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By carman96 On 2014.07.06 22:06
I've written about this before, but it's so weird. About 4 pm my husband starting getting restless while watching tv. I asked him what he was looking for and he said he needs to get a ride to pick up his drum set from "the other house" I explained to him that we have lived here for almost 15 years and we have no other house. Luckily he didn't get too agitated about it but was confused for awhile. This is a variation on the theme that we are moving, going home, etc.
It's all okay until he gets mad about it and throws a tantrum.
Other times he surprises me with moments of lucidity. Anyone else ever have these moments with their PWP?

By parkinit On 2014.07.07 10:20
Yes! After my husband had a stroke in April, and I believe has had several TIAs afterwards, he has had many and stronger delusions than in the past:

1. Someone stole all our autos and we needed to go buy new ones. I took a pic of the autos as he is unable to go outside. He wanted to see the time stamps on the pics!

2. Where is my billfold? I lost my credit card. I showed him both of these. Satisfied.

3. I've been working for 12 hours and I'm really tired (he doesn't work . . . he can hardly MOVE any part of his body).

4. I have to finish that concrete job at the car dealership after lunch.

5. Where is ** (my daughter)? (She lives in KY; we live in OK.)

6. Daughter, son-in-law, and granddaughter are coming to visit (I used their names). His response, "Who are they?"

7. After coming home from the stroke, he still asks several times a week, "I want to go home." Or "Why am I in the hospital?"

I think it is more and more severe dementia. I just try to keep a very calm, quiet environment. Rowdy grandkids, loud voices and lots of people around seem to upset him greatly and cause symptoms to worsen. I take care of everything from finances to lawn work and he doesn't seem to realize or care (the apathy) that he is not "engaged" in life anymore.

For my spouse and the stage he is in right now (he's in hospice . . . end stage PD), I believe it is a disassociation with life to prepare him for afterlife.

It makes me sad for me that I'm "losing him," but it makes me even sadder for him, because he doesn't understand what is happening.

By HangingOn On 2014.07.07 13:50
Not sure if this falls in the same category, but my PWP sometimes starts a conversation in the middle of a thought and seems confused that I don't know what the first part was. Or stands behind the car, waiting for me to open the trunk, but he never asked. Not sure if he thinks he asked, but I don't dare ask because he will get upset.

By makrivah On 2014.07.07 19:43
HangingOn, ditto!

By carman96 On 2014.07.08 22:28
Parkinit, my husband is not end stage and is still somewhat ambulatory. But the whole dementia thing is hard, isn't it?
You inspire me with your loyalty and love for your husband, and the determination you have to make the end of his life the most comfortable you can. I know that's what's ahead for us someday, and I hope I have the strength and grace you have.

By parkinit On 2014.07.09 20:49
Carman -

Lots of prayer, lots of help, and lots of family visits (my 82 year old mom is a regular supporter and visitor - these are the things that keep me sane throughout this process. I do have someone (another female mentor) whom I walk and talk with once a week. She is a Godsend.

By Michele On 2014.07.14 23:21
I've seen some of these things with my PWP (parent with P right?) once he gets something like this on his mind he will be agitated,angry and or sad for a day or two. It's so hard because some of the things he believes are hurtful to people and they really didn't happen!

By carman96 On 2014.07.15 08:46
Parkinit, how wonderful that you still have your mother with you. My mom passed 18 years ago and I miss her everyday. Glad you have a mentor. What would we do without our female friends?
To all of you dealing with dementia, isn't it strange how they can't remember things that really happened, yet can fixate on things that are only happening in their mind? So sad.

By kkoschemann On 2014.10.01 15:54
Caring for my MIL with PD. Dementia and delusions are both issues. She lives at assited living facility - called 911 and told them intruders from AFLCIO entered her room after she discovered their plot to steal SS checks. She had fallen out of bed and struggled face down on the floor. Scraped face, knees, etc. as she clawed herself with fingernails while fighting off the intruder.

Of course they took her to emergency room - MRI, ran tests, nothing wrong. Just need to bring her down. Within 20 minutes of our arrival, she realized it must have been a dream.

This type of thing as happened three times over the year. Each time she is taken to the ER needlessly. Any recommendations?

Do your PWPD have delusional episodes?

By LOHENGR1N On 2014.10.01 20:04
kkoschemann, Hi and welcome to the forum. Without knowing much of what happens pre-episode or the medication She is on it is hard to say. But it sounds like it might be medicine related. Either a tweak in dosing or checking on the timing of the dosages might even be the culprit. Does She take her own medicine (meaning is she in charge of taking it herself?) She might have doubled up on a dose and not known it causing the distress? You'll probably have to play Sherlock Homes on this one. Many homes and living facilities all have their own protocol. Many aren't really up to date with P.D. even if they say they are so you'll have to tread carefully. Discuss the medicines with Her neurologist to get Their input.

I say they are not current because quite awhile ago we had a discussion here about how to break freezes and someone who worked in a living facility said they were instructed to just walk around any frozen P.D. patient they would move eventually. No, you break the freeze but it is so sad to think the protocol was to leave a poor patient unable to get moving without help just standing there like a coat rack and ignore them. But I digress make sure that if given the medication by staff they are giving it at the correct times this is so crucial. By that I mean if say sinemet is taken 4 times a day every four hours by the patient when they go into homes or hospitals the doctor has to write that otherwise they view it as 4 times a day every 6 hours and it mess us patients up. I don't know if any of this makes sense or helps right now I hope it does and again welcome to the forum. Take care, best of luck and hang in there

By bksquared On 2014.10.02 00:59
My husband with pd tells me what I have said or done which has never happened. He tells his behavior therapist I make things up. He will start conversations mid thought and when I don't get what he is discussing gets angry a n d screams at me. I feel like I am living with a terrorist. I walk around on eggshells wanting for the bomb and mortars to begin an assault. His timing is perfect. Any moment when I m feeling good, getting ready to go out, doing something for myself, or am looking forward to an event he strikes. What about me. What will I eat. How will I take my pills. You made me move my clothes, shoes, wallet, etc. Now I can't get ready. But everything is laid out in one spot, then he puts them so he can remember where they are. But of course can't recall where. Then his anxiety over time makes me crazy. Yes he is slower, but 3 hours is just not needed to dress and eat. If we need to leave by 8:15 he does not need to awaken at 5 am. I have him set his clock for 6:10 am. But because he is certain that is not enough time, he tosses and turns all night. Then gets out of bed 5:00 stating he couldn't sleep. We are dressed and feed 7, then he paces for the hour and half before departure time.

By Mary556 On 2014.10.02 05:39
Greetings, kkoschemann. To help you "play Sherlock" as Al suggested, by any chance was your PWP taking antibiotic when those few extreme episodes occurred? My Aunt (my Dad's sister who does not have PD) has episodes of extreme delusion /hallucination and/or paranoia when she has an infection and takes antibiotic. At other times she is pretty much lucid.
Last week my PWP had a rough time a few days after she started an antibiotic (generic Cipro). My Mom did not recognize family members and did not seem to know her own identity. She was in extreme emotional distress and it was upsetting to all of us. The pharmacy's instruction sheet about the antibiotic listed several CNS symptoms that my mother was experiencing and said to call a physician right away. Her doctor explained that there could be synergy between that drug and her antidepressant (or another med) or that antibiotic could enhance some symptoms of PD. Another antibiotic my mother has taken (Keflex /cephalexin) did not cause that reaction.
Your MIL's trigger could be entirely different, but maybe something along that line?
Peace be with you.

By carman96 On 2014.10.02 09:40
There is also the state where the person is awake but still dreaming and acting out their dreams. Can't remember the name of it.
Go over all medications. Maybe a interaction or maybe she actually needs something different to calm her down. Good luck. It must be very upsetting.

By carman96 On 2014.10.02 09:45
Bksquared it is not easy when our husbands get so agitated. Are you able to speak to his doctors and behavioral therapist? Make sure you tell them about these incidences.

By kkoschemann On 2014.10.02 11:59
Thanks all. So glad I found this forum - knowing that others are dealing with the same issues. Re: Sherlock - no antiobiotics during episodes, but during one we determined she had the beginnings of a UTI and I know those can greatly impact an 85 year old. Another happened the day after we took her on a day trip to Houston for a family party - perhaps taking her out of her daily routine triggered something? The facility administers her meds, but she is responsible for going to the nurses station - if she is an hour or so late, they'll track her down. I wonder how diligent they are with this? I'll ask more about their procedures and maybe add a couple of more random visits during the week.

On the brightside, my MIL and I laugh because these episodes always involve kidnapping, murder plots, and other scary things....she is always the hero who captures or fights off the villian and saves the day! She rescued the lost asian airliner from the serpent (facility nurse) in March. Somehow that makes her feel better and humor always helps.

Bless you all.

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