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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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In reply to BarbBrooklyn, you mentioned she wants to "go back to taking her "naturals"." Any chance you could pass off her remaining meds as the "naturals?" Keep an empty container of the "natural" stuff and let her watch you fill the dispenser with that?

If not, since she does seem to read the labels, could you write up something "from the doctor", which states again why she needs to keep taking the current meds? We often have to use notes and such for mom (hearing is really bad, even with the hearing aid.) When we needed to move mom, but she was refusing to move anywhere, YB wrote up a letter from "Elder Services" at the local hospital where she just had treatment for cellulitis. It told her she chooses to move where we pick or they will place her. She was sooo mad, but reluctantly went. Problem with doc telling her at the appointment is that she might not hear as well AND will forget after you get home (or before!) Just use similar kind of letterhead doc office might use. Done on PC, you can print up another copy if she "loses" it. By having it in print, she might read it now and again and perhaps retain some...
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A Doctor, Someone Now, Needs to Intervene. Mom should be somewhere where she get the Care She needs. Her Dementia will only grow worse...
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"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."

Sounds like she was included/clued in on the "weaning." That is unfortunate, as now she thinks she can wean off everything! Can you not allow her to see the bottles/paperwork and put them in some container to make her think they are just vitamins? Definitely consult with doc(s) regarding anything else that can be eliminated, such as cholesterol. Anything for the heart/stroke prevention you might want to keep on board.

Her "complaints" do sound mostly like hypochondria, paranoia from seeing/hearing those ads, imagination, etc. Any symptoms that are fluctuating and coming/going so often are not likely to be actual physical problems. Who does she relate these "issues" to? Can you all learn how to fluff her off, sure mom, will look into it, agree and then try to refocus her attention on something else? She might return to those "episodes" often, nothing you can do other than agree and redirect or tune it out...

While it would be hard to eliminate all access to TV/radio/magazine/newspaper ads, I would NOT let her look at the bottles with the medication in them. If she cannot see/read the labels, that eliminates that issue. If she "remembers" she takes that med, just fib and tell her she stopped taking those long ago!

Fill the dispensers at home and leave the bottles there. Out of sight....

"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."

Hmmm, sounds like she lives alone? Is this wise? Even if you went every day, how would you know she took the meds unless you actually WATCH her take them? If they are not in the container, could she hide/toss them? Is there anyone living with her who has oversight? Can you install cameras, to observe taking of medication (not the best solution, as they can take the meds off camera and ditch them!) Can you hire someone to go daily and provide a timed locked dispenser? Aides cannot handle or dispense, but if you set the timer for the middle of the time the aide would be there, they can direct the person to the meds. The primary reason we hired aides (1 hr min) was to ensure she took her meds. Sometimes she just wouldn't see/hear the alarm.

Several comments and your understanding of how eliminating some could have worse consequences was going to be the gist of my post. Mom "self-weaned" various meds, like cholesterol, a long time ago, but continued to take the BP meds she has taken for decades. They recently added a water pill back in (one of the ones she stopped taking.) We still get the injections for Mac Deg to preserve her eyesight as much as we can. Flu shot. Pneumonia shot.

Our mom was around your mother's age when it became apparent to me that she was in early stages of dementia. We tried various ways to keep her in her condo, but due to her own ignorance, she refused everything we tried/offered. Personally I would NOT want her to stop taking these BP meds - I would think the horrific results of a non-fatal heart attack or stroke would be worse than taking the damn meds! Even a fatal stroke or heart attack would be hard to witness! If she would not recover sufficiently from something like these, I would consider palliative care, no meds, but until then, keep the meds coming for her (I do not take any myself, not even the flu shot, thankfully!)

BTW, she turned 96 in August and has been in MC for almost 3 years now. She has occasionally tried to say she doesn't take meds or would ask the staff member what the pill was for, but they have their ways to coax people into compliance, usually. A little regression in short-term memory over the last 2 years, but in general stable medically, so no, I wouldn't eliminate those meds....
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Abby2018 Oct 2019
Oh my.....YES.....She was involved with the weaning process....Huge mistake!! Now I've created yet another problem for myself dealing with this. Truth be told I should have known....I throw away all prescriptions attachments with the disclaimers of all the possible side effects. God knows she would experience each and every one. She lives with dad who does try to stay on top of this....but she will play games with them. Won't take them on time because her stomach hurts, she hasn't had her coffee, etc. At times he will lose track but at night will check her dispenser to see that it's empty. For now we're just biding our time....she is very stubborn and insists on living at home.
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Hope today's visit went well, Abby!
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Abby2018 Oct 2019
Thanks Barb...... he is concerned about her ever increasing confusion, but wants to maintain a wait and see and made an appointment to see her in six months. Her test was about the same as last time.....he thought it might be better since she is off both the Tramadol and Zanax as well as being more well adjusted to the hearing aids. As it stands, he is not advising intervention at this time. He did address the medication issue with mom and explained the importance of taking them. He did not feel it reasonable to visit other specialists........unless a serious issue develops. Mom told him she feels great. When we left she told me that by the time she goes back in six months she wants to be off everything and just go back to taking her "naturals". I think he totally underestimated her stubbornness and the strong will to be in control.

She makes me crazy :(
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Tramadol is a very low dose for pain and it sounds like both of you would benefit from her getting back on Xanax. Why do people have such a hard time trying to regulate all types of medical imbalances with pills but, lay the guilt trip on some general pain relief and relax your nervous behavior (for those around you if not for the patient). Start back with lowest dose of both and go from there. Lots of meds are forced on elderly that are not necessary and do make them feel worse.
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I would see what geriactric specialist has to say. Sounds like mom is manipulative. This is common with dementia as well as hypochondria. Blood tests will reveal amount of antibodies in her system, or blood levels of drugs in her system. She may need to be in a setting where she can be monitored, such as Asst. Living. That way, she will have people around to socialize with, the staff can take her to med appts., and you can find some time beyond being a taxi driver for her. I have done it for nearly four years, but it cost me my job. I only have one mother, so when she is gone, then I can deal with my life again. The time is approaching for me to do that.
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Eliminating all meds is not a good idea. Try distracting her to another topic when she complains for problems. If the symptoms are "magically gone" on 20-30 minutes, it is a problem of a mental "do loop" - her brain keeps returning to the same thought pattern/subject. Distraction is your best way of coping with this so that this brain pathway lessens it's hold on her. f her symptoms do not go away after 20-30 minutes (she keeps complaining and does nonverbal cues of pain like holding her head, closing her eyes, crying, etc) then she is having a problem that needs to be addressed.
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Eliminating some meds may have only confused your mother.
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Eliminating all meds is not a good choice for everyone. My mother (who lives in an AL facility) is bipolar and takes serequel and depacote daily. A physician stoped these meds and the result was disastrous. The extreme manic state that this put her in took a toll on her and me, and it was difficult getting her back on the meds. Even at age 94 she needs them. She also takes a bowel softener, vitamin D, a baby aspirin, a diuretic and synthroid, She blames everything from dandruff to hiccups on the meds she takes but I know that if we eliminate even one of them, she’ll want to stop all of them and I’m not subjecting either one of us to that again.
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It would be helpful for you to look up each of her prescriptions before your appointment with the doctor so you can have an informed discussion with him.

You may may find that applying layman’s logic, some of her pills contradict each other. The doctor can then enlighten you.

Personally, I take lasix, a diuretic, and also take oxybutinin to control incontinence. They seem completely opposite to me but all my doctors assure me they work in different ways. Go figger, I still have edema and incontinence, lol.

Charlotte
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NeedHelpWithMom Oct 2019
There you go. Perfect example of ‘practicing’ medicine. Trial and error many times. Process of elimination or adding something to a regimen. Takes time.
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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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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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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 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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Perhaps you can place her must meds in vitamins bottles.
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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 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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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 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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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 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 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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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 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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Would you be in favor of eliminating medications for heart issues? What if it leads to a heart attack yet not a fatal one. How about stroke issues? If there is a need for a urologist a specialist needs to be seen. Incontinence issues can be helped there. An eye doctor could possibly help with a new prescription. Would you eliminate a dentist and not have teeth cleaned? If a medication for memory loss has started the stopping of it may make the situation go backwards. I understand not wanting to prolong a life that seemingly has no worth health wise but do you want someone in a vegetative state instead?
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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 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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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 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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