Lyndee Asked January 2016
What is the likelihood of someone who is diagnosed with mild MCI and Dementia will always stay that way?
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My oldest sister recently spoke to my Momma's Neurologist on the phone and the doctor told my sister that Momma has a a mild case of MCI and a mild case of Dementia and that she may never get any worse.
Is this true? How common is it that for someone diagnosed with mild MCI and Dementia that they never get any worse?
I hope my Momma never gets worse for her sake and for mine.
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Oh, Lyndee, that is exactly how the huge majority of us felt when heard our loved one's diagnosis. We all want desperately to understand EXACTLY what is going on and what to expect.
MCI may or may not progress. If it does, the diagnosis is generally changed to early-stage dementia. That your mother's doctor gave both diagnoses seems odd to me. But by the time you got the word it was third-hand so it is hard to know exactly what the doctor said.
It would be ideal if you and your sister could go with mother and sit through her appointment, so you both hear the news directly. Would this be possible for her next appointment?
Dementia is NOT a "mild" condition. Far from it. But in the early stages the symptoms may be mild. Or in comparing two person's with dementia you might say "my father's symptoms seemed milder than aunt Betty's." Your Mom can't have a "mild" case of dementia, but she can be in the early stages with mild symptoms.
MCI doesn't always develop into dementia, but if her doctor thinks it already has in Mother's case, then it will get worse. Dementia gets worse. It is what it does. But no one can tell you how fast it will get worse or how bad it will be or how long it will last. My husband had extremely severe symptoms in his first year, significant improvement and a plateau at relatively mild symptoms for about 8 years, and then a physical decline in the tenth year. An autopsy confirmed that his diagnosis ten years earlier was correct.
I don't think that my husband's progression was "typical" but the fact is that dementia is very hard to predict, even for professionals.
Whoever is with your mother most (you and your sister?) will know when the various "times" come. You will know before the doctor does that mom should not be left alone in a care. You will know when it stops being safe for her to walk to the post office on her own. You will observe when she should no longer use the stove. You will know when your help is not enough and she needs either in-home professional help, or perhaps being placed in a care center.
Confusion is not productive for anyone. But it is not exactly the doctor's fault. Dementia is a very confusing condition. Next visit, ask the doctor if she has an idea of what kind of dementia may have. Ask for the prognosis. Don't be surprised if the answer to both is "It is too early to tell."
Act on what you do know so far: Your mother has early stage dementia.
Join a local support group for caregivers of persons with dementia.
Begin to educate yourself on dementia in general, and later, if the doctor can pinpoint it more, on the specific kind of dementia your mother most likely has.
AgingCare is not exclusively for people whose loved ones have dementia, but there are enough of us here to provide lots of support and suggestions. Keep coming back. We'll help you through "when the time comes" for all the many times that are ahead of you.
My Dad has dementia. He has always refused any testing but it's clear what's going on. It might be alz or some other type of dementia but we have to deal with his memory issues and watch out for him.
From all that I know and have read about dementia I think it would be a very unusual case of dementia if it did not progress over time. This is not a ONE MAGIC ANSWER issue. I would suggest that you and your family personally observe your mothers abilities, or lack thereof, and take the necessary actions to make her safe.
I would object more to her being left in a Walmart parking lot than to the fact that she's alone in a running car. But I agree, it does sound foolish.
As to the neurologist. My aunts neurologist gives me a written report after each visit. It also goes to her primary. I find it helpful as I can easier track her progression by comparing one six month to the next. If she has been placed on a new med I can reflect on the past six months and wonder if I have noticed new symptoms, diminished or even improved behavior. Our minds can be affected by our diets and exercise and lack of disease ( think UTI) recent surgery, many factors, from one six month to the next. It's not like a light switch going off and on. Find yourself some questions that are meaningful to you. Ask mom the same questions every six months. Record or write down your answers. The date, the president, her birthday. Compare the answers. Have her do some simple things like walk heel to toe, walk backwards, rise without the aid of the arms on her chair ( these might be too hard). Again, it's just a snap shot in time but you will probably be able to tell something about her progression. After the initial tests are run, it seems to me that this is pretty much all the drs are doing up until the time something more drastic is needed to be done. I like the six month interval because it gives me time to focus on her mental health alone for that session.
Your sibs might be so relieved that mom is out with her friend that they will not find fault with anything friend does. Life is meant to be lived but friend probably should take mom home before grocery shopping. Have you discussed this with friend? If it makes you anxious she might reconsider. You could also share the drs report with friend if you think it would make her more responsible when she is out with mom. It could also make her stop her friendship. Everything has to be considered and then it's helpful to turn it over to God. I probably have God in the wrong order here. Just remember YOU nor POAs have the final word. I hope you and your momma have a great weekend.
And your mom should never be left alone in a running car. Somehow, you will have to get your siblings to understand that leaving a dependent adult in a running car is like leaving a child in a running car--dangerous!
I brought this concern to all three of my older siblings which happen to be her POA's. None of them are that concerned about it and that deeply troubles me. ANYTHING could happen to Momma!!! She could fool around the vehicle and make it move that could cause damages to her friends' vehicle and someone else's vehicle or her friend's car could hit and possibly kill another person putting their groceries in their trunk....the possibilities are endless!!!
Who would be liable for this if any of this would happen? I'd say not only her friend would be liable, but my older siblings who have POA status. Am I right or am I wrong about all of this? I'm worried and a nervous wreck!!! Any advice from any of you would be most helpful. Thank you in advice.
I'm confused badly.
Countrymouse, I have no idea if my sister has our mother's permission to share her medical information. I'd have to ask my sister. I actually thought that this Neurologist doesn't know her butt from a hole in the ground.....but I could be wrong.
Pamstegma, I too thought that maybe my sister sugar coated the dialogue too.....why I have no idea. I need to know exactly what I am dealing with for sure and be properly armed with the knowledge of what to do when the time comes. This confusion is not productive for me or for the care for Momma.
Does your sister have your mother's permission to share her medical information? It is possible, I grudgingly admit, that the neurologist was giving her the barest synopsis to avoid a breach of patient confidentiality.
Mild cognitive impairment is not a disease but more like an observation without a diagnosis. It can be temporary.
Angel