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Hi all,
Been a while since I have posted. I am a full time caregiver for my 96 year old mother who has dementia. Starting about 4 weeks ago, she started to hallucinate, seeing people who aren't here, packing her small pocketbook and telling me her mother is coming to pick her up, etc.
I took her to the ER to have her checked for a UTI because she cannot urinate on demand but has to have a catheter hooked up. The doctor said her tests came back negative but gave me a prescription for antibiotics anyway in case her culture came back positive. In any case the antibiotics didn't make any difference.
I noticed a pattern that when she doesn't sleep well that is when she gets delirious. This is brand new to me and it's difficult for me to distract her.
I don't know if there is any scientific explanation for any of this.
When she does sleep (she was sleeping a lot before) then she is fine and acts like herself.
This morning she was calling out for help for a little boy that she said she was taking care of and was sleeping in her bed. I pretended to feed the boy breakfast and then I pretended to lift him out of her bed and put him on the couch to sleep. That made her happy.
Because she was so shook up I gave her 1 mg. of klonopin when she normally takes .5 every night to help her sleep.
My mother has taken benzo's most of her life and has always been addicted to them. Since I'm taking care of her she gets less klonopin than she did prior. Well the medicine put her to sleep and she is peaceful right now. Judging by her past behavior she could sleep until 2:00 this afternoon.
Her doctor is not in today and I don't consider this an emergency. Should I call anyway even though it's Saturday?
I'm also wondering if this means her end of life is coming sooner. I really don't know what to think right now except that I'm going to need help.
Thanks,
Jenna

Jenna, you probably know this, be sure and wait 2 hours either side of antibiotics and probiotics or they just cancel each other out.

I pray that your mom recovers quickly and these delusions are not part of her new normal.

I just want to tell you, you are totally awesome and your mom is very blessed to have you. You are doing such a great job taking care of her, I am happy you are going to get some help for you to get a break, because you matter.
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I called an ambulance for mom since she is having severe hallucinations again. She believes there is a little boy in her bed and she keeps talking to him.

Her doctor said to call if she started having delusions again so I did. She also fell down last night. Darn, I'm tired!!

The medics told me her blood pressure was very high (it was normal earlier) and her a-fib was high as well.

I'll be leaving soon to go to the ER since I may have to sign papers since I have POA. I really dislike driving in the dark since I don't see well at night but at least I know the roads (it's about 5 miles away).

I'm thinking (from my non-medical research) that my mom may have Lewy Body Dementia but I'm not a doctor.

That's it for now,
A tired Jenna
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Isthisrealyreal Oct 4, 2022
Prayers for you both Jenna.

Be safe!
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Jenna
It sounds like you handled the problem perfectly. If mom was satisfied. I don’t think I would give her the drug until perhaps night time to keep from disturbing her sleep cycle. You have done well to recognize that she has the delusions when she doesn’t sleep well.
You are having trouble distracting her because she sees what she sees or in some cases, hears what she hears. As long as they don’t upset her I wouldn’t worry about it. If you go along with her and act normally, she will most likely not be upset. If you are upset when she mentions it, then she will take her cue from you that she should be upset.

On the hospice, you can call a hospice company directly and ask for an evaluation. Or call the doctors office next week for a referral.

I would keep a log of her episodes so that you can tell if they are stressful to her, action taken, what helped, what seemed to bring it on and how often she has them.
Keeping logs of new behavior is always helpful to me as I will have answers to questions the doctors might ask.
I also logged vitals for Blood pressure, temp, O2/pulse. These are just things I did to be able to answer the doctors questions and satisfy myself that all is well. I think it helped my LOs as well to know they were doing fine or to distract them. “Oh your BP is a little high. Let’s take some deep breaths”. Or, good no fever and your pulse is nice and steady. You O2 is better than mine…just little comments to distress the situation whatever it is. You might try that before giving a pill to help move the moment along.
It sounds like you take great care of your mom.
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JennaRose Sep 25, 2022
Thanks for your kind words. Lately my mother doesn't have a "regular" sleep cycle. Even though she slept most of the day yesterday she still sleep most of the night and is still sleeping.

I try not to get upset because I always sensed that she would pick up vibes from me so I try to act positive and "try" to turn a negative into a positive.

Thanks for reminding me of keeping a log. I used to keep a log but stopped since it was the same words and numbers. I will start again since she is exhibiting new symptoms.

I did put a call into the doctor's office yesterday (Saturday) but didn't hear back. I will call again tomorrow (Monday) as I know my doctor who works with the elderly will arrange for an evaluation for hospice.

I simply wasn't prepared for delusions but now I'm getting used to them and keeping sugar out of her diet in the afternoon toward night time. She doesn't have any caffeine which is good. She's still eating great so that's not a problem and her BP is perfect.
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The last thing you need to worry about at this stage of the game is upping her dose of Klonipin. I have been on that for 20 years and am beginning the 'taper down' process. It's awful. B/C it was the ONE medicine that worked every single time I took it. If it helps with a 1 mg dose, let her dr know and hopefully you can keep that up.

She does need an evaluation since this is 'new' behavior and maybe the dr has a better choice for a sleep aid/calming agent. Hallucinations are as real as real to the person having them. I'm sure her dr has had this in patients before and will be able to help.
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JennaRose Sep 25, 2022
Thanks! My mother has tried other meds and it seems Klonopin is the one that works good for her. And yes, she does need an evaluation.
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What activity does your Mom do during the day? My 100-yr old Aunt, with advanced dementia does 30 to 60 minutes on a portable pedaler while she watches a tv show. She gets walked around the house (not far, since she cannot do it without assistance), and walks to her mailbox outside and back. She folds a stack of kitchen towels and reads a book aloud to us. Ninety-five percent of the time she sleeps through the night without any sleep aids. Recently she woke up in the wee hours hallucinating that there were "small people" in her bed and she was furiously trying to kick them out. We just had to give her assurances and wait for her to calm down and go back to sleep.
We have no idea why that happened. It will probably happen in the future, but we still won't know why. She is on 1 medication for mood, for RA, and for thyroid. Sometimes we think she had to have a BM and this was how she was "processing" the urge... again, no way to know for sure.

Does you Mom get enough fluids every day? If not, she could be dehydrated, which may explain the hallucinations/delirium. Dementia is different for everyone. And hard. I hope you can get a solution for your Mom's sleep issues.
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JennaRose Sep 25, 2022
I had tried to get my mom involved in activities outside of the house. About 2 months ago I took her to a senior center that had Bingo and it was a job just to get her out of the house into my car. There are 2 easy steps so I had her practice with her old walker (not the rollator) and I put a gait belt around her to keep her safe. Long story short she couldn't see the numbers on the Bingo boards because of her MD. We went again but I decided it was too much for me. I helped her played her boards because she couldn't see the numbers that good.

We do play cards when she doesn't have a bad headache and now I say the card numbers out loud because she is having difficulty seeing them.

My mother is obsessed with going to the bathroom so she gets plenty of exercise every day just going from her room to the bathroom, lol!

She does need to up her fluid intake daily so if I give a her salty snack she will drink water. I don't know how else to make her drink liquids (she likes apple juice with her meals). Interesting about the connection with dehydration and delusions. I have to think about how I can make her drink more liquids.
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My grandma saw children in her room and under the bed before she died. But she didn't have dementia.
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Oh Jenna, I am so sorry that you and your mom are going through this.

If rest help keeps her on an even keel I would do everything safely possible to ensure she is getting sleep.

Prayers for both of you at this difficult time. I think a hospice consult is a good step to take.
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JennaRose Sep 25, 2022
Thanks! I'll post an update after I talk to the doctors.
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hugs.. I know the hallucinations are causing much distress. You could try calling dr on call, for suggestions. Ultimately she will need to be seen to get medication. My mom was put on meds , seemed to help initially.. but had break through a few weeks later.. we only upped medication when my moms hallucinations became disturbing to her. Medication never took it completely away. Redirect her if you can.

i would consider having your mom assessed for hospice. The end may not be near, but if she qualifies, the benefits are worth the exploration. My mom had been having mild hallucinations for a year or so, after moving her near me , they got considerably worse.
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JennaRose Sep 24, 2022
Thanks! She has a doctor who she sees on zoom. When I try to redirect her it doesn't last very long or it doesn't work at all. It depends how severe her delusions are.

I know my doctor who is in the same medical building as my mother's doctor understands what my mother is going through as well as myself better then my mother's doctor.

I will ask them about my mother being assessed for hospice. I don't want to put her in the hospital or nursing home because that would upset her even more. She's used to her own bed and home.

Thanks again!
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