Paranoia and delusions: Is it the meds or the mind?

It’s hard to believe that medications don’t make a person more insane sometimes.  If you can remember back to your oldest relatives who died natural and probably quite painful deaths, did it seem more common that they basically retained their personalities and their sense of basic reality, even if and when their memory and awareness was dwindling?  That was my perception and experience.

My mother’s mom, Grandma Massey, was the first relative I witnessed dying on lots of drugs.  She was uncharacteristically mean and delusional.  I was eight and she told me she loathed me and would have spat on me if she had more energy.  She wasn’t anyone I recognized. 

This is pretty much what I’m going through with my mother right now.  She’s definitely entered a new stage.  I was fortunate to have a chunk of fun, sweet time with her, when she was basically intact and could hold up a meaningful conversation, at least for a few minutes. 

 Her Parkinson’s drugs were increased recently to help her walk and decrease the sense of terror people with this disease feel when the dopamine level has dropped down to near empty in the brain.  It worked a miracle for her walking and her crying spells, but now she is barely mentally functional, living in a world of awful delusions and conspiracies, which lend themselves to a new kind of relentless fear for her.  The other piece of this story is that when the Parkinson’s meds have to increase, other meds often do too, to address side effects.  Then those secondary “helper” meds cause their own side effects.  It’s a crazy balancing act, and though it sometimes works, it’s total hell when it doesn’t.  This can also be the case with treating Lewy Body dementia, which is likely another part of my mom’s mental health challenges. 

Tonight my mother called me four times to tell me there was a dead body on her floor.  She could never locate it when the staff came in or when I was on the phone with her and was trying to talk her through it, but each time she hung up it returned.  So this evening she went to bed believing she was sleeping next to a rotting human.

We obviously will be heading back to the doctor.  I know that these issues aren’t all the fault of medications, as I’d like to think sometimes.  Parkinson’s and dementia progressively tear a person and her world all apart, and there’s no way to avoid that reality.  I just wonder if adding on the medication side-effects is making life much more miserable than it needs to be.

Mom keeps saying she’s done with the drugs, and has refused them a few times recently.  Although that makes her much worse in the short-term, it’s tempting to think that long-term, she does have that right, and maybe she DOES know what’s best for her on some level.  Maybe she’s pulling away from life, and perhaps that can be done more gently and lucidly off meds, even if it means she won’t be able to walk.

I have no idea what to do in that realm, but on a whole other topic, there’s been one thing this week that we can basically agree on:  She’s decided that institutional dinners are overrated and that she would prefer just to eat ice cream from now on……

This entry was posted in caregiver stress, support, and respite, dementia, doctors and medical, holistic health, lewy body dementia and tagged , , , , . Bookmark the permalink.

8 Responses to Paranoia and delusions: Is it the meds or the mind?

  1. Lesley says:

    Oh Meg, justing sitting here before bed reading your words and feeling so much for you and your mother. I don’t have much experience with drugs and my mom’s dementia, except to say that the days she was on heavy pain meds after her fall were the worst we have had together. I will be very cautious about the use of them if we face that in the future, tho’ I know my mom has no opinion about it. I am always struck by the insight your mother still has…perhaps it is something to listen to? I hope you all can sort it out. In the meantime, as you and your mom know, there is nothing like ice cream….such a shame it is the “worst food in the world”, or so I was told at a seminar many years ago given by a local health food shop. : )

    • Meg says:

      Thanks Lesley,

      Nice to hear from you.

      Believe it or not, I was just at a wild foods dinner where they served organic, lightly honey-sweetened nettle ice cream for dessert. It was both delicious and healthy. We women have to get our calcium one way or another, right?

      Maybe this will inspire me to start making ice cream again. I find the store stuff way too sweet.

      Take care,

  2. momsbrain says:

    Well, this sounds just awful. I’m sorry you’re going through it. This is why I feel that I have been lucky, despite the bad luck of Alzheimer’s, in that my mom responded fairly well to drugs when she was on them, and has responded even better to the withdrawal of most drugs. She still takes Zoloft – an attempt to take that away led her to pace and be anxious. I know so little about all this, but the doctor who runs my support group often talks about how medications’ side effects sometimes are worse than the condition being treated. I think your theory about her wanting to navigate without meds, even if it means she’d be in a wheelchair, is an interesting thought. I know it is so hard to know what the right thing to do is…

  3. Meg says:

    Thanks Emily!

  4. karen says:

    I’m with your mom Ice Cream is good. I have to make sure mom is not so doped up she does not eat and just sleeps all day. She is on Hospice and they want her no pain and drugged up all the time . I agree with the no pain but if she sleeps all day she never eats. I have to keep asking them to help me with this. Her pain is from Artritis. And I believe that we can find something to help without putting her out. She is not on Alzheimer’s drugs anymore just drugs for pain and drugs to make her nice. We do need those. Good luck and Thanking of you both.

    • Meg says:

      Hi Karen,

      It’s sure a hard balance. Pain and eating and moods, all the drug questions, and how to make life as good as possible when a person’s only partially alive. Sounds like you’re doing a good job walking the tightrope.

      Hang in there and take care!

  5. Alyse says:

    My stepmom is so delusional….she thinks my 85 year old father is cheating on her with a younger woman with 4 – 6 children and they are laying in her bed….heartbreaking to watch her go through this….in the nursing home…is this what everyone is going through with PD?

    • Megan says:

      It’s what some people go through with PD unmedicated, and what other people experience as a side-effect of PD medications. Hard to win, but imperative to find a good neurologist and psychiatrist who’ll work together and listen to you too.

      Good luck.

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