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Really just sharing to get this out of my head. Mom's been home from rehab for a couple of weeks now. Like in rehab, she's still having hallucinations and delusions off and on throughout the day. It's unclear if this is from her ischemic stroke in August. Her neuro, who diagnosed her with med-induced parksinsonism a couple of years ago, suggested she's experiencing "psuedodementia." She doesn't have any memory issues. In fact, she seems to remember too much. During her hallucinations she tends to rail against people (family and acquaintances) who hurt her in the past. She says these people are in our home as spirits (even living people) that she sees and hears and, as a religious person, often tries to pray them away. These spirits are never up to any good. It's been quite an experience witnessing these episodes. Otherwise she's calm and engaged with TV, reading or other activities most of the day.


Her psych recently tweaked her mood meds a bit, but we'll have to see if/how that might help. And, understandably, no one wants to prescribe antipsychotics due to a near-fatal reaction she had last year to one (though she had been on some form of antipsychotic med most of her life, as she has a bipolar diagnosis).


There are other minor matters that we've been able to manage, thankfully. Besides the annoyance and stress these episodes can cause, it's tough watching her get worked up like this. And, of course, we try to engage with her as normal, validate her feelings and redirect her (which sometimes works).


I'm hoping this is an unfortunate period she's going through due to the stroke, but only time will tell.

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I am sorry you have this situation.

I hope things improve soon. Maybe medication side effects?

Just note though that dementia is not just memory issues. It is a widely held yet incorrect view.

Dementia can be changes in the brain that show up in many ways, sometimes quite subtle ways. (Close family will notice these changes way before any professional will).

Examples I've seen or heard:
Spatial. From unable to park a car to no longer being able to fit leftovers into the right size container.
Emotional. Dramatic mood swings (emotional lability) or inabillity to calm down
Listening/Understanding. Can appear as hearing difficulties, but hearing can be ok - processing is the issue.
Confusion. Especially late afternoon aka sundowning
Delusions/hallucinations. Seeing small children or pets is common in LBD. Spirits, ghosts or other shadows too. Maybe the brain is trying to make sense of sensory changes?

Depending where the stroke happened can impact what is effected. My Mother lost much vision after a stroke as it was in the visual processing area.

Parkinson's Disease has a big link to dementia BUT this does NOT mean alwithth a dx of PD will get dementia. Symtoms vary a lot, from stiffness, loss of balance, sleep disturbances & nightmares to weak speech & more.

I am NOT saying your Mom now has dementia. It could even be the mix of meds..
But keep vigilent for the sake of her safety.

You are right that time will tell.
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NeedHelpWithMom Nov 2023
Wonderful explanation of how a person’s behavior changes.
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I’m so sorry that you are experiencing these challenging situations with your mother.

I hope that the tweaking of her meds helps her.

Wishing you and your mom all the best.
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NancyNJ Nov 16, 2023
Thanks for your well wishes.
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Beatty, This is excellent.

so far i dont have any problems … or at least none that are debilitating … but i have a problem with sight that im sure is processing … eye doc says eyes are fine … and i think that visits to doc probably present me as competent … at least i hope so and i make some sense … getting out of the house and seeing someone new does that.

people tend to think dementia … it took me a long time to even say that word since i think of a wild-haired person running down a facility hallway and screaming loudly … is memory only and not realize the sublties … which i cant spell :(
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Since she has a psych history, I would tend to believe that her psych meds need to be adjusted. Please let her psychiatrist know about her hallucinations. As you probably are already aware, it takes time to find the right combination of medications to manage mental health issues.
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The transition, on going changes , demands, needs and expectations with a very ill person is a labor of love while also contributing to
" caregiver exhaustion" .

I hope you have on going in home health care services with her. If not , please consider some asap to provide assistance with her ADLS and support with you. And, she may even meet hospice guidelines for her diagnosis and, you could then consider admitting her to hospice care services in home. This can be a big help to her and family from many directions and I suggest that you speak with a hospice of your choice for more information. Remember that hospice is about quality of life for patient and family , not about dying.

Find some way to bring balance into the equation of caregiving and self care so that you can make thru the journey.
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GreystoneBill Nov 21, 2023
Hello:

I am dealing with and have been for 7 years with my wife and dementia/stroke issues. I now have a live-in 24/7 CAN. But I did try hospice once with Guardian Angels and my beloved would be dead, but for sending her to ER.

Hospice provides no life elongating assistance, but is limited to comfort, not life-saving (UTI was that immediate issue).
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NancyNJ: Prayers sent.
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Update: The adjustment to her psych meds seems to have made a positive difference. She still experiences one or two persistent hallucinations but they may just need more time to fade? Anyway, thank you all for your wisdom and advice, and for sharing your own experiences.
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