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Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 5/27/10

I hear frequently from family caregivers that they are adjusting their loved ones medications (increasing/decreasing dosage or taking off, putting back on) because they know their loved one best and they believe that a particular situation is a direct result of the medication, etc.

Knowing this is wrong, I suggest to them to contact the physician before altering the medication regime at all.  I am unable to find printed information to show families that their actions are dangerous, potentially harmful, and possibly illegal.

Does anyone have suggestions about  this?

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Name: Adrian
Location: Seattle
Date: 09/16/2012
Time: 04:14 AM


The link provided by David from Washington, DC no longer works. There is a good resource on the same theme here:

Name: Jane
Location: Kansas City
Date: 06/01/2010
Time: 02:11 PM


I talked to my husband's doctor about a range of symptoms and "test values" within which I could change his medicines. Doctors do this all the time with sliding scales for insulin for diabetics but with lots of education for the family. I also asked his physician about a drug holiday: he was on 7 blood pressure medications at one time and the BP was not very well controlled. The physician asked me to keep a record of his BP twice a day and to call if it exceeded a certain level. After a month and one phone call, my husband's blood pressure was controlled with only 2 medicines instead of 7. I do not recommend altering drug routines without permission from the doctor. It just worked out for us I think because I worked with the doctor, not behind his back.

Date: 05/27/2010
Time: 04:56 PM


Well, considering that my wife was given Depakote by her new doctor without consulting me or her brother despite the horrendous side effects she experienced from this drug when her previous doctor tried it on her - well documented in her records, by the way - and that the side effects reoccurred and this time killed her...well, no, sorry: YOU are wrong. Doctors are human. And as such they can be as unthinking, arrogant and off-handed as any other mortal. Without the family as a buffer there would be even more deaths every year like that of my wife.

Name: Lisa
Location: Wilmington,Ohio
Date: 05/27/2010
Time: 12:47 PM


When anyone needs to stop and think and you know that you either don't have the time,or they aren't going to listen anyway,there is a really awesome tool to use.I learned about Zingers from a former monk of new skete in his book on Counseling Dog Owners...Pre memorize zingers,so that when a situation calls for a response,you have a line you can throw at them.For instance the checkout young man at the auto supply asked me if I knew of anyone who could fix his car cheap.Knowing an excellent mechanic who was moderate in his pricing,and a great troubleshooter,and honest,I mentioned him and his price,and the young man said that he couldn't afford it.I simply said"Cheap isn't going to get your car fixed".Continuing with our transaction,he said,wow that was really good advice,thankyou! A Zinger had worked again...So,something like" I didn't know you were a medical doctor!" or "I'm scheduling an appointment with their doctor and you,because they really need to know that you have started treating their patient without a license!" You get the drift,because that is a very stupid and dangerous thing to do.That's a good one"That is a very stupid and dangerous thing to do!.Please sit down and talk with me before you hand out any more medication(or withhold some)Before you hurt somebody!"

Name: David
Location: Washington DC
Date: 05/27/2010
Time: 11:10 AM


Check the National Institute on Aging website for the publication "Safe Use of Medicines" (

Name: Jennifer
Location: NC
Date: 05/27/2010
Time: 10:25 AM


I strongly recommend that no changes be made to medications without changing medications. Whether your loved one is in a care facility or at home. If your loved one is in a care facility, I would recommend that a note be made on the chart that no medications should be changed without first discussing this with family. While the family may have the best of intentions, medications, especially ones for Alzheimer's, blood pressure, heart disease and depression are very important and should not be stopped suddenly or discontinued without the supervision of a physician.

Name: Al Jones
Location: Flint, Michigan
Date: 05/27/2010
Time: 06:57 AM


I cared for my mother for 17 years, until she passed in 2004. About once a month I would take her off her medications for saturday and sunday, but not without her doctor's permission. By taking her off for 2 days, she seemed to be more alert for the next few weeks. So it did not hurt her, but it is crucial that her doctor was in formed and approved of it first.



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