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Two doctors (a neurologist and a nurse practitioner) have diagnosed my mom with MCI, but they have also said that she is unable to care for herself or for her finances. It seems like dementia to me, but all they will diagnose is Mild Cognitive Impairment. She can't make phone calls to schedule appointments because she forgets why she's calling. She sometimes forgets to take her pills. She sometimes gets overly emotional and ready to cry for things that are not a big deal. She asks the same questions and has the same conversations over and over again.


She knows she can't remember anything. Is that the big difference? When she gets to the point that she doesn't know she's not remembering things, will that be dementia?


It seems like none of her doctors are taking this seriously. She also has excellent Long Term Care insurance that will pay for assisted living or memory care, but only if she is officially diagnosed with dementia or Alzheimer's.

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Unfortunately, women's declines are not taken as seriously as men's. Good Old Boy system still prevails today.

I have run into the same thing with my step-mother, I am taking her to Neurologist # 4 on the 9th of December. The other 3 have been complete duds, all they do is say "Let's watch her"... I am... she is losing her mind....

This time I am taking a complete outline on her slippery slide, I am tired of the run around.

Yes, your mother sounds like she has dementia.
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dj85249 Nov 22, 2019
Thank you DollyMe. :-)
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Tell the doctors about the "dementia" requirements on her insurance, and tell them the things that you feel are endangering your Mom. Check the long care insurance policy VERY VERY carefully because often they will not cover a place that doesn't have a full time RN on duty. That, of course is rare as hen's teeth, and more expensive. So take great care in trying to rush any of this along.
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dj85249 Nov 22, 2019
Thank you AlvaDeer. :-)
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Take videos of her repeating herself over and over. Document everything you see happening. My mom's doctor kept saying she had short term memory loss. My brother got her an appointment with a geriatric doctor and after an evaluation (and knowing she kept canceling her follow up appointments) signed a letter saying she was incompetent. This allowed my dad the right to move them into AL. He wanted and needed to move. Your mother definitely shows signs of dementia. Keep trying new doctors and show documentation of her behavior. Best wishes!
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If your mother’s doctor understands that your mother is functionally impaired and cannot safely live independently and he still doesn’t believe that she has dementia, it’s time for a different doctor. Or, contact your mom’s LTC insurer and ask that they do an assessment. I’d try the different doc though.

another option is for you to write a letter to her doctor and describe her dangerous behaviors and inability to perform the activities of daily living. He will have to make that a part of her medical record and he will then have difficulty squaring it with his diagnosis of MCI.

I don’t know why doctors are so reluctant to call dementia what it is. I think they just don’t want to look patients in the eye and say it. My dad’s GP never diagnosed dementia, just MCI, but on day one of a rehab stay, the Occupational Therapist did.
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Peekachu Nov 26, 2019
Some Occupational Therapists and Speech Therapists are trained to perform a test called the Allen Cognitive Level. This gives a clear idea of who the person would be able to function in daily tasks. Another program to look for Positive Approach to Care (teepasnow.com). Teepa Snow, an OT, took the Allen Cognitive Levels another step and teaches you how to help someone at each level. She says that people with dementia cannot change, so those who care for them have to learn how to be flexible. Positive Approach to Care (PAC) is the name of her program and she certifies people in the community to teach it. It is very effective.
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MCI is not dementia, although 60% of people with MCI will develop dementia at some point, which also means 40% will not develop dementia. The description in your post sounds very much like my mother's MCI with short term memory loss.

The neurologist who evaluated my mother and confirmed the MCI diagnosis told me a major difference between MCI and dementia is the person remains able to learn new things and to make good decisions when all the information is available to them. The bank branch my mother had used for years was closing and Mom decided to open a new account at a different bank with a branch just across the street. She opened the new account and ordered checks, which she received. About 6 weeks later, she stopped at the new bank branch to open a new checking account and was surprised to discover she had already opened an account there. The doctor said this was not an example of dis-orientation or broken thinking. Mom knew where she was and why she was there so her thinking was working, she just didn't remember all the information (she had already opened the account) she needed to make the right decision. Short term memory problems lead to longer term memory problems as short term memory is not stored into long term memories. As a practical matter, Mom might add salt to the green beans a couple of times but she won't be adding sugar because she would continue to know the difference. At the same time, Mom needed some help with bills because she had problems remembering which checking account to use. She would check the register to see if she had paid a bill, but she ended up double paying a few bills with one check from the new active account and one check from the old closed account. Mom didn't have problems keeping her appointments because she continued her lifelong habit of writing all appointments down on a calendar.

Mom with MCI can be reasoned with and can adapt to using memory aids like lists and labels to continue functioning fairly well in a normal setting. She didn't have problems driving and never got lost, but I asked her to stop driving because I was concerned even if someone ran into her, the short term memory problems could make it difficult for her to provide LE with her side of the story. She agreed. Her personality remains intact and she doesn't have the aggressive, angry rants my father with vascular dementia did.

My father with vascular dementia retained most of his memory but lost the ability to think and adapt. I first realized how badly his thinking was compromised when I was helping him install a dishwasher and my father with nearly 50 years of construction experience couldn't adapt the plumbing diagram included in the installation instructions with the kitchen sink's plumbing. Dad once decided the fresh water well needed chlorinating and dumped 20 lbs of pool chlorine with algaecide in without telling anyone. Fortunately Mom smelled the chlorine when running dishwater and neither ended up poisoned. Dad became very unreasonable, very verbally aggressive, emotionally abusive, got lost driving down the dead end one lane street he had lived on for over 70 years and eventually even threw things and pushed my mother. People with dementia need much more supervision than people with MCI because the thinking is broken and their actions are so much more unpredictable.
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Mjlarkan Nov 26, 2019
Your anecdotes were very interesting. You saw first hand the difference between MCI and dementia.
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Did they say she had Mild Cognitive Impairment or Mild Cognitive Decline? The second is the new term for Dementia and they are frequently confused.

I would talk to the team that gave you the diagnosis and clarify what they think mom's level of care needs are.

Folks with MCI can generally live alone with some support. Folks with MCD need a more supportive envirmne t, like the type that AL would provide.

Explain your dilemma to them and ask what they think the timeline is for her needing AL.
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Hello dj84259,
I agree with DollyMe. From your description, it sounds like your mother has dementia.
Did you communicate with the doctors the need for a formal diagnosis of dementia/Alz?
If I were in your position, I'd call alz.org and ask for guidance. There has to be a medical professional out there who can help you in getting your mother the care she needs.
I wish you well.
R27
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dj85249 Nov 22, 2019
Thank you Ricky27. :-)
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We actually did the opposite. First doc said Alz and then I finally got my husband to the top docs in Philly and they moved it back to late stage mci. That made it feel less stressful but he is being treated as if he had early dementia. The new doc based his new diagnosis on his high functionality. You can get the diagnosis you need by shopping drs. She certainly sounds like she is in early dementia. Ask the doc why he is suggesting mci ands explain why you need a different diagnosis. Then find another doc if he will not agree. Your Mom is not functional on her own which is usually a dividing line between mci and Alz
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Hello. I can only tell you what I went through with my mom. Her doctor diagnosed her with Cognitive Impairment when I wrote to her about moms Memory. She examined her numerous times and said the same thing...CI.
Since I am her POA, I started to take over paying her bills and managing her financial affairs. Set up caregivers and got rid of her car was not something she was agreeable with. She took me off her bank account but I got legal advice and found out that with my Power of Attorney, I could overrule her. I also kept her doctor informed of what was going on. Mom was spending 3-4 thousand dollars a week at the casino!
i had to close her accounts at the casinos, block her from writing checks over a certain dollar amount.
Finally her doctor agreed to having her tested by a Neuropsychologist.
she tested very low. I had all her doctors write a letter stating her diagnosis. Mixed Alzheimer’s !
Now I’m trying to find the Memory Care facility that would treat her with dignity.
My suggestion is to keep documenting behavior, take pictures of living condition at home, bring Adult Protection Agency into the mix for suggestions and their evaluation. This will help with the LTC questions.

Hope this helps!

Eaglet333
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It was very evident that my mother was sundowning long before she entered a memory care unit. She was being assessed by a geriatrician every 6 months, then every 3 months. The specialist only consulted in the morning so she never got to see the change in the afternoons heading into the evening. When mother went into Respite on the very first night the consultant nurse practitioner identified that mother had slipped into dementia. When we told the original geriatrician she said she had never seen the symptoms in our mother so could not make the change in diagnosis from mci to dementia. The point of this story is that you should perhaps arrange for testing at a different time of day when you know there is likely to be a different presentation to usual, or get a second opinion.
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