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and then hallucinating gets worse...

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Yes! My mom still does have good days. She can still put on a good show sometimes. Then Sundowning starts and people are there and she has just been with her mom. My sister and I were just talking about how crazy dementia is! So much back and forth. My mom is somewhere in the middle stages most days. Your not alone on this one!
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Mary
My Fathers like this. Some days completely crazy with hallucinations that are unbelievable. Then he has an alert day and you think you have got it wrong. He is in care home but still tries to manipulate to get his own way. Hard to work it out
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Continued
We have not had diagnosis but tests 1 year ago showed cognitive decline and very likely to develop dementia. Over last few months rapid decline. Seems about stage 5 or 6 from reading the 7 stages. How do you know without official test. Care home nurses in no doubt he has dementia
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She is in her late stage ,normally this happens because like now she finally went to visit with my brother and spent a night ,she slept all night and only got up once for the bathroom. He said she stayed awake all day and last night she never went to bed (to excited from the day).so this morning she is still wide awake in her so call normal mind but has already started hallucinating that there is a bunch of people in the tree outside the window harassing her she won't let you pull the shade down, but by sun downing time she will be completely out of control with fear that someone is trying to hurt her
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Patience 13 my mom was diagnosed almost 12 yrs ago by a special list
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Same here. I think it is the worst disease!
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My mom is about 6 years since we started noticing things. I don't know if I can go 6 or 7 More years! Mercy for all of us.
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We didn't notice much until my Mom was hospitalized. She was always a very independent capable person running her own businesses. Then all of a sudden after the hospital for a broken arm, she began to act crabby, see things, etc. There would be days where she had scary hallucinations and next day be fine and not remember a thing! It frightened me when she was on hospice, bedridden in my home and she would yell in the middle of the night or call for me and tell me that someone was at the front door at 3 am. Then she would be fine for days.
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My mother in law has great days when she is clear as a bell. She could balance a check book, and have a great conversation. The next day she can't recall how long it was since her last shower and leaves her plates on the floor next to her chair. Or stuffs diapers into the shower.
We are like Katie22, we didn't realize something was wrong until she was hospitalized from a fall. Then the 'wonkies' showed up.
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Yes. Lucidity will come and go. With my mother, she was in a much happier place when she wasn't lucid. Her moments of clarity seemed to hurt her.
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My dad was very weird at home. He didn't know who my mom was, wanted to have her removed from their house, talked about a "cult" moving in and that the neighbor was trying to steal his house and car. We had to move him into a memory care facility and suddenly he improved quite a bit. This was hard and we questioned our decision to move him. That was 14 months ago and within the last two months we have seen a notable decline in his ability to function. I think its notable dips and then plateaus, with some bumps along the way. Very strange.
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I have been told to think of it like a loose light bulb or battery connection: sometimes works, then other times kind of wonky flashing/ on and off. Pretty much perfectly describes my mother. Gets up and seems ok. Even asks about something scheduled or something we talked about the day before., Then before you know it, the craziness comes and goes. The obsession with walking back and forth to the bathroom. The Sundowning in the eves and hit and miss with the hallucinations and the
"room being different" etc. I am at wits end. SO exhausted. Care cannot come fast enough these days.
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I forgot to say- I think this is where the term "showtimers" comes in. The old I'm doing just fine when the Dr asks
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My mother passed away last month from Alzheimer's but I was there visiting several months ago and she was abnormally alert and able to talk. We were having the best visit, looking at pictures and such. She could identify people in the pics who had died many years ago. While we were visiting, the nursing home came over and said they needed to do something where we were stationed and asked us to move. I turned her wheel chair around and pushed her to another spot and when I sat down beside her again her mind was just gone. She was just staring into space like she usually did. I was so ticked at the nursing for making me move her. Especially since it turned out they never actually came and used the space they made us vacate.
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My mil has moments of lucidity then it's right back to the dementia. I sure wish I could help you with this. I sure wish I could help her.
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Agree with everyone. Like changing channels on a TV. I used to try and make a connection for the change: a new helper, enjoyed a nice meal, whatever. Now I know there is absolutely no connection with any of her behaviors, good or bad. So now it is just hang on for the ride and do your best.
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For me, the worse part of this disease is that Mom reappears in the mornings as her old self and by afternoon the other part of her appears which is delusional, wants to go home, says there are strangers in my bed (she is in a memory care/nursing home facility), or says she has been robbed. Then at night again, she is herself and denies having said those things or having called me 20 times in 1 hour.

As much as I understand these fluctuations on an intellectual and medical level, emotionally it is still difficult to readjust each time a new stage of her dementia appears.

May we have patience and peace as we go through these times, and love for ourselves as we try to manage them internally.
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Yes. I had an aunt with Alzheimer's. She was about 50/50 with knowing who folks were and what was going on. Sundowning every single evening. During a visit to the ER after a fall in which she had hit her head, she was combative and just awful. The doctor came in and gave her a shot of geodon and it was AMAZING. Suddenly she was clear headed. She knew my name and that I was her brother's daughter. She remembered I had brought her to the ER weeks before. She was able to converse with me and her sister for 2 hours. Then, she started slipping right back into the wonkiness.
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Yes, there are some days when my father seems to be back, as he used to be, very clear of mind and even remembers things that happened a few days ago. Then all of a sudden he gets lost again.
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I want to thank everyone who replied to this post. I am going through a spate of denial. Hubby seems normal. Right now he is putting together a swing. For the last couple of days, I am having a hard time with all of this. He is in the beginning stages, he was diagnosed over 1-1/2 hears ago. Right now I can't see that he has changed at all. It is so confusing. Thanks for listening to me. Of course, I am working to see that nothing is stressing him. I know that has nothing to do with anything.
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My mom had nearly two weeks of almost perfect clarity.... when these periods occur, I can't help but think... maybe... maybe we were mistaken? But I went to see her two days ago, and her caregiver says she doesn't remember I was there... What a horrible disease for everyone! Hugs to all! We need 'em.
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Atypical of the illness as well as frustrating to everyone as well as the family member.
Our family has had members...like it's a club being in a family....who have had dementia/Alzheimer's. I only know on my husband's side dealing with his grandmother. His family thought I was crazy when we would visit Nannie.

GO WITH THE FLOW. I was introduced to my step-sister 3 times in a matter of 5 minutes. We shook hands and did what one does when you meet for the 1st time.
I would do this with Nannie, let her have her conversation, nod and converse like it had just happened or whatever was happening inside her brain. I do the same with both my Mom/stepfather.
DON'T let it get under your skin or upset you. Our daughter is an RN, OMG you should hear her talk to Mom. She treats her exactly the same way as if her grandma was 30 yrs younger and Mom takes it from our daughter too! Daughter has had patients just like Mom and worse at the hospital. Me, yes I feel guilty sometimes because I may need to say something to Mom that sounds mean or like I don't care. What I don't do is coddle Mom, I treat her like Mom.

Take time to watch The Notebook, I think that movie truly portrays this issue in a very bright light.
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I think that what you are explaining is more of a UTI issue than Alzheimer’s. I am no expert on Alzheimer’s but I would think once you have it, there will be no normal days.
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Absolutely and it gets worse. Distraction was the only way we survived. If he does have Alzheimer's, get on hospice and they can help you with all sorts of issues. We even had to change hospice groups in town to find the one that my dad was comfortable with. It's an awful disease and so hard on the caregivers! Here's to hoping you get more good days than bad.
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Relish the moments of clarity. I wish I would have sat with my Mom on those days and had her tell me stories of her early life and all the people in the old photos. I know many of them but not all. As they age and the dementia progresses, you will visit but they won't "be there". It's sad, frustrating and exhausting all at once. My caregiving days are over but my mind is still anguished.
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heidenrespit1 =no UTI in our case. there are many different types and kinds and levels of dementias... as in Parkinsons dementia ..etc.
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My husband had Alzheimer's Dementia. After you have read the preceding comments all patients have times of lucidity of varying lengths. Sometimes the mornings are more normal, but sundowning comes in the afternoon. It became part of taking care of my spouse. One gets use to these times and they offer a connection to how that family member use to be. I was glad to have them. Eventually those normal times fade and are gone. This is part of how caregiving is difficult for the caregivers. You are not alone, just part of a growing group. Possibly, taking breaks from caregiving will be helpful to you in adapting to this. A support group may help also. We all have to find what works to help each of us. Best Wishes.
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Been reading responses and it appears that some have not truly experienced this mental illness.

**Men can suffer from UTIs too**
It has to do with hygiene. The more this illness takes over, the more issues with hygiene happens, especially if they are incontinent.
Mom suffers from this infection in a constant basis; yes it does effect their brain Actually just got a call from the doctor from the group home with lab results. We talked about this issue, she confirmed this too just as Mom's GP had last month.
This illness does not have any certain rules it follows. Unlike diseases that are caused by various infections i.e. West Nile, it has specific symptoms and are treated with a particular regiment of medicines.
Sundowner's is a very progressive sign. One can pretty much set their watch by this part of the illness. I had to explain what Sundowner's is to my sister just last night...she did not know that was what she had been dealing with before she up and moved out of the house after living there for 10+. Surprised that many people in this forum have not been informed about this from the doctor.
It's hard to accept that your Mother, Father or both are disappearing right before your eyes and there is absolutely nothing you can do about it.
If one is becoming frustrated with caregiving, contact social services to help get help for respite. Go to lunch with friends, family, go on a short vacation to rest yourself so you're able to come back and be able to start again like it's day 1.

Good luck and prayers to everyone having to deal with this at every stage.
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MaryKathleen,
My hubby was just diagnosed 2months ago....and I sooo relate to what you're saying.... he's beginning to mid stage the dr said. But there's days that I'm just not sure. He's still working . I feel he's not changing at all and that is what is hard for me....it's the unpredictability of this disease. It's all very confusing....thanks for listening folks.
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