Next Level: Servere cognitive impairment & hallucinations

Posted by justbill123 @justbill123, Apr 21 9:50pm

When my wife was diagnosed 3 years ago it started with some memory loss and minor cognitive impairment. We have evolved to severe memory loss and severe cognitive impairment as well as hallucinations. She seems to have overnight transitioned to a new level of impairment. She is sleeping a lot more. She started tripping when she walks because she shuffles her feet when she walks. She is in another reality full time now. Has no awareness of time or place. It seems I am saying goodbye again to the friend that used to always be in there regardless of impairments. This is so hard watching someone I love so much slowly fade away like this.

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Bill, I'm sorry. Please have her checked for a UTI or other infection. UTIs are noted for bringing new symptoms suddenly, and they are very common, especially with women. People don't necessarily show typical symptoms, and these are called "silent UTIs". If you have her checked, ask for a culture with it. That will give them the best information on which medication to use to treat it if there is an infection.

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Thanks for the advice Ed, I will have her checked. This is Deja Vu, you gave me the same advice about a year ago on another platform when I was going through an earlier level of progression. What I thought was losing her mind a year ago is nothing compared to where she has progressed. I would take last years version of her again if I could. Good to hear from you over here.

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@justbill123

Thanks for the advice Ed, I will have her checked. This is Deja Vu, you gave me the same advice about a year ago on another platform when I was going through an earlier level of progression. What I thought was losing her mind a year ago is nothing compared to where she has progressed. I would take last years version of her again if I could. Good to hear from you over here.

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My husband was diagnosed with vascular dementia with Alzheimer’s features. A hallmark of vascular dementia is sudden, precipitous, “overnight” declines then plateaus, for a period of time, who knows how long. After eight years of slow cognitive decline, March 2022 brought the overnight one- it was shocking!
The PCP practice squeezed him in for an appt that afternoon, a male friend came and got him to get in the car, we were sent to the ER from the office visit, he was admitted and stayed for 2 weeks. They ran every test imaginable, lots of repeat bloodwork. He had two combative meltdowns in eight days that Security had to be called (imagine two hulking big men standing, facing away from the entrance to his room until he tired and calmed down). The specialists and his PCP and our family was adamant that I could not handle him at home.
So very fortunately, the assistive living that my mother had lived at for 3 years, which we loved, had a single room, knew us, was willing to take him. He is fully ambulatory, but I paid for wheelchair transport to bring him there, I was afraid he wouldn’t get out of the car, they told me not to visit for 2 days.
My sister-in-law and I had worked quickly to set up the room with favorite things, hang pictures, mark clothes, buy twin bedding and make up the bed. They told me when he arrived, they made sure to have staff he knew from when my mother was there up front to greet him.
Fast forward to now, he is in his best health in years with the structure of the home. He gets and accepts his meds and finger sticks (was very uncooperative with me), he eats 3 regular meals and snacks at regular times (would refuse what I made, demand sweets- drive to buy them if I didn’t), sleeps on a regular schedule (would stay up all night on the computer and sleep all day), and enjoys the social give-and-take with staff and a little group of guy friends. He doesn’t ask to go home, when he did in the beginning, the PCP suggested saying, “ Dr. ______ wants you to stay for now to get the extra support.” He accepted this.
Sorry this is so long, just wanted to reassure you that the sudden declines are not unusual and that if things become untenable and unsafe at home, assistive living is not the bugaboo some try to say. I visited a certified Elder Law attorney to get things in place for our financial future, highly recommend.
One last thought on assistive living- I worked in Home Care as an OT for many years, I was in and out of every assistive living in our county and close to the border in adjoining counties. I purposefully chose this assistive living for my mother and husband as it has a “Mom and Pop” flavor, as in “this is your home, you want to wear pjs and a robe to breakfast, come on down!” There are many ALs that have a “medical model” flavor- the staff wear specific uniforms, residents are expected to dress before leaving their rooms, you’ll see cliques form of more cognizant residents who disdain those less able. Please don’t be swayed by chandeliers in the lobby.

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@justbill — Sorry to hear this Bill.

So far my wife's "adventure" w MCI has been relatively gradual, though over the past two weeks I must admit the confusion / memory has accelerated somewhat.

Can only imagine what you must have experienced when your loved one's change was so precipitous. Hang in there. Think the advice mentioned in the other responses is proper: PCP contact, ER visit for mental status change, labs (for possible UTI, and other metabolic issues), and then proceeding w her care as appropriate and safe.

Please keep us posted, and take care of yourself as well.

/LarryG

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JustBill, I would definitely check for a UTI if this has happened so quickly. I don’t know what types of meds she is on, if any, but sometimes a change or increase in dosage can make a big difference. We’ve seen positive changes with the right medications on a couple occasions.

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Bill, my husband has Alzheimer's with hallucinations with similar symptoms as your wife. I really understand what you are going through, and I am so sorry. Is your wife taking a drug to help with some of the symptoms? My husband started taking Memantine and he is having less hallucinations and he seems more relaxed. My husband went from having memory issues to daily hallucinations very quickly.
You have my sympathy,
Katrina

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She is on meds and it is time to make an adjustment. She can't sit still and she is driving me crazy with 2 year old like energy. I am losing the ability to reason with her or calm her down. She doesn't have a UTI she is losing her mind to dementia. Her meds have been keeping some of her symptoms at bay but over time more symptoms more meds. I am sitting here typing while she is frenetically cleaning the house which is just making bigger messes out of smaller ones. She is taking dirty laundry folding it and trying to put it in the tv. Oyvey. Any attempt to stop her and I get toddler belligerence. I really don't know what to do except ride out this latest storm. As she is banging around the house I just keep repeating to myself she can't hurt herself and she can't break anything that can't be replaced. What a nightmare. Oh well this too will pass.

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@justbill123

She is on meds and it is time to make an adjustment. She can't sit still and she is driving me crazy with 2 year old like energy. I am losing the ability to reason with her or calm her down. She doesn't have a UTI she is losing her mind to dementia. Her meds have been keeping some of her symptoms at bay but over time more symptoms more meds. I am sitting here typing while she is frenetically cleaning the house which is just making bigger messes out of smaller ones. She is taking dirty laundry folding it and trying to put it in the tv. Oyvey. Any attempt to stop her and I get toddler belligerence. I really don't know what to do except ride out this latest storm. As she is banging around the house I just keep repeating to myself she can't hurt herself and she can't break anything that can't be replaced. What a nightmare. Oh well this too will pass.

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Hi Bill,

My wife is also very busy disorganizing the house. I have found a kind of solution in tuning into music videos on Youtube, playing on our television. She has a few that she likes, and she will sing along..sort of…more like make word-like noises that sort of sound like the song. This will hold her for a little while, then she wanders off, then back, etc. Without this distraction, or if something else is playing on TV, she just unstacks laundry, hides snacks in shoes, puts books inside other books, etc. Just random but very busy activity. The music thing has really helped, and I put speakers in our bedroom to play THE SAME music at night while she falls asleep. None of this has been a 'solution' whatever that means, but it has helped to break up her intensity. The most successful videos have been Coldplay full concerts and Elton John concerts. Absolutely nothing works here 100% of the time, but the averages have been good with this approach. Also…repetition of the same thing over and over seems to reinforce the good result. It has become familiar. Oh…AGT or BGT videos too.

Rob-

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She could never get into a hobby or a sport before her diagnosis and it is the same now. The only distraction she knows is work. Even though I have taken over all her responsibilities she still thinks she has got to get stuff done. When she was putting dirty clothes into the T.V. I asked what are you doing ? She said can't you see I am trying to help you ? At that point I just let her keep helping me until she gets tired. I stopped trying to keep up with her. I visualize one of those playgrounds they have at McDonald's and that is my whole house when shes banging around and I'm hiding in my office.

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Bill, my husband has gone through a few a few med adjustments that have made a difference. In recent weeks I’ve adjusted the timing of a med along with just a tiny increase. His symptoms were extreme nervousness, shaky hands and having difficulty sitting still for dinner. We moved his night dose from 10pm to 7pm and that calmed him without making him drowsy. He still slept all night when we went to bed around 10:30.

RobertsBrown suggestion of music might help her. Music and dancing are very helpful here sometimes. Even when he isn’t interested, just playing on an old disco song or something to dance to on Alexa and getting up and dancing myself will usually get him involved. It’s surprising how many words he remembers from old songs.

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