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texasrdr22 Asked April 2020

Is this just a part of dementia?

At 2 am, through the baby monitor in my room, I heard my Mom whistling and knew she was awake. I waited several minutes thinking she would soon wear out and fall asleep. Nope.


I walked into her bedroom to find her in bed, with blankets pulled up over her chest and wide awake. At first I thought she was doing arm exercises. Her arms were reaching upwards and she was making motions like she was climbing a rope. Then, her arms would sway outwards and she would appear as if she were trying to pluck things from the air and pull them towards her. It was a bizarre sight! It looked sort of like tai-chi performed while laying down.


When I asked her what she was doing, she told me she was "trying to get all this white string pulled down." She was continuing to wave her arms around, sort of like one does when trying to wipe away a spider's web you have accidentally walked through. Mom has aphasia and can barely put together a sentence, but her communication to me during this event was crystal clear! She could not believe that I could not see whatever this thing was that had her so actively trying to remove it. I asked her to show me where this "string" was and she pointed out into the room in the area around the bed. I even went to get a flashlight and asked her to point the light at whatever it was that was bothering her. She would not do that. I asked her to put a piece of the "string" into my hand so I could feel it and see where it was coming from. She tried to do this but, of course, there was nothing there, even though she carefully pinched her thumb and index fingers together so as not to drop whatever it was as she handed it to me.


She then thanked me for showing her there was no string (even though I still think she truly believes what she saw was there) and told me to "go back to bed and get warm like I am." And, every word was crystal clear and the sentence was complete!! We actually had a sort of discussion, which has not happened in a really long time. This blows my mind.


She has started this not sleeping behavior over the last several weeks. The time before the "string incident", she said she could not sleep because of "all the people in her room pounding on books." Then she said the people who live behind her were making a lot of noise, too. Her house backs up to a golf course, so there are no people "behind her". Even if that were true, she would not be able to hear the noise without her hearing aids. When she does sleep, she yells, talks, moans and is very noisy.


She likes to sleep late every day (noon or later) which totally messes up her medication and meal schedule for the day. This also makes it more difficult for her to sleep at night because she has not been up that many hours during the day. She also falls asleep during the day while watching TV.


Realistically, I know that I should get her up at a reasonable time and then get to bed at a reasonable time, too. Getting her on a schedule would be ideal, but when I walk into her room and she is sleeping so soundly, I hate to wake her up. I know...I need to get over it.


It is not going to get any easier.

lealonnie1 Apr 2020
Here is a link to a thread on this very topic here at Aging Care:

https://www.agingcare.com/questions/husband-has-aphasia-talks-in-complete-sentences-in-sleep-431840.htm

You can hopefully glean some useful information from the comments given to this question!

You do need to get your mother on a better sleep cycle. With dementia and Alzheimer's, it's very common for their internal body clocks to get turned around.......sleeping all day & staying up all night, which is difficult for the care givers AND for them, really.

Go to Youtube and watch some Teepa Snow videos......she is fantastic when speaking about dealing with dementia and explaining how to do best handle your loved ones. She's funny too, which always helps a serious situation.

If you don't feel like your mom's UTI has fully cleared up, it may not have. Call the doc who may be willing to prescribe an antibiotic over the phone. The answer is no if you don't ask.

If your mom's hallucinations become irritating or troubling to her, you may also want to speak to her doctor about medications for it. Don't fix what isn't broken, obviously, but if the situation does become problematic, the doctor can likely prescribe something for her.

Wishing you the best of luck moving forward, my friend.
texasrdr22 Apr 2020
Great info and advice, as usual! I plan to check out Teepa Snow on YouTube. Thanks for the reminder and the link to the previous post.
sjplegacy Apr 2020
You asked if her behavior is part of dementia but you didn't state that she has dementia. If she does, hallucinations are certainly a symptom of dementia. Remember dementia is not a disease. It pertains to certain symptoms caused by some underlying issue. Hallucinations are sensory issues; seeing, hearing, smelling, feeling things that don't exist. The strings she saw were a hallucination. However, hallucinations can also be caused by UTIs, Parkinson's disease, or other conditions. The cause of her dementia must be diagnosed. The best thing you can do at this point is to become more educated about dementia and its various diseases. "The 36 Hour Day" and "Learning to Speak Alzheimer's" are excellent books for the caregiver.
texasrdr22 Apr 2020
Thanks so much for your reply. Yes, Mom has been diagnosed with "mild cognitive impairment" but it has worsened over the years. She is now 90 and has difficulty speaking, hearing and seeing. She had a UTI a couple of months ago and I am not convinced it is cleared up with the round of antibiotics she took. Not sure how a doctor would diagnose a UTI via telemedicine! I suppose he could go by symptoms but Mom's doctor does not seem to know that strange behavior is sometimes the only symptom in the elderly.

I have been reading "The 36-hour Day" and will look into the other book you mentioned. Thanks so much for your insight and wisdom!

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dlpandjep Apr 2020
I remember when my Mother went through a similar phase - about 4 years ago.  I would often find her blankets pulled up and she heard "people behind her headboard."  She would get so frightened that it would take an hour or more to calm her down.  Then she went through the "undressing" phase.  Looking back, she's been through many phases - each one a step down.  She's very comfortable sleeping now and sleeps through the night. 

It sounds like your Mother has a sweet nature and that's a blessing.  Mine is sweet natured and that has carried throughout.  Caring for someone with dementia is a learning experience - and frankly, I've learned a lot of things I wish I hadn't.  Take advantage of the resources on YouTube - they'll prepare you for the unexpected.

Bless you Texasrdr - take good care of yourself - get plenty of rest (so important), eat well and get some respite.  Your Mother's care and your sanity depends on it.
texasrdr22 Apr 2020
Thank you, dlpandjep. My Mom seems to be going through the "undress" phase, too. The latest issue is her not putting on another undergarment when she removes a wet one! Normally, it takes her a REALLY long time when she uses the bathroom since she has to do hygiene-type chores in there. Lately, she is in and out in record time. When I check her (and I ALWAYS check!), I find she has neglected to put on another undergarment and is basically going "commando"! Talk about a potential disaster!! I steer her back to the bathroom and hand her the undergarment, which she then puts on.

My mother is a dream to care for. She NEVER complains about anything and basically does whatever I ask her to do. Our only head-butting comes when it is time for her to take a shower. But, we get it done.

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