I copied this post from my mother’s blog, http://annromick.wordpress.com/. She writes about her trials and tribulations of being the primary caregiver for my father who is stricken with Alzheimer’s. This particular post is important to everyone who is on medication.
Remember the old black and white movies where the kindly pharmacist of long, long ago worked in his small cubicle mixing a concoction of whatever he kept in his vast assortment of apothecary jars? Finishing the magic potion he placed the medicine in a small paper sack, slid it across the counter to the ailing customer with whom he had been acquainted since the man was a lad, and quipped. “Here you go, Sonny. This’ll either cure ya, or kill ya.”
Todays multi-purpose pharmacies would go unrecognized if compared to the simple corner Drug Stores of old, small and uncluttered by racks of groceries, sweat shirts and motor oil. Yesteryears Drug Stores sold drugs, with the possibility of also having the best soda fountain in town manned by an adorable soda jerk whose voice changed with his every word. The modern, ultra-streamlined facilities of now often feature a half-dozen, or more, pharmacists scurrying back and forth filling your doctor’s prescriptions from bins, bottles and jars of pre-mixed pills, capsules and elixirs manufactured by America’s leading pharmaceutical companies, all of which have it down to a (excuse the pun) science. Ideally, the connecting link between old and new remains as it did anciently: to cure, to help and to render relief for the suffering (but first do no harm) just as today’s medical people want to do likewise in making whatever ails us better, or at least manageable, including Alzheimer’s.
With many HMOs having their own pharmacy and other pharmacies being part of vast chain stores, the personal relationship between druggist and patient has nearly slipped into the past. No longer having that special connection, I doubt any professional would quip to a departing customer, “this’ll either cure ya, or kill ya.” However, due to a recent experience I had with Ken’s medication, I would update that old jibe and post the revised axiom under the word PHARMACY which would read, “This’ll either cure ya, or kill ya, or make you crazy.”
About 18 months ago I noticed Ken was developing a streak of agitation, touched with a bit of meanness and refusal to coöperate with me. I made an appointment with the neurologist and mentioned to him that I was already giving him two over-the-counter sleep aids (Tylenol PM to be exact) which was making bedtime one of the more pleasant occurences of the day. “That’s fine,” he commented. “For the agitation, let’s give him Seroquel, which should have a calming effect on him. Give Ken 1/2 of the pill in the morning and the other half in the evening so the medicine level is constant, and continue with the Tylenol PM at bedtime.”
For a long while the agitation all but disappeared. Recently, however, it returned coupled with anger beyond belief, and his refusal to go to bed. Suddenly he seemed energized by the evening medications instead of being calmed. He wandered the house rummaging through drawers, cabinets and closets moving household supplies and object (some to parts unknown) and wouldn’t settle down until somewhere between 3:00 and 5:00 in the morning, sleeping most of the day (all of this prompting my blog about nightmares).
After three days I called the neurologist and spoke with his social worker who keeps the patient’s histories. I told her that I had already stopped the Seroquel after reading on the internet that it wasn’t recommended for Alzheimer’s patients. She further advised me that long-term use of any over-the counter sleep-aid may eventually cause psychotic behavior.
That evening Ken and I sat on the couch watching TV. Never following anything too closely, even the Olympics, he was wonderfully relaxed. I had given him no medications. Much to my surprise, a little after 10:00 p.m., he said, “I think I’ll go to bed.” Still in his night wear after sleeping most of the day, I was surprised when, with just a little guidance, he went to bed and slept the night through. So did I — oh happy day. No — oh happy night.
My point here is to emphasize that we — everyone –should pay more attention to what the medical experts have told us for years: that we need to take more responsibility in managing our health care and that of our loved ones. Even though Seroquel helped for a while, I should have researched it more thoroughly at the beginning, and any o.t.c. sleep aids as well. (The information supplied on the latter product is not enough, and the print is much too tiny. However, it did state that if taken longer than two weeks, advice from a physician should be sought, which I did.) Had I been privy to the possible adverse effects early on, even though the suggested medications worked for a time, I would have been able to consult with the doctor in weaning Ken from both medications at the first sign of trouble and not suddenly stopping as I did.
I hold no animosity toward the neurologist in his prescribing a drug not recommended for Alzheimer’s. (We have an appointment next week.) In his practice I am certain that he has prescribed Seroquel to many other AD patients, and in some cases found it more successful — all the while keeping a study of the results because every patient is different – as he will probably do with Ken’s reaction. I’m all for doing studies, that’s how we learn, especially regarding such uncharted waters as the brain with its many dreadful diseases.
Furthermore, it is my opinion, and has been since Ken’s diagnosis, that the few FDA-approved medications presently on the market for AD treatment are little more than continuations of clinical trials. Unfortunately, I also realize that with so few ways of treating this terrible disease what’s out there is the best the medical community and pharmaceutical companies have to offer. As a caregiver I feel desperate to find something that will make a difference, perhaps research doctors feel the same frustration as they hunt for a cure, or at least a significant medical management for the disease.
Consequently, it is the same frustration which propels us — doctors and caregivers — to continue groping through the possibilities hoping to find help. Personally, I will try just about anything if it offers even a glimmer of hope in helping my husband. However, in the future I will be more involved, ask more questions and do more homework when giving Ken new medication. Meanwhile, remembering the ancient axiom I take consolation in doubting that whatever medication suggested will kill him, most likely it won’t cure him either, but I can do without psychotic.