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Hi all, so far this has happened 3 times in the past 2 weeks, always around 2:00 in the morning. My 95 year old Mom (vascular dementia) turns her TV on and off with the volume at the highest level which of course wakes me up.


I am trying to get her to pee in the hat I have so I can check her urine for a UTI. I give her D-Mannose every day but I know that's not guaranteed.


Also, she has not started any new medications (she takes the same ones for high blood pressure and a-fib).


She has always been obsessed with her bowel movements since I was a little girl. I was giving her Miralax in prune juice every night which would work sometimes after 3 to 4 hours so I stopped giving her the laxative at night and started giving it to her in the morning so she could sleep without any interruptions. That worked until last night. Oh well, I tried.


She is also moving things around the house. At 1:30 this morning I woke up to the sounds of her TV and talked to her. First I asked her how she was and she said to me she thinks she is losing her mind and wanted to know what was wrong. I explained to her she had a "disease" that many elder people get that is effecting her brain. She asked me if she could see a psychiatrist or was there any medicine for this.


Anyway, I went into the kitchen and noticed my cat's dishes were missing. I went looking for them and found them on the floor next to her bed with food and water. She said to me there were many cats who were very hungry. I said okay.


After we talked and I thought I had calmed her down she got up again and sat in the kitchen with me. She said she wanted to leave here and go home. I explained to her that no one we know is alive and that she owns this house and that I take care of her and I love taking care of her.


Basically I'm trying to comfort her.


I don't know what is causing this and even if it has a name. I heard of sundowning but I thought that happened early in the evening not in the middle of the night.


She has been having episodes of hallucinations and delusions. She keeps asking me if her mother is alive.


The doctor that knows her the best is on a month's vacation or I would have called him.


Any advice would be appreciated.


Thanks, Jenna

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What you described is very common dementia behavior. The waking up in the middle of the night is a challenge that needs to be solved.

Usually UTI behavior is described at "sudden". If possible I would still get her checked to discount it, as D-Mannose is not a guarantee preventative. Can you take her to urgent care since her doc is gone? Any doc would do to give this test.

What does your mom do during the day? Does she nap a lot? Or just sit and watch tv? It's possible her mind is not being engaged enough during the day so that she's burning up any energy so that she sleeps through the night. We were going through this with my 99-yr old aunt with mod/severe dementia. She was being given Tylenol PM to sleep through the night but this was constipating her badly (and causing significant pain). I researched activities for her to do: folding a large pile of kitchen towels, sorting and pairing colored socks, sorting playing cards and poker chips. She does these willingly, every day and she sleeps through the night now, every night. It's worth a try since you can probably find things around the home that she can easily handle.

Other than that I think you can contact her doc or a neurologist to see if should would benefit from other types of meds. It's a hard thing, hang in there and may you receive peace and rest.
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JennaRose Jul 2021
Thanks Geaton, the problem I have with her is she won't urinate in the hat. When she is asked to urinate she won't. I don't know why. So even I can't put a test strip in her urine. I'm trying so hard to do this for 3 days now as a UTI was the first thing I thought of as well. Yes, I'm aware D-Mannose is not a guaranteed supplement for a UTI. If she has one I suspect antibiotics are much better to treat a UTI.

The last time a doctor asked my Mom to urinate she couldn't or wouldn't and we had to leave the office after 4 hours of her trying. It's something mental with my Mom.

She does nap during the day and I've been waking her up as much as I don't like to to that. She stays in bed the entire day (has always done that when she didn't have any tasks to do even when she was younger). Her bed is her safe place. She watches game shows or listens to music on her Amazon Echo Dot. She really loves music.

In the afternoon we usually play cards for 2 hours and we play in the kitchen since we have a large kitchen/dining table. She could go on playing longer then me as I'm the one who needs to stop because I have things to do for her such as getting dinner ready, or just some alone time for me, etc. I think 2 hours of playing cards is enough. Sometimes I feel guilty when I tell her I need to stop.

Tylenol PM is a good idea. My Mom was always an addict since I was very young when it came to tranquilizers. She has always been addicted to Valium and Miltown. Her doctor would prescribe those drugs like they were candy years ago. Now she gets .5 Klonopin at night to help her sleep. But she built up such a tolerance that it really doesn't work. The doctor won't prescribe her anything stronger for fear that she may fall. He doesn't understand her high tolerance.

I don't know if she's capable of folding sheets, towels, etc. I could give her some laundry and find out. She also forgot how to use the telephone a long time ago.

A couple of years ago before covid arrived I would drop her off at a senior place where she would play bingo or listen to someone who played the guitar. But she would only stay 1 hour and complain of a headache (which she still complains of) and I would have to pick her up.

My Mom is anti-social and always has been.

Her doctor who knows her is on vacation but I could call the same office and talk to another doctor who knows her a little bit and maybe he can prescribe something.

Thanks again,
Jenna
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Where is she urinating? If in the toilet place the catch basin in the toilet, some will fit under the seat and just above the water. If she is incontinent and in pull up or tab brief the test strip can be used on the wet brief. (you can buy test strips at the pharmacy)
talk to her doctor about the over night activity.
Melatonin might help but check with the doctor first about drug interactions.
there are other products that might work but with dementia you don't want anything that will result in a "foggy" brain since the dementia is bad enough without more fog added.
When she asks to go home ... reassure her that she is home, she is safe and you will take care of her. No need to tell her that everyone she knows is dead.
Any doctor that her doctor has covering should have access to all the medical information and should be able to make decisions. PLEASE inform them that she has started having hallucinations and delusions. Particularly if this is a change in her mental status.
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JennaRose Jul 2021
I just called her doctor's office and spoke with a nurse. She told me to take my Mom to Urgent Care as they can get a urine sample from her using an "in and out" catheter to check for a UTI.

I have the test strips at home and the hat. She won't urinate for me. Last time I left the hat on the toilet and she pooped in it. Luckily I have another hat.

Urgent Care closes in 2 hours so I'm going to try to get her there before they close, if I have problems then they are open tomorrow.

As far as her asking to go home I first told her she was home and that I am taking care of her. She didn't accept that and told me she wanted to leave. She was really insistent on that and I know I shouldn't have told her that everyone else has passed away but the conversation went on and on and I didn't know how to distract her anymore. I tried to get her to go back to bed and listen to music but she didn't want that. I was half-asleep myself so I wasn't thinking straight.

Anyway, the nurse wants to rule out a UTI and she's going to talk to another doctor about her .5 mg. of klonopin and see if he'll up it to 1 mg.

I hope she does have a UTI so it can be treated.

Also, she's been giving me a hard time about taking a shower so I have been giving her bed baths which she hates.

Thanks for your input,
Jenna
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Update: My Mom does have a UTI. I took her to Urgent Care and they inserted a catheter in her. She started on Keflex (antibiotic) as well as a probiotic.

I feel relieved that she was diagnosed and hopefully the antibiotic will start working within a couple of days.

Thanks everyone for your support, it is much appreciated!

Geaton, thanks again for your input. You gave me ideas on how to keep her busy. She once asked me if she received any mail (which I was throwing away) but now I'm going to give her "her" mail which I know is junk mail. Anything important goes into my filing cabinet.

I'm also going to ask her to fold sheets and towels, what do I have to lose? She may enjoy doing it. She does wash her dinner dish once in a while (I re-wash it when she can't see me) but that would be another task for her to do.

I guess I have been spoiling her, my fault. I know she wants to feel useful and I'm not letting her. I don't know what my thinking has been until you opened up my eyes.

I can call the daycare center and see what they say if I tell them just to ignore her complaints about headaches.

Geaton, thanks so much!!!
Jenna
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Geaton777 Jul 2021
You weren't spoiling her, you were doing your best. I'm so glad you found helpful information here. Trying to figure out how to engage our LO as their personalities and behaviors continuously change from dementia is an ongoing challenge for everyone. The internet is an awesome resource, it's where I get a lot of great ideas and information. Teepa Snow, a dementia expert, has many excellent videos on YouTube where I have learned a lot, as well as on this forum of caring people. Blessings!
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