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I had home health nurse come and check my mom for a UTI because she has recently started wetting the bed (she didn’t have one thank goodness) and the nurse asked mom her name and she didn’t know it! Is the bed wetting and forgetting her name a new stage of dementia? Mom was only diagnosed with mild dementia about 8 months ago and after reading about the stages it seems like this is a much later stage than mild. Could it be something else ? Sorry if this seems like a crazy question but I’m new to this and just really concerned about my Mom.

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More it is a matter of not remembering in the short term, and not being able to communicate well enough with us; think of a young child with autism. Often it is "all there" but it is delivered differently. In the matter of the brain you have white matter and grey matter. Often an MRI tells which of these we are "losing" with dementia. The easy non-medical way of saying it is that the Grey Matter is where thought is generated, and the White Matter CONVEYS that thought to other parts of the brain. In the case of your Mom she may have the information, but be unable to convey it correctly. As to the bedwetting, time to have a Urinalysis done with a culture to be certain there is no difficulty. With age our mucous membranes, without estrogen and other hormones, thins. As the woman's urethra is so short this thinning makes it more and more difficult to hold urine. The urination system is a complex one which operates on both conscious and unconscious thought (think of when you are out shopping, kind of have to go but are fine, then near the bathroom and your autonomic system begins to let go of that urine. So it is both voluntary control and involuntary. With some dementias the voluntary control gives way. Especially at night when normally we waken and get up, but in later years we may not.; All of this is pretty complex. Basically you deal the best way you can with what you are dealing with in age as there are so many interacting factors and each of us is as individual as a fingerprint on our thumbs. Good luck.
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DBM
I think your experience with mom not knowing her name and you being surprised is not that unusual. Tomorrow she may know it. It’s like a dimmer light switch with a short. The light is always on dim but brighter some days and then one day it doesn’t come on at all. The HH nurse was asking questions that you don’t normally ask so it caught you by surprise. One day I asked aunt to sign something. She was aware enough to ask what it was she was signing. I was delighted she asked. Then I looked and it was her maiden name she had signed instead of her married name. Another decline.

I’ve taken videos of my aunt with my cell phone. I hold it so that she isn’t paying attention to the phone. Then I ask her questions in a conversational tone. Her name, her moms name, her maiden name, her address, phone number, social security, her birthday, questions about her siblings, her work, her extended family. Whatever she seems interested in. Some answers are funny. Some are way off. Sometimes she will say something like “get me started” and I’ll name a couple of her nephews and then she’ll pick up or start throwing in someone else’s name. Sometimes she simply says, I don’t know. I try not to go too long and adjust when she gets stumped. The last thing I want to do is upset her or make her worry that she can’t remember. She likes the conversations. She especially likes stories that I tell her about things she did when she was younger so it’s all wrapped in light banter and not stressful. Sometimes she doesn’t know how old she is. She’s often amazed that she is almost 95. I enjoy going back and looking at the videos and it’s a easy way to introduce a new caregiver or doctor to the relaxed friendly version of her personality when you need to explain why you know something is up with her that is out if the ordinary.
Aunts memory seems like a stream flowing by full of bits and pieces of her life. She is able to retrieve some items, some she misses altogether, some she misidentifies and all in all it doesn’t seem so very bad but if I go back in a week or two and do the same exercise I can see the difference between the two videos and I know that she is declining.

About the UTI causing the confusion. I always check for that as you did but when I check it is because her behavior is unpleasant or a type of acting out. Just being more forgetful wouldn’t make me think UTI but I suppose it could be so thanks for that idea. The bed wetting, yes, I would think UTI if it came out of the blue. My mom didn’t have that problem and aunt progressed to that but started off just not making it to the bathroom on time. Do make sure she is well hydrated as that can cause a different set of problems as well and if a UTI is brewing it will help.
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People suffering with dementia have good days & bad days. Some days they won't know their own name, while other days they can remember a small tidbit of information from 20 years ago. That's the truth, too. My mother is 94.5 with advanced dementia; some days she's 'riding the subway to see mama & papa' who died in 1985 and 1943 respectively, and thinking she still lives in NYC. Other days she is quite lucid and reminiscing about something that happened years ago. Yesterday she was calling my husband Angelo when his name is Chuck. She didn't recognize her granddaughter at first, but then knew who she was after about 5 minutes. Your mother was caught off guard by the home health nurse; someone she didn't know. Dementia patients are not good with new people and new information; they can't process it. So that's probably why she wasn't able to IMMEDIATELY recall her name. If the nurse had asked her a little later on, she may have known it. See what I mean? Put a dementia sufferer on the spot and chaos ensues.

My mother's dementia BEGAN with incontinence; she had to start wearing Depends at the onset of the dementia back in 2016. So she was the exception to the rule that incontinence & bedwetting occurs later on as the disease advances.

I doubt it's 'something else' going on with your mom b/c dementia is more than enough going on in her brain. It's scary for US, as daughters, to witness this kind of behavior in our mothers. I was just saying that to the caregiver at my mother's Memory Care AL yesterday; it's one thing to witness the odd behavior in someone you don't know; but to see it your own MOTHER is something that's very hard to process. I know; I live it daily. So when she's off in another world insisting I'm 'going out on the town & have hired a babysitter to watch the baby', I just agree and tell her yeah mom, I'll be home later. My 'baby', by the way, is now 36. Learn to enter HER world instead of trying to convince her to enter yours; life will get a bit easier that way.

Wishing you the best of luck dealing with a difficult situation.
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Yes they do forget who they are, I have late stage serve dementia.i forget who I am .all the time , I will be going to the end stage ..go into dementia website .and get all the Information you need ,it give them a call.this is all part of the condition.
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schwester Sep 2021
Best wishes to you for a happy next stage! So kind of you to helpfully respond to this question.
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Dementia can progress very fast in some people. Many different factors could be at play here too like a major disruption in the daily routine or a trauma of some kind. These things can easily turn mild dementia into serious, invalid dementia.
My aunt had mild to moderate dementia symptoms for nearly ten years. She was declining but slowly. Then her husband (who was her caregiver) died suddenly and unexpectedly. Within a couple of months her dementia progressed to the point where she didn't know her own name or where she was and had to be put into a memory care facility. It can happen fast.
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Trani7 Sep 2021
This is my biggest fear. What happens to my husband should I die. A spouse can be helped by a loving spouse caregiver, and can be kept alive with good care. Without that, and god forbid it happens that the spouse needs to go into a care facility, that's the end of the dementia/alzheimer's victim. Of this I'm sure.
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LIVING WITH DEMENTIA

1. Agree, never argue
2. Divert, never reason
3. Distract, never shame
4. Reassure, never lecture
5. Reminisce, never say "remember"
6. Repeat, never say "I told you"
7. Do what they can do, never say "you can't"
8. Ask, never demand
9. Encourage, never condescend
10. Reinforce, never force
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garfield8 Sep 2021
Thank you for these reminders. Seeing it in print somehow helps me to remember what I already know but don't always practice, in spite of good intentions. I'm going to post it where I can see it frequently but my husband can't. He can't always understand what he's reading, but I don't want him to feel manipulated. It reminds me of a co-worker's explanation of one of her daughter's disabilities: she could read at a high level, but her comprehension was much lower.
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BEd wetting could just be leakage, dreaming she was on the toilet or just not getting to the toilet on time.
Dit's she take meds at night that cause drowsiness?
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"I had home health nurse come and check my mom for a UTI because she has recently started wetting the bed (she didn’t have one thank goodness)..."

Assumption is a dip stick test, yes? Sometimes those are not sensitive enough. I would request a urine culture, just to be absolutely sure.

Progression of dementia can vary a lot, depending on the underlying conditions and what type of dementia it is. In general, memory is lost in a backwards progression, short term memory first (inability to retain new information, remember what one said or did just minutes ago, etc.) As time goes on, most often more and more of past, but more recent memories are lost. This can be very different for other forms of dementia. For instance, my mother forgot about her condo 9 months after moving to MC, and based on various comments, questions, etc, I determined that she was living memories from 40+ years ago - asking about her mother and father, her previous home, mentioning a baby who was actually about 40 at that time. She remained at that plateau for the next few years. Most likely she had vascular dementia, and given more time, she would likely have lost those memories and drifted further back in time. She still knew who she was, who I was, my brothers, etc, but because YB's kids were so much younger, she forgot them (they wouldn't have existed 40 years ago.) My kids were on the cusp of that time frame, so she was aware I had kids, but thought of them as very young.

Sense of one's self shouldn't really be lost in the earlier stages, but anything's possible with dementia.

I would, again, highly recommend a urine culture. My mother's first UTI in MC resulted in serious sun-downing, which she never really experienced before and never did after. However, the next UTI resulted in night time bed wetting - serious wetting, despite a max brief* and a max pad inserted, along with toileting before bed. Dip tests can be false negative.

If possible also get blood work done too. Other infections or imbalances in the system can cause really odd things in elders, especially when they have dementia.

* NOTE: although she was wearing briefs, she was still mainly continent. The "accidents" she would have were due to being unable to get undressed fast enough to get to the toilet! So, bed wetting was really NOT expected at that point. After treatment, that stopped. Once she was in a wheelchair, she still would ask to be taken to the bathroom or agree to go if staff suggested it.
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DBM1941: Imho, a few things to consider are #1 Did they just do a dip stick test for a U.T.I.? And if so, that's not conclusive enough., #2 Since she has dementia, she is going to have some good days and some bad days. and #3 Is it possible that she didn't hear the home health nurse's question due to poor hearing?
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Thank you everyone who took the time to respond. She definitely didn’t have a UTI because it was sent to the lab for a culture.She does go next week for blood test. She goes every 3 months for blood testing.Thinking back over the last couple of years and I’m sure she had earlier signs of dementia then. I just thought it was age related.She has just started to really decline in the last couple of months. She could of possibly had another TIA . The first MRI showed several of those and we never even realized that she had them.
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Llamalover47 Sep 2021
DBM1941: Thank you for the update.
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