Haloperidol(1)

Jmeidinger

I am NOT questioning or criticizing my mom's physicians.  I'll throw this waiver out here to begin with.  Diagnosing people you only see once in awhile with alzheimers is a difficult thing. And then trying to help a patient is a trial and error process because everyone is different and it can be difficult to determine what stage or type of dementia a person has.  Especially when said person cannot tell you what the problem is.  I sympathize with the medical community on the challenges involved.

But on the other hand ... most of my mom's health problems in the past year have had that "trial and error" process as the original cause. (with an acceleration of cognitive decline as a contributing factor)

Examples...and I apologize for the long backstory but I want informed advice from others who have experienced similar situations.

 For the past few years, her Dr was concerned she was eating protein based diets and told her to eat at least 100 carbs a day.  My mom responded to this by eating nothing but ice cream and bags of chips and french onion dip.  Seriously.  For months at a time.  "It's the only way I can get to 100 carbs."  It made no sense but ... reasoning with someone with alzheimers isn't productive. 

When she started having the obvious blood sugar spikes the doctor responded by putting her on several appetite suppressing diabetes drugs.  (Such as Ozempic.)  Then when she lost 25 lbs in a month, my sister showed the dr a picture of her fridge filled with diet mtn dew.  My mom was told to stop drinking diet Mtn dew and my sister started regulating her purchases and keeping it out of the house.  The dr actually diagnosed the diet Mtn dew as the cause of the dementia.  (It was a few months later before I pushed her dr to test for alzheimers.) 

A month later my mom was in the ER requiring dialysis due to kidney damage and high creatinine levels because she stopped drinking anything at all.  Since she refused dialysis she was put in hospice care and told she can drink whatever she wants and taken off the last of the appetite suppressing drugs.   The dr's told me if she's refusing dialysis she doesn't have much time left.   That was the first week of January.

And with the removal of appetite suppressing drugs and the ban on diet mtn dew.... she has recovered to the point where she'll be graduating hospice soon. 

This has been the story of my mom's medical care for the past year.  I've watched from a distance for years as no one wanted me involved due to my insistence that her problem was alzheiemers. (long, complicated and ugly story)  I only got involved 4 months ago as her live in caretaker as she was spiraling out of control and the family members who opposed me were now asking for my help.

Now everyone bothering to read is caught up   And I thank you for it.

A month ago she was highly agitated and angry every day.  EVERY day.  I questioned whether she might have a UTI.  Her dr said she would not aggressively treat it because it was "related to her kidney disease."  (seems cruel to me...but... thus spake the experts.)

The hospice dr put her on lorazepam.  Didn't help.  Seemed to make everything worse.  So they replaced with haloperidol after a week where I very nearly had to put her in a nursing home and walk away from trying to let her stay at home with her dog. Those two weeks were relentless and I started burning out rapidly.

Then my wife found her problem.  She had a heat rash in her groin that was nearly so severe it was bleeding.  For obvious reasons as her son, I was not checking her groin with regularity (but am now.  I'm learning once you cross a line in alzheimers it just becomes the new norm and this is life now.)   

We treated the rash and the behaviors subsided IMMENSELY.

However the dr has kept her on haloperidol and resisted my suggestions that it may not be necessary.  Two 0.5 mg pills, one in morning one in evening.  With additional half pill doses every 6 hours "as needed" when she won't sleep or is highly agitated.  Only did this one day to try to get her to sleep after a 2 day bender and it didn't even work anyway.

So I'm not sure it's doing much besides making her foggy and confused.  Her desire to leave and "go home" to her birth city is still there.  Just ... subdued with less anger since the rash isn't bothering her.  I handled it for 2 months with redirection and car rides before the drugs...and I'm fine doing it again.

Everything I read on haloperidol says it is NOT recommended for alzheimers patients and can in fact increase cognitive decline and psychosis.  

So from those who have been there...

 Do I just accept the dr's instructions?  Or challenge it and fight to get her weaned off Haloperidol?

jfkoc

Good for you for questioning! Not all Drs are experts. 

Is the Dr her PCP or a neurologist with special interest in dementia's?

Was her diagnosis made by following proper current protocol?

I suggest you look up both of the mentioned drugs. I use drugs.com. Ativan is known to have a frequent  paradoxical effect and the Haldol is a really big NO for Parkinson's and LBD.

Neither of these drugs are "go to first" drugs. My pharmacist taught me this before she would refill a prescription for my husband and from one of my husband's hospital stays.

Your mother is fortunate that you are staying on top of things.

CareBear81

My mom's hospice doctor put her on Haldol liquid for agitation after she became violent one day and Lorazepam as needed. So far we have had no problems being aggressive. It literally happened one day and poof! the next day it was over and hasn't come back. Personally, I question EVERYTHING the nurses or doctors decide on and I want an explanation. I was a pharmacy technician for 13 years so yes, there are drugs that are not meant for the elderly. That is your right to ask any question for the sake of your mom's well-being.

Jane Smith

Haldol has no effect on my mother!  None!  Even at a very high dose. Everyone responds to drugs differently. 

We are lucky that my mom’s dementia medication is managed and prescribed by a neurologist whose practice is limited to dementia, and has years of experience. Otherwise I would have sought out a geriatric psychiatrist who specializes in dementia care. 

It did take time to get the right medications and the right doses to manage my mother’s dementia issues, which were mainly anxiety or anxiety related  (soul crushing, crippling anxiety).  Environmental changes also helped immensely. 

Over the years she has needed to have her medications reviewed and changed/tweaked, many times, especially when she went through periods of paranoid delusions (mostly poisoning).   The neurologist was a game changer for her. 

I hope you can find something that helps. 

Sjodry

No, trust your gut. I won’t get into the very long story of the first hospice we dealt with. The director of that organization was a firm believer in Haliperidol. I did not realize that the Haliperidol was exacerbating my mom’s behaviors & just thought the dementia was progressing. We were having frequent visits to the ER with highly agitated behaviors. Every time I called the hospice nurse to report the escalating behaviors, she consulted the hospice director who would keep increasing the Haliperidol. During the time of these frequent ER visits, I spoke to 2 or 3 different psychiatrists who all told me that Haliperidol is not used much for Alzheimer’s patients. I ended the hospice services and got her off the Haliperidol and she is back to her easier, managed self. I recently established a psychiatrist at a university/teaching hospital who is well versed in dementia/Alzheimers meds. Btw, the Ativan/Lorazepam had the same effect on my mom also.

Good luck..it’s a journey!

Sandy