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I wrote a response yesterday but thought I should follow up with what happened after that. I got a call from Mom about 5:30 last night. She never calls as she doesn't know how to use the phone or remember my number. She was extremely upset, crying and trying to explain why she had to "get out of there". She couldn't explain it, didn't really know why she was as upset as she was and thought she had dialed the phone to call me (the nurse later told me she called for her). I tried to calm her down by asking some questions about what was going on that caused her to feel like that. My brothers and I had a video chat earlier in the day that was great! I was at a loss what to say to her. She finally got so upset with me for not understanding, she hung up on me. Wow. I immediately called the nurse's station and they said that she had just gotten up from a nap and had asked them to call me. She hadn't acted upset with them so they had no idea what was happening. Of course, I immediately jumped to "Is it a UTI?" or something else. I told my brothers and one of them called right after dinner. He said she seemed OK although upset with how she treated me but he got her laughing.

I'm sharing this because, once again, just when things seem to be going in the right direction, the dementia kicks in and you can be right back to square one. I never know what to expect and that is so stressful. But, I also know that things will probably be different again today - hopefully for the better!
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disgustedtoo Jun 2020
Did anyone follow up on the UTI? Our mother's first UTI (and believe me, I was a skeptic until this happened!) at MC resulted in afternoon-early evening meltdowns! The first night they called me and wanted me to come up, though I had no idea what going there would do! By the time I did get there, they had managed to get her into her room with a magazine. Repeat performance every afternoon (started on a Friday, so no doc access until Monday!) Mornings she would be fine, with no recollection. Later evening it would calm down some. We had to get antibiotics AND lorazepam (minimal dose, which took the edge off and was used only during UTI treatment.)

Subsequent UTIs have manifested as night-time bed wetting. Go figure!

If she hasn't been tested, go with your instinct. A test is easy and cheap enough, so you can get treatment if it is needed. Sun-downing (or behavior like your mother's) due to UTI can happen any time of day, but generally later afternoon into evening is common. The "symptoms" might go away, but she could still have the UTI.
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First of all, happy to hear that your brother and SIL are helping out with visits. BUT, him saying "Because I'm the health care proxy and POA, my brother says I have to make a decision about her staying permanently." is rather a cop-out.

You have the authority to make final decisions and sign paperwork, but responsible family members *SHOULD* work together and make a joint decision. That said, you can only try - make the effort to see if you can reason with him, but if one or two attempts are rebuffed, then you go with what you think is best.

Due to logistics, only YB and I are designated POAs, OB was left out as he was not here to sign the paperwork at the time they were done and we didn't revisit them later. I am actually glad he isn't, because during his last trip here 2 years ago to help with the condo clean out and "visit" mom (one time and refused to go again!) he revealed that his true colors from childhood remain - he is physically/verbally/emotionally abusive and is not welcome anywhere near me again!

Although only the two of us are POAs, at the time we had to make decisions about mom, and where she would live (we tried bringing aides in, she refused to let them in after 2 months and that was only 1hr/day, mainly shooting the breeze as she didn't need any real help at that point), I wanted input from both of them. No one wants to make these decisions, but even worse is to have one or more decline to contribute, but then turn it around later and throw it in your face that it is YOUR fault! I had an ex do this - we had joint legal custody, so we should make joint decisions, but he would just say I am with them more, so I know better - later he would try to hold that against me and lie, saying I didn't consult him!!! That was before any kind of email, etc, so regular mail was the only option. CYA.

So, if possible, try to get his input. Perhaps word it in a way that indicates you are struggling with the decision and would appreciate his input. One or two tries and if he refuses, then note it and move on. If/when he throws you under the bus later, remind him that you consulted with him and he refused to cooperate (maybe make at least one request via email, so it is documented.)

That out of the way, I agree with the majority here about not addressing dementia with your mother. 1) she won't agree, 2) she will get angry about it and/or 3) she won't remember the discussion. Dementia lies to the person who has it. Too often in their mind they are many years younger and just fine thank you. Despite having AL in her plans, our mother was adamant she was fine, independent and could cook. She had no real physical limitations at that time, but short term memory was shot and her ability to manage finances, understand something as simple as a W2 or to follow a recipe were history. She still lived alone, so some failings were not as obvious right away. Having installed some cameras helped. Taking the car away required taking her shopping, so it wasn't long before I could see she was not cooking, couldn't remember where she put supplies like TP, plastic wrap, paper towels, etc.

The best you can do with her is push the responsibility back on the medical team (doctor, rehab, etc), encourage her to work hard towards her goal of "going home", and then try to change the subject. Not as easy while we can't be physically in the place to distract, but do try! Use words like soon, later, etc, no exact time frames, even when pushing the doc/rehab scenario.

One thing I am glad I didn't do was participate in the actual move - I had my brothers do it. Not sure if it was that or just somewhere in there she knew better, but she only pestered YB about going back to the condo, not me. After 9 mo, she forgot the condo and would ask about her mother and the house she lived in previously (gone 40 and 26+ years, respectively!)
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