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Had another "first" this morning. Mom called me at 5 am (she's been living in Independent/Assistant Living for 2 weeks and loves it). She was confused, said she'd been up all night walking from room to room (she has a 1 bedroom apartment). She said she didn't know what to do. When I asked her about what, she said she didn't know. She told me she is now living in NC (we've lived in NC for over 30 years), and asked if I knew where she is. I told her I am coming over to see her later today and that she should go back to bed and take a nap. She is in mid/moderate stage Alzheimer's and Vascular. I am wondering if this new episode is a sign of how quickly she is declining. Since I moved her into her new place, she has declined. I can see it almost daily in her actions and her conversations. She knows me on the phone but when I'm with her in person, she doesn't know my name and thinks that I'm "that nice lady who comes to visit and help her." Mom maintains her sweet nature at this time, but I wonder if her personality will evenutally change and she will be hard to deal with, I sure hope not. This is hard enough...


Mom hasn't started wandering, yet. I believe that within the next 3-6 months she will transition into fully assisted living. Mom is 83; 84 in March. Thanks for sharing your own stories and advice.

I purchased my wife a clock that has large numbers and letters. The first line spells out the day, second line list the time with am or pm, last line list the month, date, and year. When she wakes up the clock is in front of her on the dresser. Bought it from Amazon.
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AbbyRose Dec 16, 2018
My mom is getting one of these clocks for Christmas.
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If you find out its not a UTI, then consider the AL now. She should not be alone at this stage. Once in the AL take the phone away. She won't need it.

If a UTI make sure she has a catheter done to get all the infected urine. They will start antibiotics. Watch her. My Mom was ok one day and was lethargic the next. Found out she was given an antibiotic with penicillin in it and she was sensitive to penicillin. Once it was changed, she was better. Sometimes it takes a few tries to find the right antibiotic. Start her on cranberry tablets and a probiotic. My Mom had a UTI Oct 2016 and didn't have another one before her passing in Sept 17.
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AbbyRose Dec 13, 2018
Thanks for the great advice. You’ve given me a lot to think about.
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There might be a decline in baseline from moving. Each adjustment is a big deal, as something which would seem just inconvenient or mildly annoying to a younger person is much bigger to someone with dementia.
Obviously this is going to be a good change for her but it's only been two weeks. She'll probably need more time to adjust and stabilize.
I'm 56 and I don't enjoy moving one bit. How much harder must it be to someone who is slightly disoriented?
She may need to move to Assisted Living, as Independent may be too difficult for her at this stage. Is anyone checking on her? Does she have a sitter, companion, or nurse who can visit with her on a regular basis?
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Reply to Rabanette
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Have her tested for a UTI asap. It may be something as easily treated as that. If that’s positive, great.

If that’s negative perhaps she’s disoriented from the move?
Does she have a geriatric doctor? Is the AL accustomed to dealing with dementia residents? Have they said anything to you about her behavior yet? The symptoms you’re describing, if they continue, would render her too far along for just assisted living in my area. More like Memory care.
Dont worry too much about her sweet personality changing, my Mom always was sweet and never changed thankfully.
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AbbyRose Dec 13, 2018
Thanks for your input. I am thinking UTI, too. That will be my first step and then go from there. The facility has not said anything about her behavior but I will check with them when I go there in a little while.
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It is time to take away her phone because you don't know who else she is calling .... even 911 to find her?

I had to do this with my mom & she hardly noticed - on a single long weekend she called her lawyer [found the business card] 9 times leaving long message each time that made no sense - it cost $250.00 us for lawyer to try to figure out the messages -

The lawyer asked [strongly] for me to take the phone away - I phoned the NH to unplug the phone - when I went there I picked up phone I had no dial tone & showed her then I said it needed to be fixed so I had to take it & would return it when it was okay - she never asked for it & only once called me from the community phone

However the staff said she wanted to speak to her favourite banker so she would ask the staff to call him - so they would dial an internal extention where another staff member would answer like they were the bank & when she asked for him then they would answer he was on lunch/on vacation/on days off etc so we have no idea how often she was calling the bank

The staff will not make 5:00 AM calls & when she asks for the help they will gently direct her back to bed - you will sleep better & the staff will have a better handle on her behavior - sounds like a win/win all around
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How much assistance is there at the facility?

My first thought would be to get her checked asap for a Urinary Tract Infection, which often has no other symptoms than confusion and/or agitation in elders.

Does she remember that there is staff on call?
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AbbyRose Dec 13, 2018
Thanks for your reply. I'm thinking UTI, too. I'm guessing this is the beginning of many...
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My mom's frequent UTIs were stopped by the use of a probiotic called RePhresh (I think that's what it was called) and the once a month use of a prescription vaginal cream, prescribed by her Gyn doc.
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I don't think she should be independently living the way you describe her. Handle the UTI and then see about moving her before she gets settled into the current situation. Better to be assistedly living than ill on her own and unable to call! And I agree with not paying for phone service in AL. There's always a phone to use, but the don't always remember where. You can also put your phone on silent during certain hours if it's a mobile, or turn off the ringer when you go to bed and on when you rise for regular phones.
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It is not a problem with having "no sense of time". It is a common symptom of dementia. A clock likely will not help. Mom will either not look at it or be able to understand what it means even if she does look at it. She would never be able to process "I cannot call this early". Too much reasoning for someone with dementia to be able to accomplish, successfully.

My mom in the early stages would call at all hours, 1, 2, 3, am, 10, 11 p.m. And these were calls of anxiety, confusion and fright. She did not know where she was and "who is this man in my bed", "I don't know him and do not want him here". This was when we finally began to understand what was going on in mom's Alzheimer's ravaged brain.

I agree with others, maybe a UTI, or a new decline maybe caused by the move. Changing environment and residence is very hard on those with dementia. Sounds as if she needs memory care rather than assisted living, a higher level of care.
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Reply to gladimhere
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Sorry this is so long....If your mom is living in Independent/Assistant Living, please reconsider and move her to a memory care center, especially when you stated it might not be before long that she starts wondering. If she is mid/moderate stage Alzheimer's and Vascular stage she should not be left alone. Please have her check for UTI too, but she still should not be left alone.

If your mother did wonder there is a big chance that she may not be able to find her way back home. My mother now is in late stages of Alzheimer's now lives in a memory care center but when she was still living alone in her home she did many things that my brother and I determine it was time that our mother should not be left alone any longer. One time when I was visiting mom she just went out the door and I had to hurry up to put shoes on (after that got slip on shoes and kept them by the door) and by the time I got out the door she was at end of the street.  I watched her for a few moments and she was looking around, you could tell she had no idea where she was.  I walked to the corner and calling her name the whole time.  You could tell she was relieved to see me.  She did this with my brother also, so we both made a decision that she could no longer stay by herself.  You wouldn't want something like this to happen to your mother it was pretty scary.

For the first 2 years we hired a lady who knew our mom and she would stayed 3 days and nights, she was wonderful and caring to our mom. For 2 days my niece came to stay, but when it got too much for her we had to go through an agency to provide care. My brother stayed with her on weekends. I was unable to help since I worked and lived 700 miles away, but each summer I used my vacation time to give everyone a mini break. One time when I was there it was an extremely hot summer and mom kept turning off the air, so after the air being turned on and off, I decided to leave air off and got a fan, she kept turning off the fan and opened the door for "air". I stopped this when the mosquito's and bugs got so bad. This didn't go over well. Where your mother is there isn't anyone watching her all the time and they will not know if she leaves or which way she goes or turns off the air or heat since your mom may have no idea of how hot or cold they are, especially in NC.

There are many different types of memory care centers, some are like nursing homes, some are like in home memory care centers (I question the care in some of those. The patients there did not look happy) or some are like mini apartments. This is where you have to personally visit each care center. Do not call them, just show up so you know how clean they are and how patients are taken care of. You might want to show up around lunch or dinner time, so you can see what type of food they are feeding them. We visited this one place and the food looked like slop, crossed this place off our list. There was this one place that was rated very good, but when we went in it was like a hospital no patients about and all room doors closed. We finally seen several patients and they were in wheel chairs and looked doped up. We immediately left and crossed this one off our list. We finally found a great place for my mother, she has a nice efficiency style apartment at the memory care center and it is fairly close to my brother. He stops in several times during the week just to check up on her. At this memory care center she will stay in the same room until the end which doesn't upset them moving from unit to unit as their stages worsen. At her care center she does have to do 2 years self pay and then they will accept Medicaid. So my mother and father saved enough to pay for one year plus we sold our mother's house all goes to her care and staying there.

This care center gave our mom a doll, which she loves and cares for. Since it gives her comfort, we approve of it.
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