M listened to my mother in horror as she accused me of being a whore, said that there were men coming in and out of her bedroom all night, and that the man I thought was my father, was in fact not my Dad.  Dr. M took me aside and said that often the elderly have blocked out events in their early life, and the likelihood is that my mother was an abused child.  I vehemently disagreed as I knew my mother was as pure as the driven snow on her wedding night and always behaved in a manner that was unreproachable. Dr. M handed me a prescription for Seroquel.  I took the paper, paid the bill, gathered up my mother and her belongings and left that office for the last time.

I went home and looked up the medication online.  On a site called drugs.com, I read with horror the words, “Seroquel FDA prescribing information – side effects and uses.” And then, in bold letters: “WARNING: INCREASED MORTALITY IN ELDERLY WITH DEMENTIA-RELATED PSYCHOSIS; AND SUICIDAL THOUGHTS AND BEHAVIORS.” Additionally, the side effects of Seroquel were listed as possible “mood or behavior changes, constipation, stomach pain, upset stomach, nausea, vomiting, drowsiness, dizziness, tiredness, headache, trouble sleeping, dry mouth, sore throat, breast swelling or discharge, missed menstrual periods, increased appetite, or weight gain.”

Who in God’s name would give their mother a drug like that? Not me, that was for sure!

In retrospect, perhaps that experience was a positive one for it started me on my quest for additional ways to care for my mother without medical intervention, which as a Christian Scientist was the way she would want it. I may have wavered a bit with concern that I was neglecting her needs, but on closer examination, I see that her path/our path is the one we will follow with complete confidence. She and I are in full agreement.

It led me to connect my earlier research on ADHD/ADD and the role of nutrition with Alzheimer’s and Dementia.  It helped me to recognize the slow retreat into childhood, the need for patience but firmness in dealing with Mom, and the value of plain old food and pure water coupled with lots of love and understanding. It started me on the road to a non-gluten diet, which ultimately became an occasional-grain diet, and in 2016 I am grateful to see that I am no longer alone in my beliefs.

I can’t say that I succeed all the time, but I know Mom is much better off here with me, even if my own life has been sharply affected.  She’s sweet and cooperative and we have, for the most part, peaceful, if uneventful days. As I’ve told her many times, “People have been getting old for thousands and thousands of years, and their loved ones have cared for them just like I’m doing for you.  It’s only recently that folks have been shuffled off and drugged, and left alone without family.  We’re just doing what comes naturally.”

Links:

KQED/NPR/Keiser Health News: 

Calming Dementia Patients Without Powerful Drugs

Government Report

https://oig.hhs.gov/oei/reports/oei-07-08-00151.pdf

 

 

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