Why does this happen?

Zaellan

My LO wakes up confused and agitated, the evening before she was fine (at least my definition).  As she goes through the day the confusion and hallucinations build up for a blowup (not exactly the word I want).  They get so bad she wants to be sent to a facility because if she can't deal with what is happening.  Tonight she threatened to hit someone. We are able to calm her down and by bedtime she is okay.  The morning comes and the whole thing starts over again.   She has Parkinsons with dementia.  She takes Parkinsons drugs, Rivinstatane patch in the evening and melatonin.  I know you all can't diagnose what is going on but does this sound familiar to any of you?  The blow ups are wearing on me..I don't know if I can stand another one. You shouldn't have to wonder what the next day will hold. Not like that anyway.

M1

SShe may need additional medication to control the delusions and agitation.. might improve quality of life for all of you. Would definitely ask her neurologist

Jo C.

I am so sorry for what is happening and can imagine the stress that both of you are experiencing.

Parkinson's Dementia, Lewy Bodies Dementia are very difficult dementias and it does take much detailed management along with the patient's dementia specialist to manage the symptoms that are causing such distress.  Parkinson's patients are very sensitive to medications; even those that are not related to Parkinson's Disease, so one must move cautiously and become a detective and monitor reactions to meds very closely.   If upsetting hallucinations are a significant issue, that needs to be taken up with the dementia specialist as part of the care plan management; that can be hellish for the patient.

Here are a couple of links re Parkinsons Dementia; the one from UC San Francisco has multiple very useful links that may be able to provide some good groundwork knowledge for you to get started on insight of what may be transpiring.

https://memory.ucsf.edu/dementia/parkinsons/parkinson-disease-dementia

UCSF has an excellent reputation for their dementia clinic; they are renowned for their work and patient management.

The Alz's Assn also has  a writing re Parkinson's Dementia:

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/parkinson-s-disease-dementia

There is a support organization dedicated to just this type of dementia, it is the Lewy Bodies Assn and can be reached at: https://www.lbda.org/

If you have a supportive dementia specialist, this may be the time to have an in depth consultation with him/her and make adjustments to develop a realistic and helpful plan of care.  It is also a good idea to have your wife checked for a "silent" urinary tract infection.   Many of our LOs develop this - the UTI is called "silent" as it has no physical symptoms of pain or burning, but there is often a highly negative change in behaviors until the UTI is treated.  Just an idea to rule such a possibility out.

Your wife asking for placement when in distress may well be caused by her own stress and feeling of being unsafe that she has and she is looking for safety and calm within herself.  This is something to find out a bit more about.

NOTE:  People with this diagnosis really need an environment with absolute structure and routine to their 24 hour days.   The environment should be cleared of all clutter and simplified.  The day to day function should also be very much on a routine with structure.   Noise and activity of others can also be triggers for negativity. Even TV programs or music that is loud or negative in content can cause difficulty.  It may be a good idea to closely watch to see if there are any triggers that set off the behaviors.

Is there a room, only for her use, that can be dedicated to a safe "quiet place" that your wife can retire to?   Perhaps one with light controlling window coverings, soft light lamps, a comfortable chair, a TV if she would like that; books, magazines, knitting if she has that hobby; someplace quiet and safe only for her that she can feel more peaceful in may be helpful.

NOTE:  The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia. They are very supportive, have much information and can often assist us with our problem solving.

Please let us know how you are doing; this is such a difficult situation to be in, and we understand.

J.

Zaellan

She is going to be tested for a uti today. I'm hoping that will help with getting some of this under control.