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jerry2 Asked March 2022

We got the results of Mom's MRI. Has anyone else experienced this situation? If so, how bad has it gotten?

I recently asked questions about mom and visiting to MD for some concerns about dementia. He did do labs, which were perfect, and an MRI, which showed some deep cerebral lesions in gray matter which appears to be vascular and age based. We have not spoken to the MD about results yet but I was wondering if anyone has had a similar problem. Mom has changed in the last 4 months. At times she is herself other than slow to process and comprehend things. Even things that are everyday. For example, using remote, writing checks, using microwave. Somedays it's good, some days she can’t do them and also she has episodes where she is very paranoid. She feels like people have broken into her house and stolen things but she is misplacing everything multiple times a day. She is quick to accuse people of misplacing or stealing her things. When she is in this state, her whole psyche changes. She later apologizes for it and says "I don’t know what is happening to me." We are very concerned. Has anyone else experienced this situation and if so how bad has it gotten?

TChamp Mar 2022
What the MRI shows is a shrunk atrophic brain with deep groves. This finding is not unusual in very old people and it does not mean dementia. Many people with late stages of dementia have normal looking brains and the opposite is also true. MRI's don't diagnose dementia. Get your mother tested by a neuropsychologist. It's the most accurate way.

lealonnie1 Mar 2022
Vascular dementia is a terrible thing; my mother had it for 5+ years and recently passed last month at 95, but it was more from heart failure (imo) than from advanced dementia. She was having more neurological events the last 6 months of her life, though, like TIAs (we believe) and perhaps a larger stroke the last week of her life. With hospice care, no diagnostics are done, so we'll never know for sure. When the VD gets to the advanced stages, things can get pretty bad & Memory Care should be considered when in-home care gets to be too difficult. My mom lived in MC for nearly 3 years & was well cared for there, with her myriad issues.

Dementia and/or dementia-like behavior can extremely difficult & frustrating to deal with, and the behaviors are subject to change continuously, too

I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580


Here is a list of useful tips from her e-book I found to be excellent:

The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience

The "Do's"
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment

Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently

Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.

Another good book is Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's, by Diana Friel McGowin. Learn all you can about AD/dementia b/c knowledge is power!

Wishing you the best of luck with all you have on your plate.

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gladimhere Mar 2022
What you describe is dementia.

Read and learn as much as you can about the disease. It will get worse. Use this website and read "The 36-Hour Day". Good luck to you.

Beatty Mar 2022
While the plaques & tangles of dementia cannot be seen on MRI, I believe past or current vascular events can be.

Dementia is diagnosed really by cognitive testing, reported & observed symptoms, behaviour.

Trust your gut instinct - you know her best. Keep looking for answers while you move towards keeping her safe.

Does Mom live with you, others? Or alone?
jerry2 Mar 2022
sorry to take so long. mom lives alone but we live across the street so we see her daily and are called over numerous times a day to help find things that ‘other people’ have misplaced. we eill see what neurologist says after we are given appt. it will be difficult because she is very strong willed and will not accept help.
againx100 Mar 2022
Going through a similar situation with my mom. Steady decline for years. Her labs were fine too. Doc made some med changes which did not help. Tried CPAP for severe sleep apnea but she wouldn't keep the mask on. Her MRI didn't show much but we are also waiting to meet with the doctor to go over everything next week.

It's kind of a roller coaster. Some moments, she seems pretty normal, other moments its like "what the heck is going on here???". She does things similar to your mom - loses remote or doesn't know how to use it, wants to make phone calls with the remote, can't figure out her cell phone (but sometimes does), etc. My mom's doc said she's progressed to dementia but I'm interested in seeing if the MRI confirms this and if it gives us a better picture of our future. I know it's not going to be good and she will just continue to slip away.

Do you have any helpers for your mom? If not, start with some ASAP. I started with a cleaning lady. Now have added people to help her with her PT (and chat and play a game). This is paving the way for more help as it's needed. Many are resistant to help in the home - my mom is always trying to cancel but I've told the helpers not to cancel unless I say so.
jerry2 Mar 2022
sorry for taking so long. sounds like we are seeing the same symptoms. unfortunately mom is very strong willed and refuses any help unless she asks and refuses to consider a poa. says she will take care of herself. hopefully after seeing neurologist he can have a serious talk with her.
vegaslady Mar 2022
Your doctor will provide a diagnosis but to a layman it sounds like dementia of one sort or another. Her prognosis may be determined by the specific type. Ask for all the info you can get from the doctor. Then look for a relevant support group for you. Get all the legal paperwork in order for her. Look up videos by Teepa Snow. Ask for a referral to a social worker or case manager to help you make plans for the future. If it is dementia it does not get better.

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