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Early onset symptoms-don't know what to do
MistyPugs
Posted: Friday, February 9, 2018 12:19 AM
Joined: 2/8/2018
Posts: 2


Ive noticed for a few years now my father becoming more explosive with anger, shorter attention spans, losing track of his tools (I have to manage them now), forgetting how to write words in his native language, blurring his sentences together, not remembering appointments even after reminding him several times, depression that leads to spoken thoughts of suicide, increased concern for my well being in a controlling and/or paranoid way, constant fear of people watching him in the safety of his home(duct taping every computer camera, refusing to watch videos after a certain time, fear of people seeing us through our closed curtains at night), and VERY erratic driving. I looked at the 10 signs of dementia checklist and he fit all of them easily, which is why I'm concerned he may have early onset (he is 57). I'm also concerned for the well being of my pets, a pug and an indoor outdoor cat, since he threatens to throw them out of the house and sometimes spanks them with newspaper if he is feeling agitated by their presence. My cat has become skittish when he is around since he has chased my cat around the house yelling for no reason. 

He has also had times where hes said "I should just quit my job and drive to California and live there" and "I don't know why I married your mom I shouldn't have done that" and "do you have a mental problem? Why can't you just close the door?" (He hates the bathroom door being open but this time he left it open without realizing it and didn't believe it was him instead of me.) Has anyone else experienced these things with early onset? 

 

Ive brought these issues up to numerous neurologists and Neuro psych doctors before in written lists and they have dismissed all my concerns. They said it was just a language barrier but that wouldn't explain the anger outbursts, depression, and forgetfulness.

Please help!


His Daughter
Posted: Friday, February 9, 2018 12:49 AM
Joined: 6/25/2014
Posts: 2230


Misty, everything you have described certainly points to some form of dementia.  And I'm really sorry that the doctors you have spoken to haven't been any help. I'm assuming the way you wrote this information, that these doctors have not examined your father?   Has your dad been examined by anyone?  Do you have a good geriatric internist, who may be able to order some tests?  This is where I would start.  This early part is always the hardest.  The parent thinks they are fine, but children often know they need help.  

I'm going to include a page that I wrote, in hopes that other children will know what to look for.  Hope this helps, and apologize I had some difficulty with my copy and paste.  Some of the lines moved a bit.  But from your description, your father seems to fit every item on this top ten list.    

              YOUR LOVED ONE IS NOT FAKING OR HIDING 

           The top ten early warning signs of Alzheimer’s disease

  1. Memory loss that disrupts daily life     One of the most common signs of Alzheimer’s is memory loss.  They have difficulty with new information, will forget dates and events, ask the same questions over and over, and will increasingly rely on memory aids such as notes or family members for things they used to handle on their own.

         (My dad was frequently repeating himself, and asking me to call and remind him about the family Sunday lunch.)

  1. Challenges in planning or solving problems    They often have difficulty concentrating, and it takes much longer to do things than it did before.  They may have problems following a plan, working with numbers, following a recipe, or keeping track of monthly bills.

        (My prime example was his property tax protests that he asked me to handle. In the past, this would have been easy for my dad.)          

  1. Difficulty completing familiar tasks at home, work or at leisure  People with Alzheimer’s often find it hard to complete daily tasks.  They may have difficulty driving to familiar locations, managing a budget, or remembering the rules of a favorite game.  This is why you see them unwilling to do things that they always enjoyed in the past.

           (This is why he stopped reading, wanting to play cards, and why he didn’t take his keyboard to Florida in 2004.)

  1. Confusion with time or place  They will lose track of dates, seasons, and time.  They have trouble understanding something if is not happening immediately.  Sometimes they forget where they are or how they got there. 

           (I had to remind dad about my kid’s birthday, time for get togethers, and any family plans.)

  1. Trouble understanding visual images and spacial relationships  People will have difficulty with their vision.  They may have problems with reading, judging distance, and determining color or contrast.  This obviously causes problems with driving.                                        (Initially, my dad’s slowed his driving speed to a slow crawl.  He would often complain about people driving too fast. He never wanted to drive when it was dark.  As it progressed, he hit his garage door with his car.) 
  2. New problems with words in speaking or writing  People with Alzheimer’s will have trouble with vocabulary, finding the right word, or call things by the wrong name.  They will have trouble with following or joining in a conversation.  Or they may no idea how to continue with a conversation.  They often use standard answers that are easy.                                              (This was evidenced every time I saw or spoke with him.)
  1. Misplacing things and losing the ability to retrace steps   They may put things in unusual places, unable to retrace their steps to find a lost item. They may accuse others of stealing, and this may become more frequent over time.                                                                           (When asked, Dad couldn’t remember if he had something at the house, or what he might have done with it.)   
  2. .Decrease or poor judgement  They may experience changes in judgement or decision making.  For example, they have problems with dealing with money, giving larges amounts to telemarketers or friends and family when asked.  They may pay less attention to their grooming, clothing and keeping clean.                                                                                               (This was obvious by the “loans” he was giving his girlfriend.)
  1. Withdrawal from work or social activities  They will start to remove themselves from hobbies, social activities, work, projects or sports.  They will have difficulty remembering how to complete a favorite hobby, or how to follow their favorite sports team.  They also start to avoid being social because of the changes they are experiencing.                                        (This was why dad started saying he didn’t want to go to the family Christmas in Lincoln, and why he withdrew from most of his normal activities.) 
  2. Changes in mood and personality   They can become confused, suspicious, depressed, fearful, uncomfortable or anxious.  They may be easily upset at home, work, with friends, or in any situation where they are out of their comfort zone. Small things may be blown out of proportion. 

           (I first noticed this with the political conversation with my cousin Mike at a family holiday get together.)  

If you ever find yourself stopping to think about your loved ones recent behavior, it is best not to dismiss your concerns.  Initially, family often believe their loved one is faking, hiding, or just getting older.  THEY AREN’T,  these are the early warning signs of this disease process.  The sooner you can get help and identify the cause of unusual changes in behavior, the better.   You will never be able to recapture these lost years.  And the longer you postpone diagnosis, the more you have simply allowed more brain damage, financial loss, damage to important relationships, and limited their ability to participate in care decisions for the future.  

This disease process is incredibly unique.  What we need to understand, is that this is the only disease process,  where your loved one is unable to help themselves.  Initially, they may privately question changes in themselves, however parents often don’t want to bother or burden their children, they want to remain self sufficient. In addition, no one ever wants to believe they might have a brain disease. So they often just tell themselves that they are simply aging and that it’s normal to occasionally forget things. But as the disease progresses, the disease itself limits your loved ones ability to recognize a problem or to get help. (Medically called anosognosia.) Therefore, it is imperative that we become their attentive advocate.   

 


MistyPugs
Posted: Friday, February 9, 2018 1:28 AM
Joined: 2/8/2018
Posts: 2


These doctors have examined him before for a concussion about 6 years ago and hydrocephalus. We have follow ups with them as well to track the hydrocephalus. We don't have a geriatric internist. I've had specific appointments addressing my concerns with the Alzheimer's symptoms and the first appointment, which is usually just me discussing my written concerns is later followed up by another appointment with my father. He of course denies everything except for minor memory issues. When it is just me and the doctor, they seem to take me seriously but don't request any tests. When it is with my father and I, they believe his claim of minor memory issues and dismiss everything else I have told them. There have been no tests requested even from second opinions.

I'm honestly so relieved that these things I'm noticing are actually...real. Since my father has constantly claimed he was never experiencing anything abnormal besides the memory slips I guess I have started to think I was imagining things. Thank you so much for your reply I'm glad I'm not alone right now.


harshedbuzz
Posted: Friday, February 9, 2018 5:21 AM
Joined: 3/6/2017
Posts: 987


I'm sorry you are dealing with this. 

Since you have already reached out to his PCP and the neurologist who sees him because of the hydrocephalus, maybe it's time to move on. The problem is, many  neurologists are generalists or specialize in a specific issue like epilepsy or TBI and might not have the expertise in identifying dementia is a younger man especially if there are complicating factors like hydrocephalus and a language barrier. 

I would suggest seeking a university teaching hospital-based memory care clinic. The team there would most likely be able to do the complete evaluation to rule out other medical issues that can mimic dementia but might be treatable and are probably accustomed to working in the context of different languages and cultures. 

We took my dad to such a place after the local small town doctors blew us off and it has made all the difference in planning for the future. 

Good luck.
Okiedohkie
Posted: Friday, February 9, 2018 6:01 AM
Joined: 11/28/2017
Posts: 27


There are tests that doctors can give to detect dementia. These tests are a series of questions. See if the doctor can give these tests to your dad. The PCP should be able to do it. One is called the Mini Mental State Exam. There is another one which has a name I can't remember. These tests include asking questions like saying three words, and doing a few questions then asking the patient to repeat those three words again. There is also one part where the doctor wants the patient to draw a clock. The score can tell you if your dad has dementia and it gives a general idea of what level he is at. There is also a geriatric  psychiatrist that may be able to help with this and may be a good fit for your dad with his problems you mentioned. Ask your PCP to test him for dementia. If the PCP does not test him for dementia, then find another person who will such as the geriatric psychiatrist.

From what I've been told, whether it is Alzheimers or Parkinson's or Lewy bodies, the treatments are the same. Keep dad active physically and mentally. Treat all of his health problems as best as possible to keep him from getting worse. 

Consider adult day care or adult day health as a way to keep him busy, and active. If he is combative I'm not sure if adult day care may not accept him. If you can find an adult day care that has some people like the staff that speak his language that may make him feel more comfortable there. If the other clients at the center speak his language that is good too but the clients will come and go, while staff may tend to stay at the job.


harshedbuzz
Posted: Friday, February 9, 2018 8:40 AM
Joined: 3/6/2017
Posts: 987


One advantage of a large memory clinic is that they generally have access to interpreters to administer the screenings in the patient's primary language.
 
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