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Recent visit to the PCP and we decided it was time to wean off the Tramadol. Over two months ago she was weaned off Zanax. Prior to that it was prednisone, but she is now holding at just two milligrams per day. Now she is experiencing eye pain and having headaches (supposedly) and feels her other meds are causing this. She doesn't want to take prednisone any longer and wants to start eliminating other mandatory meds as well. She is arguing about her heart meds, high blood pressure meds and Cymbalta (which she is taking for both depression and as off label for pain). I explain to her that to stop taking these can be life threatening, but she insists she doesn't feel well because of them. This was never an issue before and I feel she has it in her head that she can stop all of them since we eliminated two. We see her geriatric specialist next week.


Question is....PCP thinks she should be seen by an ophthalmologist and neurologist....but is aware that this is probably nothing more than a ploy to stop taking her meds. He thought that might be an issue when he suggested weaning her off of Tramadol. She is already being seen by four specialist on a regular basis in addition to labs, tests, etc. and to add two more visits will be a burden since I have only two days a week in which to take her....and she can only do one appointment per day as fatigue becomes a problem. Do you think I would be amiss if I waited to talk to the geriatric specialist about this? I'm willing to bet the symptoms she's experiencing will be gone by then anyway. I certainly don't want to put mom in harm's way, but I think her dementia might be playing a role in her stubbornness. She has always been a hypochondriac. Has anyone else dealt with this and how does everyone else manage to be a taxi driver and advocate for a very elderly parent with dementia? I'm finding time management to become a serious problem.

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Dementia leads to a slow miserable decline. All the drugs do is keep us alive and miserable longer. I will probably get massacred here....but there is the thought that if she wants to ditch all the drugs, she probably should also ditch all the specialists. How old is she?

I have become of the opinion that there is some logic that after a certain age and condition, maybe it is best to let nature take it's course.

Can you transfer her care oversite to just one practitioner...the Geriatric Specialist? Going to multiple doctors is a full time job and frankly just a lot of bandaids here and there. I also think that these seniors become way overmedicated by multiple practitioners. One time I rushed my mother to the ER, had time to grab her meds and was shocked to discover she was on 14 different meds.

You can just discuss only comfort care strategies. If I had it to do all over with my very elderly father, I would have been in favor of quitting all med's (except maybe the Celexa which took the knife edges off a nasty disposition) and let nature and God take its natural path.

Please don't judge me,,,just my raw opinion.
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NYDaughterInLaw Oct 3, 2019
I agree with you, Mincemeat, about the meds and also that a good geriatrician can replace most if not all specialists.
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I was forced, in a way, to take my 91 at the time year old mother off blood thinners when she was getting THE most horrible bloody noses imaginable. Last ambulance trip to the ER I walked in and the doctor was PHOTOGRAPHING the clot she coughed up. He said he'd never seen such a huge clot in his 15 yrs of being a doctor. He was going to post the photo on the bulletin board at the hospital for all the staff to see. You can't make this sh@t up, right? The blood thinners were blamed for the nose bleeds and the need for cauterization several times in order to get the bleeding to stop. Blood thinners were prescribed for AFib and a DVT. She also has an IVF filter in her vena cava.

A few months after the blood thinners were stopped, she had a stroke. Not major, but substantial enough to get her out of Assisted Living and into Memory Care. Her dementia worsened as well, but maybe that would have happened anyway.

Should she have stayed on blood thinners and gone by ambulance back to the ER God knows how many times with more bloody noses in order to have avoided the stroke, we ask now, in hindsight? The answer is no.

Dementia is robbing my mother of her entire life. I and she have no desire to extend it for ANY reason. She told her friend today, who was complaining of boredom, to Get Used To It Because You Will Live Here Until You Die. Nothing like poking a hole in the bottom of the boat they're all in, huh?

If I had my druthers, I'd take mother off all of her meds except her happy pills which don't keep her very happy, obviously. She's lived a long life and keeps saying she's ready to die now, it's time. Why prolong the agony with drugs, specialists, chronic doctors appointments and all the rest of the 3 ring circus intended to extend life in very old age??? Everyone suffers, except the doctors offices cashing the checks.

Let them alone to take or not take the meds they choose to take. To eat the foods they like. To drink the beverages that make them happy or giddy or high. Let them smoke cigarettes if they already have cancer and are freaking out about quitting. In fact, buy them some pot laced chocolate if you live in a state where it's legal. (Eating pot laced chocolate is about the ONLY time I've seen my mother relaxed, laughing and happy in YEARS)

Dementia has ALREADY taken their lives. Let's not be guilty of taking away any more of it.

Just my 2 cents on the matter
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Abby2018 Oct 5, 2019
I never thought to look at it in that context. Mom will be 90 in a matter of months and her dementia has been on a steady decline over the past year. My fear IS a stroke......one she might live through with horrible consequences. Or a heart attack which might prove fatal, or not. And I have expressed my opinion more than once as to the very elderly being a cash grab.....because the medical profession at times seems to play on emotions rather than being pragmatic and allowing families to make the hard but ultimately the decisions which are truly best for their LO. Mom has not expressed the desire to die and she would see every specialist imaginable if she thought it would extend her life. She just doesn't get that the meds are helping her to accomplish that.

I thank you for your 2 cents.....and I will keep this in mind when future events could dictate otherwise. Who knows? That could be as soon as next week.
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I think it would be fine to wean her off the meds. The diseases that we have held at bay used to kill us before we had dementia. Now drugs keep us from having heart attacks and cancer, so we hold out for the slowest departure of all. If she stops her meds and has always been a hypochondriac, doesn't that mean she's cured? Let her!
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disgustedtoo Oct 8, 2019
I have read people's comments before about how we are "living too long" so this is why we have so many with dementia. Tell that to the families of those who are in their early 60s or even younger, especially those who have never had medical issues or taken medication!
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When my mom went into Independent Living and we ditched her PCP, her new geriatrics doc took mom off everything except her BP meds and he monitored those by having her take her bp twice a day and having her call if the numbers were out of whack.

Sent her to a geripsych to get her anxiety under control.

She continued to see her eye doctor and had drops for dry eyes. Other than that....nada.

When she had a stroke and went to the NH, what I harped on was treating her anxiety.
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I hope its not rude to ask: why can't she be weaned off all meds that she doesn't want? (I mean, if she's in her right mind, of course).
Just asking cuz its her right, & I think you just made a lot of work for yourself to fight it. How about also finding a van service that will take mom to all these new appts that you mentioned: (eye Dr, Neuro Dr...)
Reason: I found out the hard way, that mom just loved creating crap for me to do, (or 'look into', ect).
I was pissed finally, spending 4 yrs doing all her bidding was enuff. (I actually took various coffee pots back 5times for her), & on & on...dumbass that I was. Please google: 'grey rock' so you can learn how to stop responding to these controlling & endless cycle of 'requests'. No offense intended,...just don't want u to go thru what I did. Good luck.
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Oh dear, the prescription lists as long as War and Peace...

The trouble is, you can't prove she's wrong. When there's such a complicated cocktail of medications on top of a complicated set of co-morbidities, how on earth can you winkle out cause and effect and side-effect among that lot?

I would say though that in principle it is for her PCP (or whoever is in overall charge/chief co-ordinator, and geriatric specialists are terribly good at this in my experience) to justify each prescription item and demonstrate that it is at least probably beneficial if not absolutely essential.

And then on top of all that lot *again* you've got her recent withdrawal from two big hitters when it comes to both mood and sense of physical wellbeing. Who was supervising the weaning process? Were you happy with the plan?

If you happen to have an up-to-date pharmacologist handy that would be ideal! Failing that, go for the person who is the most conscientious at examining interactions and rationalising prescriptions; and get her PCP to concentrate on explaining which ones she really can't afford to stop.
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Abby2018 Oct 5, 2019
The weaning process went well.....and she was very compliant knowing full well these would be eliminated. Problem is she feels all others are unnecessary and over the past two days have complained of stomachaches , earaches, headaches, stiff neck, etc., but psychically has not been compromised. Dad said she jumps from one ailment to the other and complains that her meds are causing this. Before we began the weaning process taking her meds was never an issue. Hopefully the geriatric specialist on Tuesday can convince her that the remaining meds are necessary to keep her alive and relatively pain free. Fingers crossed.
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Eliminating a dentist is hardly something that any reasonable person would suggest.

It's the "maintenance drugs" that are overprescribed and often over-dosed.
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Riverdale Oct 3, 2019
I just know that my mother would likely be greatly impaired if she went off much of her medication. I don't enjoy observing the slow decline but I would prefer that to see her in a catatonic state in a bed or wheelchair. She has already had at least one major stroke which fortunately has not affected her speech nor caused paralysis but certainly has changed who she was.
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All kinds of things come into play here regarding meds. People can be hypochondriacs. They can be delusional.

Symptoms should always be thoroughly discussed with professionals, and as many have suggested on this site assessments should always be considered or any other tests such as UTI, etc. that would give insight and lead the way for proper treatment.

Necessary meds are important and some meds should never be stopped suddenly. Unnecessary meds can and should be deleted if no longer needed.

First and foremost problems should only be discussed with a professional and not necessarily relatives, neighbors or friends because everyone reacts differently to medication. The only exception to relatives is if it is concerning a genetic situation.

Sometimes the power of persuasion is powerful with the elderly. Geeeeez, even television commercials influence them.

That being said, how many times have we heard someone say that they feel like they feel like they are being experimented on. I can empathize with them.

We ‘practice’ medicine. It isn’t an exact science. Going to the best medical facilities that we can find and trust is all we can do, follow the advice and if needed make changes or modify treatment as needed.

At least people feel they have a choice in the matter now. I remember when people did not ever question doctors.

They were not active in being responsible for their own care. The doctor’s word was treated as ‘law’ that must be followed. Nowadays doctors are used to be questioned. I like what my dear late grandpa used to say, “Doctors bury their mistakes.”
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Abby2018 Oct 5, 2019
Thanks for the reply......and yes, TV commercials are the worse. Especially when they go through the laundry list of side effects......which is everything from a hangnail to an untimely death. And mom doesn't retain much.....but those commercials become etched in her mind.
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Is she still competent enough to decide her fate? If so, I guess you don't have much choice. Personally, I see nothing wrong with getting off meds. They can cause their own problems, but also help with others.

Is she willing to take the risk that these meds actually ARE helping her and going off them could cause issues, even death? Heart attack? Stroke? Is she ready for that? Might not happen of course. Who knows?

I just got my mom off one med and am looking to reduce another. She says she wants to stop them all but usually she's just spouting off in a bad mood when she says that. I just let it pass and move on. She's a lot younger than your mom (76).
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Abby2018 Oct 5, 2019
The goal is to wean her off the unnecessary meds.....but in her confused mind she thinks if one can be eliminated they all can. If one is "bad" for her than the rest must be. She is now obsessed and reads all the labels and freaks out at the varying milligram strengths. Every time I'm there we have the same conversation.....milligrams vary from med to med and because one is 50 and the other 10 is of no consequence. I fill up her med container once a week and she appears to take them.....Other than to go over every day and watch her do so (not possible), there is not much else I can do. Sigh.
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Anyway to distract mom from that? Blood pressure, cholestrol, and whatever else controls the body functions may be considered cautionary necessary measures. Strokes are not good, bloody things are no good, blod clots, not being able to stop a bleed is not good.. These bodies go through enough...

To bleed or not to bleed and clog the arteries... My BP is going up already and I am not on that stuff yet...Soon though.
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