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aggieflyer65 Asked July 2019

I have a lot of questions about my wife's conduct and if it is related to dementia or is a mental disorder.

She will ask me the same question over and over dozens of times and if I am not present she will call me 40 to 50 times a day. She will not stay home and has a "I don't want to be alone" problem. Attention span is maybe five minutes or less, and she cannot tell time or apply time to appointments. If a care giver is supposed to be there at 9 am, she starts calling that person as soon as she gets up, like 6 am. Cannot do "wait" at all. Her only reference to time is RIGHT NOW. Is all this common or does she have other issues?

SueC1957 Jul 2019
I would have your wife checked first by her family doctor. Make a list of her unusual behaviors and give it to the nurse (on the sly) I before your wife is examined. He will probably refer her to a gerontologist or neurologist for further testing.
Much of what you describe could be related to dementia but could be a host of other problems also. She really needs to be evaluated.

Make sure she gets a urine test in the doctors office. Many times a U.T.I. (urinary tract infection) can cause strange mental symptoms.

EllerySir Jul 2019
My wife Christy, in 2006, began saying "huh" in the middle of my sentences. I would have to start over.
She began to mix up and make up words. Helicopter became hellimacopter. Motorcycle was motormasucker. She couldn't give her birthdate for ID.
She became a silent background, would not converse. Date, time, place, had no meaning. She was once a people lover. Then suddenly other people did not matter and she would be angry with someone for no reason. In 2010, she knew that she was broken and gave her aikido gear to the dojo, her radio equipment to the hot air balloonists, voluntarily stopped driving.

In 2011 she asked who our daughter was.

In 2013 she forgot who I am.

In 2015, she was diagnosed with a combination of Frontotemporal FTD variants.
https://www.nia.nih.gov/health/types-frontotemporal-disorders\

She is now an autistic 2 year old. Physically healthy and hyperactive.
Her brain does not interpret input and she can't comprehend language.
She is physically capable, but she has to be hand fed and hydrated.
If not redirected, she will bump into walls and fall over objects.
Her eyes work, but the brain does not interpret.
She is enraged at restraint, constraint, redirecting touch and loud voices.
I have cared for her since 2006, retired early from my career in 2013.
Christy requires 24/7 supervision.
There are no facilities capable and Alzheimer's medications not only do not work, but have adverse affect with FTD.

https://memory.ucsf.edu/treatments-stays/medications-dementia

Do not allow medications until FTD is ruled out. Christy was given Donepezil in 2014 before her diagnosis.
It further reduced her cognition and bent her over for no physical reason.
A legendary 2nd degree aikido blackbelt, she used to stand erect, aware and would glide as she walked. Now she is still stooped over.
There are no facilities that can care for her.
Family left careers and homes in other states to relocate nearby as caregivers.

From 2006 until 2014 even university doctors did not know.
It was just by chance that I was on the phone with a social worker who's husband had suffered and died with FTD.
The lady recognized Christy's whining and growling in the background and exclaimed,
"OMG! That is FTD! My husband died from that. She is miserable and afraid, you must get her help. My husband became violent and I could no longer care for him. He did not survive long in the facility,"

Once I had the term, FTD, the university doctors recognized it, but it was too late to stop the affects of the meds.

This journey has been long and intense, with more to come.
The artlcles on FTD have evolved over the years and I would assume that I am the most experienced as spouse and caregiver for 13 years.

Christy is prone to seizures as her brain is attempting to reconnect. There is no mediciation for FTD seizures, but we found something that stops the seizures, immediately.
The medicine also affords her several hours of quality life, for us also.
She can actually be a hoot, and we laugh much.

It has been 13 years and I can do this for another lifetime.

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia
lealonnie1 Jul 2019
Wow....what an incredible and intense story about Christy. You are quite a remarkable husband and care giver, kudos to you dear man

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pamzimmrrt Jul 2019
It could be dementia.. my dad at one point went out to his car 30 times in several hours to ask if it was "his car", and where were the keys? My hubs and I actually counted... I am sorry you are going through this.

Confounded Jul 2019
Some of this sounds like my husband, immediately post-stroke. If we had an appointment at a particular time, he'd try to get us both going as soon as he woke up (crack of dawn), even if the appointment was later in the afternoon. If we were separated for a few minutes, he'd phone me. (Both of these behaviors dwindled over a period of weeks.) To this day, if something's on his mind, he'll brood on it until we act on it.

Did these symptoms pop up suddenly?

It is possible to have a mini-stroke, or TIA (transient ischemic attack), and not experience symptoms at the time ... but after-effects may show up quickly after.

To confirm or eliminate this possibility, your wife will need a CT and/or MRI scan. Cognitive testing is needed, as well.

Stroke/TIA after-effects *may* fade over time. I wish I could offer guarantees, but I cannot.

I've been there, or adjacent to there ... and ... I wish you both well! Please keep us posted.

anonymous912123 Jul 2019
Hard to say, have you taken her to a neurologist to have a brain scan done? You don't mention her age, if she is not in her 70's or 80's I would suggest a complete mental workup be done.

lealonnie1 Jul 2019
Did all of this behavior come on gradually or out of the blue? Time is one issue dementia patients suffer from big time.....they seem to have no concept of or for it at all. I notice it in my 92 year old mother and have for a while before she was officially diagnosed with progressive dementia. In other words, the odd behavior doesn't just show up all of a sudden, so you definitely need to get your wife checked out right away. Sue brings up a good point about a possible UTI......sufferers can act totally whacky with one of those! But you mention "caregivers" so it seems like all of this has been ongoing.....get her evaluated asap and good luck!

cinzim281 Jul 2019
Dear aggieflyer65..Yes, your summation is absolutely correct! One of many phases of ALZ..Short term memory loss, no concept of time of day, numerous phone calls, etc..

My Mom is moderate/severe dementia..Presents with the aforementioned..Now, tells me she eats bland casserole every day(not so!🙂), nurses don’t wake her for dinner, calls me 12+ times a day..

Easier said then done BUT, pls try to give yourself respite time..I learned the hard way, this will take a toll on your health, and compromise your patience level & strength for caregiving..Hugs & prayers to you & your wife.🤗🙏🏻

Longears Jul 2019
Howdy! How the 'heck' are you? Losing the ability to keep track of time & zero attention span & no realization of the consequences of the same were some of the earliest signs DH had a problem. It took years to get anyone to believe me & get DH a thorough evaluation. He was very adept at show timing & being "with it" during dr. appts. You know something isn't right. Keep asking questions until you get the answers & treatment best for your wife. It is a hard journey. People on this site are here for you. Blessings & prayers!
shannonbrown3 Jul 2019
Hello Longears. My Mom has dementia, "probable Alzheimers". Per Neuro. I have been surprised how "with it" she can be with the medical community in general as well. Twice she has had the mini cognitive exams that show her "mildly" affected. Total BS. I have decided not to take her for any more of those appts. Waste of time and money. My mom needs a comprehensive neuro exam in order to qualify her for the extremely limited resources available in our area.
If she were "mildly affected" then she possibly would be living in her own home in stead of mine.
DesertCatlady Jul 2019
My experience only: Mom, Grandmother and Great Grandmother all had the same issues. All experienced strokes that did not affect their speech or body, but affected brain functions. It was not clear-cut, one minute they were one way, the next they were worse. All of them were able to pass many neuro tests...at first. But as things progressed, they all eventually needed memory care. Since none of them had an autopsy, it is unknown what kind of dementia, if any, played a part. Dementia is an individual disease. All my relatives mentioned were hugely narcissistic, neglectful of their children, trapped in a small town, and highly intelligent, quick thinkers, and were persecuted, stuck in early marriages to abusive men, murderers, alcoholics, etc. So, I think in my case, genetics, the environment, the times, their (lack of) choices, contributed to their having such similar symptoms. Calling 20-40 times a day. An almost coy, childlike disregard for courtesies is very much like a toddler demanding needs to be met. I always thought that once the rough edges of their personalities were sanded down, from the strokes, what was left was their childhood developmental neglect = pre-empathy behaviors, needing constant validation, impulsive, short attention span, no idea of time, how to tell it, what day it is, an almost willful glee in refusing to learn something as simple as the year "what do i care, if i need to know the year, i can ask someone" was/is the reply...I noticed these problems in my mother years and years ago, but she was so paranoid and suspicious that we were trying to "put her away" or "have her declared" and she was so incredibly secretive with money issues, her health status, by the time she was dragged out of her home, she had lost 50 lbs to a dangerous weight of 130 (most of it was skin) (after weighing 250+ her entire life, then bariatric surgery, down to 180), she had malnutrition, dehydration, a quart of pee in her bladder, and the bathroom was covered in feces, she had not showered in a month. The good news: now she is in NH. She eats three meals a day, tears around in her wheelchair, had made friends, learned some hard lessons about negative people using her, she works out at their gym (!!!), her pills are handed to her, she sleeps, they come to get her when it is time for events. The insane calling and repeating has been controlled with some medications, but mostly by the fact that she is no longer "bored". Now there is something to do and people to talk to, all the time. Very intelligent 78 yr old mother needs stimulation, but in a controlled setting...and on top of everything else, she is schizo/phrenic-affective, with both auditory and visual hallucinations. Meds have fixed her up. NH setting has fixed her up. POA is a POS and her elder lawyer is a lying jerk, but mom is safe, secure, and we can have a relationship now that is not based on me worrying myself to death and the phone ringing 40 times a day. I wish the best for you. This forum is very helpful. But the symptoms you describe are to my mind, less important to definitively diagnose than to treat them. You can see my mom isand has been diagnosed (40 years) mentally ill, prob has dementia, there are both genetic and environmental components, she has had three strokes, and had various physical issues to fix, she is indigent, on Medicaid, with a crap family, crap POA and crap lawyer...and she is doing great. Oftentimes the treatment working or not allows the diagnosis to occur. (Like "there is something wrong with me, blue, tired, sleeping"...Doc gives you Prozac and it helps, so there you are...you were "Depressed".) So IMHO work on relieving the symptoms, that is my best advice, and dont lose hope; I would never have believed my mother could possibly have recovered so well from her life, parents, experiences and medical issues to be as happy and sane as she is now.

Cloudtouch3r Jul 2019
This is a very common dementia problem.
I suggest for you to 1. Watch Teepa Snow on YouTube. She is an excellent speaker on dementia and working with dementia patients. I worship this woman and wish someone had told me about her from the beginning.
2. Read the book 36 hour day.
Dementia is not something you want to be surprised by. The symptoms can be hard to cope with. Time to read up.
Keep up your good work but make it a tad bit easier with a little research.
Now go watch Teepa.

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