Mild/Early Dementia

@Alvadeer, when she fell the other day, I was called about it. It was Thursday night. I was told that they tried calling my brother first but he didn't answer. That is why I was called. Then he stopped by last night and asked why he wasn't called. I guess they told him. Then I found out that he told them since I know more of the medical for them to call me first. He is the poa and is to be first for them to call. Now, I hope that people can understand why I am,for sure, going to be her healthcare rep. Going to have her sign it tomorrow and have it notarized by the notary at our church.
So from then on, I will be taking total control of her healthcare. Guess that means that I will be her POA for healthcare? And then I can send it to her atty so he has record of it. I did it first in January and they never contacted me to tell me that it wasn't legal since she didn't sign it. Now it will be. I don't think that Rick really cares as he knows that he can trust me. Just wish that I can get her on one of her good days and take her to her bank to get a copy of her statement. He has total control of her money and I'm glad that he does. He is very organized and I'm not. :) To those who do it all, I congratulate them.

Hi Judy,
Glad you decided not to leave the forum.
I think that you will find doctors will admit that it is sometimes difficult to pinpoint exactly what type dementia they are dealing with. Certain changes in white and gray matter frontal or farther back in the brain sometimes show and sometimes a type is ID'd a bit more by symptoms. That's the case with my brother's probably Lewy's Body Dementia. Diagnosed more by symptoms than anything else and they come and go dependent on how anxious he feels. There are days I speak with him and he is perfect, as bright as me, more so often enough. Other days he is less acute, more forgetful, a bit slurry and blurry. His balance is poor and that is both a Lewy's sx. and the fact there is a benign decades old brain tumor sitting over the medulla, the balance center; so while he has not yet "gone down" it is a certainty. He has a rather lurching almost drunken gait. It has not been that long that we didn't lump together all dementias into just dementia. We didn't differentiate because the knowledge is all so new, and as my doc loved to say about cancer "anything but an exact science".
So your Mom's case is as individual to her as a fingerprint. As a bad back, the like of which is different for each individual.
It sounds as though your Mom is doing well where she is and I am so glad of that.
I don't know why the facility where she is isn't able to communicate with your and your brother both, but they may have rules about "one contact". I will continue to hope that you and he will communicate well with one ANOTHER in this time of stress for you both. Just sticking to the "facts" of how Mom is, what concern you might have. No argument. You already know you are sort of polar opposites, so that is a given, and I hope you have accepted that people don't really change who they are (tho I continue to work on my partner, hee hee). So given that you can perhaps form a more formal partnership in your Mom's interest, leaving aside anything about your own marriage partners and just communicating perhaps once a week with one another briefly.
It sounds like things are more stable for you right now, and for your Mom. Doesn't mean there won't be a monkey wrench periodically thrown in the mix, because that's life.
Wishing you good luck and again, glad you decided to stay. Whether or not we get ruffled once in a while there is such good info here; I have learned so much.

@Alvadeer, I'm still here. ;) I was just upset.

@BarbBrooklyn, thanks! When the neuro psych doctor saw her, she didn't know her when she was doing much better earlier last year. Since she didn't have a stroke, I don't know how her family doctor said that she has VD. Talked to mom yesterday and her memory was sharp. She wasn't able remember my brothers and my birthdays but now she can.

Yesterday after supper at the facility, she was in her room and she fell. My brother was called first and he didn't answer, so they called me. Went over and she was fine. Just shook up. Today she is sore. I did suggest to "Maria" to try and have her use her walker for a while to help support her. Just hope that she takes the suggestion. Plus it would help her to walk a little better.

Sorry to hear about your mom.

My mom has never had a stroke. Not that we know of. Since I work with her doctor, I have been keeping her up on things.

I don't think that the neuro psych doc could put her finger on what the exact type of dementia is. Do you remember the "clock drawing thing"?

I just talked to the facility tonight to find out how she was doing. While they had me on hold, I heard my brother in the background talking. The caregiver that I talked to told me that since I work for her doctor and know more of the medical that it was okay for them to call me instead. He will still go over there and see her. But since I am her daughter, I just think that I can relate to her more often? Since the caregivers are there more than I am, she has her good and bad days. But is starting to talk a lot more with her own peers. That is what she needed.

If my mom lived for 4 years longer, that would be nice. But only the Lord knows. It could be tomorrow,only He knows.

Thanks for being there for so many people. You mean well. I have learned also to watch the things that I say. I know only about my mom's situation.

I just pray that my brother will see how well she is doing where she is now and how happy she is doing. Money right now, shouldn't be the issue. When January comes, we will see.

Thanks again!

Barb in Brooklyn,
Not too many days ago Judy posted saying she thought this forum wasn't for her. She asked how to leave the page. I think she may have done so.

Bumping up for Judy to get some answers to her questions.

Judy, my apologies. I was trying to gain some clarity about your mother's situation.

I think the website alz.org would be a good starting point for reading about different types of dementia.

Sorry if I came off as a know-it-all. I'll try to watch out for that.

My mom, who died 2 years ago, was initially diagnosed with Mild Cognitive Impairment. Her neurologist told us that MCI sometimes progresses to dementia and is sometimes non-progressive. A year after that initial diagnosis, mom's cognitive skills were the same.

Then she had a stroke. A few weeks later, she became delusional and paranoid. She was diagnosed with Vascular Dementia while in rehab. Another neurologist suggested that she might have both VaD mixed with Alzheimer's. The way her symptoms progressed was more suggestive of Vascular Dementia than of Alzheimer's.

My mother declined over the 4.5 years after her stroke. She would be stable for months on end and then have a sudden decline. My understanding is that this is pretty typical of the progress of VaD.

I was trying to clarify what sort of dementia your mom had been diagnosed with so as to offer you better support.

I think you might consider talking to the doctor who did the testing to ask specifically if it is expected for your mom's dementia to be progressive. It is my understanding that ALL dementias are progressive but you should certainly ask.

I wish you and your mom well. You are certainly lucky that she has the funds and insurance to private pay for her care.

I just found this link. You might find it useful. https://www.google.com/amp/s/www.dementiacarecentral.com/aboutdementia/facts/stages/amp/

Judy, all types of dementia are progressive. It’s the nature of the disease. Your mom is going to get progressively worse. It is a given. I don’t know what to tell you other than I am so very sorry. I know this is a difficult situation and it’s all hard so hard to process :(

Okay, you know all about my mom. I forgot. The neuro psycho doctor said that she can have this kind of dementia for 15 years. She is 88. I already know that she has dementia. And you have no knowledge about her to say that her type of dementia is progressive.

You tend to be the kind of person on here that seems to know about every situation. Until you know the person's history, you should lay off your giving opinions and just sympathize and pray.

She was worse off when she was in the apartment after she sold her home. And right, she seems to be content there. Although she does have a urinary incontinence problem. Just wonder if she has a uti. Going to talk to her doctor again about it. There is another lady that is there that seems better than my mom. She is a very happy person. Just like my mom. Not sure how long that she has been there.

There is the current facility that she is in and will cost about $5,500/month. It's about $250 more than what she is paying. Moving her wouldn't be good for her mental and cognitive issues. That is why I decided against her moving again so soon.

My husband is staying out of it and so should his wife. My husband will talk to me about some things and give his opinions but that's all.

I can't talk to my brother about it. He has already made up his mind about moving her in January. He didn't ask my opinion, just said that it was going to be done. He talked to her LTC policy. The executive director where she is now has e-mailed him 2 times and so far, no response and that isn't right. It should be part of my decision also but he isn't making me part of it.

And yes about the documentation. The LTC policy doesn't know about her situation except for what my brother has said. Don't know what they mean about around the LTC. It would either her moving into assisted living there or stay in the memory care area. In the AL location, no one would be wandering into her room. Where she is now, there is a new person (man) that just moved there......

I do apologize for getting snippy earlier. But it's just the things that you say. You mean well but it's how you come across. I know that I get some people confused with what I say and how I say it.

Have a good evening...

So, Judy. Circling back, your mom has either non-specific dementia or vascular dementia, depending on which doc you talk to. She has dementia. That is a given here. It is progressive.

She is in a facility that you found. She is content there. You think that she is not as bad off as the other residents. Is that correct?

Your POA brother wants to move mom?

"He said that is January, it would cost about $5,550/month for there. "

Where is there? The old facility or new facility is $5500 per month? Will LTC cover this? Brother is financial POA and you guys needs to work together to get your mom the care she needs that is within her means, SS+Pension+reasonable SWR on her investments.

Although you are Healthcare POA, you need to be mindful of what is within her means. You can't just order brother to pay.

"He didn't discuss any of this with the facility but I did. They said that there could be a way around it. "

A way around what? Around the LTC policy not paying?

"Plus they haven't sent in their documentation for the reason why she is there. My brother just told them.  Her thinking mentality is still there."

"They" meaning the facility hasn't sent on documentation to...whom? The LTC insurance company?

"Her doctor said that she has vascular dementia but that hasn't been diagnosed yet. The neuro psych doctor didn't say that. Just the mild unspecified dementia."

Does she have a dx of VaD or not?

"My oldest brother has taken the money from the house and put it in her investments that she has. He said that she told him to do that. Guess so that it would stay safe. So all that she has coming in is my dad's ss and his pension. He said that is January, it would cost about $5,550/month for there. He didn't discuss any of this with the facility but I did. They said that there could be a way around it. Plus they haven't sent in their documentation for the reason why she is there. My brother just told them.  Her thinking mentality is still there.   Did I answer your question?"

Judy, frankly, I cannot make heads nor tails of what you have written here. I asked if her LTC insurance would pay for her current unlicensed facility and if not, does she have enough funds to pay without insurance.

On a weekly basis, I have a conversation with the daughter of a woman in the Memory Care community I work at. Her 82 y/o mother is there, and the 'only person there without dementia.' Meanwhile, the woman stands at the front desk, repeating herself to the point of insanity, over and over again, asking the same questions and having the exact same conversation with me continuously. Never mind that a person without dementia cannot be admitted into a Memory Care facility without a doctor's diagnosis. That makes no difference to the woman or her daughter, as they are both adamant that there is no dementia involved because she is 'not as bad as the others.'

We have another gentleman who insists that his mother, with moderate to severe dementia, will 'get better' if she were to be treated properly and paid attention to in the way he sees fit. That she will be back to normal, in his mind, if only things were done properly. This is in spite of her doctor telling him otherwise, and of the literature on the subject telling him differently.

We all choose to believe what we like, what makes us feel better, what we're comfortable with.

Dementia is not just 'age related', it's a formal diagnosis of a brain disease based on a specific set of symptoms. My father was 91 when he died, and showed no signs of dementia whatsoever, in spite of his advanced age.

My mother was diagnosed with progressive dementia in 2016 and I've watched her progressively worsen with time. Is she 'as bad' as the other people she lives with in Memory Care? Nope. But she still belongs there. Why? Because she's incapable of performing daily functions of life due to severe memory issues. Does that make her 'less of a person'? Of course not. It just makes her a 92 year old woman with a progressive disease, through no fault of her own.

It's of interest to note that my mother is the queen of showtiming. When she's speaking with others, they say Gee Whiz, What Are YOU Doing Here? And they ask me WHY my mother would be living in Memory Care, she's SO SHARP! It's muscle memory she's relying on to make small talk with others, convincing them she's Sharp as a Tack. Ask her a REAL question, and she'd have real difficulty answering it.

Dementia wears lots of different faces and presents itself in lots of different ways. It's tricky, that's for sure. But it's real and it's ugly. And very hard for lots of us to accept.

All the best to you, Judy, as you go down this road with your dear Mom.

@BarbBrooklyn, she just sold her house last August.  So my brother, who is her financial POA, put most of the money into her investments.  So he can get some of that if needed.  So she is not completely broke yet.

Her doctor said that she has vascular dementia but that hasn't been diagnosed yet.  The neuro psych doctor didn't say that.  Just the mild unspecified dementia.

I know my mom.  I know what she says is how she feels.  I'm not saying that she doesn't have dementia but being in that location is doing her better.  I have had 2 people tell me that if she is moved again, that her cognitive abilities will get worse.  And does he want that on his hands? I surely don't.

I can't quit my job. I didn't say that he should quit his job either.   This is hard for him as it is for me.  We just deal with it differently. 

He really doesn't like going over there but I do.  I like talking to the people there.  They are very nice.  You know that a smile can go a long way.

@Countrymouse,  he told my other brother and myself that her long term care policy won't go back and pay for what she has paid there so far.  Which is about $10,000, give or take.  She just sold her house in August so she has the money from that.  My oldest brother has taken the money from the house and put it in her investments that she has.  He said that she told him to do that.  Guess so that it would stay safe.  So all that she has coming in is my dad's ss and his pension.  He said that is January, it would cost about $5,550/month for there.  He didn't discuss any of this with the facility but I did.  They said that there could be a way around it.  Plus they haven't sent in their documentation for the reason why she is there.  My brother just told them.   Her thinking mentality is still there.    Did I answer your question?

Just to add, Judy; my mom passed "mini mental" exams monthly until a couple of weeks before her death. Her MEMORY was intact. Her REASONING skills? Completely out the door.

Judy; two important points.

1. You have told us that your mom is in an "unlicensed facility". I'm not sure what you mean by that, but since your mom has LTC insurance, is that an issue with the insurance company paying for her care? Most policies will only pay licensed agencies and care homes.

It's true that moving your mom might/will cause confusion. But how are you expecting for her care to be paid for if not through her policy? Does she have enough funds to cover her care?

2. You quote what your mom tells you as though it is Gospel Truth. My mom, with early vacular dementia, told us that aides were having sex in her bathroom, that dead bodies were being carted about, that she had to manage her medications on her own, that the basement of the facility was constantly flooding (there was NO basement) and that the facility was being constantly sold.

None of these "facts" were true. At first, we became upset with each new "fact". Finally, one day, I was sitting with mom as Nurse Nancy gave her her afternoon meds. Mom fixed me with her "steely" look and said "you know I have to manage my own meds here". I looked at mom in disbelief; the nurse had JUST dispensed her meds. I sputtered at mom; she pointed with her crooked arthritic finger at her water pitcher and raised her eyebrows with a "significant" look.

Judy, don't let what mom tells you destroy your relationship with your brother. I know you don't like his wife; I know you seem to think that he can retire when he likes, but there is NO REASON why he should retire just because your mom needs care. That is so wrong and so unjust to think that he should give up his full pension; why don't YOU quit your job if that's what is best for mom?

Folks with dementia, I am convinced, are better off in care centers with people trained to care for them, folks who can go home after their shift. This is no job for anyone to do 24/7.

Judy, I think you are still in some level of denial that your mom has a progressive, fatal, disease. It may take years for her to succumb and something else may kill her before the dementia does, but for Heaven's sake, don't make this your brother's fault.

Judy, do you mean he wants to move her again, now, from where she currently is to another facility? Why?

I mean, I wish that you could meet my mother!!!!!! :)

I am pretty sure that they knew that she just moved from 20 years of being in a house. And she was living in an apartment when she "wandered" those 3 times. He hardly ever visited her there but I did. He just visited more so after the 3 time that she was wandering and the police called him. He didn't know about the other 2 times but I did.

I am not bound and determined. It's the fact. She even said that he pushed her out of the house. She didn't have to sell it at first either. 1 day was just way too fast for her. There wasn't even a reason or rhyme to the packing up. No, I didn't help with that move because I was taking care of my mom while he was helping with the movers.

Things were fine between my brother and me until after she moved into the facility. I feel both my brother and his wife are over doing the situation.

I'm not saying that she doesn't have dementia, just not as bad as they think.

She had a neuro psych eval done and it was about a 3 hour test. She did mess up on some things also. They said that it was considered "mild unspecified dementia".

I am the one that is doing all of the research. He is the one who wants to move her after 6 months of where she is. He obviously doesn't know that if she moved again,with her having dementia, that her cognitive abilities can really go down hill.

Once I am her healthcare rep, then he will have to abide by what I decide and just pay the bill. Being her financial POA, that is what his job is.

We haven't been told that she is incompetent yet.

I will let you know how things are going month by month.

Thanks for your words of wisdom. Sure wish that you could matter.

It's good your mother is doing well in her AL. Often, a person with dementia improves when they are in a place where they can receive reminders, get assistance readily, gets their meds, meals, etc. But, there is nothing morally with a person simply because they have a medical diagnosis of dementia. It's not a good/bad person issue and it's not the person's fault. While their behavior may be challenging, they can't help it. It's brain damage.

I have read that age related decline does not rise to the level of dementia, but, I am no expert. Regardless of the diagnosis, if your mother is getting her needs met, that's the important thing. And if she does progress and forget names and faces, that is unfortunate, but, sadly, a normal part of the disease. I hope your mother's prediction comes true and she doesn't progress further.

88 is too old to drive, in all honesty. My brother proved 85 may be as well by almost killing himself and others with his truck.
Early dementia is a tough one. My bro has a benign brain tumor likely there for decades but sitting on the medulla and ruining his balance. Along with that, by symptoms, they think he has an early Lewy's. When he isn't anxious he can remember things better than I can and I am 7 years younger. For him, his assisted living is tough as he is the most well one there, as well and often gets mistaken for the caregiver. There are only two others as well as he is.
What a wonderful thing that your Mom seems to be doing so very well. How lucky it is as it help you and her both. Some do like it, the visiting, the activities, always something going on.
Whether your brother "forced her out" or not, I think you likely do recognize that this day was coming. And you both need to work. This is the best choice and it sounds like she is doing better than you might have expected.
Thos of us on the forum of course would never judge your Mom being "as bad as" or "less bad" because we honestly don't know your Mom at all.
It's all very painful. There's no question. People do what they think best, try the best they can, as they go along.

She may not be as bad today, but, there is always tomorrow. I would trust your brothers decision, let her settle in and make some friend her own age.

It is your choice to stay in denial, no one says that you have to accept what the doctor says.

Judy, you have said in previous posts that your mom wandered several times out of her home in an unsafe way.

What kind of diagnostic evaluation took place last year? Did you talk to the team that performed the tests and did you understand why they thought mom had a specific disease process and not just "old age" decline going on?

From this and other posts, you seem to be bound and determined to make your brother the villain of this piece.

Jjust because your mother tells you something does not make it true. When there has been a qualified dx of dementia, you need to understand that the person giving you information is no longer seeing the big picture with clarity.

Your mom may indeed not be "as bad off" as others here. That does not mean she doesn't have dementia.

I'm glad that your mom is doing well in her current placement. I'm not sure, if that is the case, why you are revisiting the past.

Deal with current issues and look to the future, would be my advice.