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‎”If Alzheimer’s were a country, it would be the 18th largest economy based on GDP,” said Daisy Acosta, the chair of ADI, describing Alzheimer’s as “the single most important health and social crisis of the 21st century.”


In April 2011, new criteria was announced for diagnosing Alzheimers:

The first stage is pre-symptomatic – only biomarkers or changes in the brain indicate the mind-robbing disease is at work. The second stage would involve mild cognitive impairment – but short of third stage: Full-blown Alzheimer’s.


This is my first post about a journey I never dreamed I would be on.  It has been four years since it started.   It feels like a lifetime since I jumped on board.  Two years ago he received his first diagnosis of Early Stage Dementia, probably Alzheimers.   Six months later in follow-up he received a second diagnosis which simply added Alzheimer’s vs Vascular type.   A few months later we decided to go to the Mayo Clinic for a second opinion.  Denial is so great.  At that time he was diagnosed with Mild Cognitive Impairment, a condition that usually progresses into Alzheimers.  And then, more recently his primary care physician did the mini mental status exam in his office and concurred with Mayo that he has Mild Cognitive Impairment.  (I ask myself why this was so necessary … did he not believe the “experts?”)

I hope that by sharing my experience, it will help others on their respective  journeys.  Perhaps you will listen more to your instincts, be more proactive, realize the doctors do NOT know it all — unless they personally live with a loved one with Dementia. Hopefully it will be part of your “education” which will arm you with questions for your doctors … a way of filtering out those who know what they are talking about and those that pretend they know.

One thing is for sure, and that is you have to start somewhere with a doctor.  My loved one’s doctor would say to him, “Oh, I forget where I park my car, too.”  Or, “Well, you’re getting older, you know, so lapses in memory go with the territory.”   Ditto friends and family. Everyone wanted to discount the fact that something was terribly wrong. Since I’d already been researching and reading and educating myself, I knew this doctor was NOT the right doctor to be seeing for what I was suspecting was happening. As long as he heard others discounting it, he also discounted it, and when I would point something out, he would get upset with me, tell me I was lying, tricking him, trying to make him look bad.

People in their 30s and even younger have been diagnosed with Early Onset Alzheimer Disease. Old age increases the probability for Dementia, but sadly there are more and more people who are young who are being diagnosed. Imagine how long they go before finding the right doctor … who can give them the proper diagnosis.

If I’ve learned one thing it is that all doctors are not created equal. Some graduate at the top of their class, others skim by at the bottom. Some are very good in one area and not knowledgeable in another. The doctors do NOT know it all.  More, they can say the wrong thing, giving hope to the patient when there is none.  That’s disastrous when you are dealing with a patient who doesn’t see anything wrong with his behavior, whose area of the brain affecting cognitive ability is damaged.  They can say things that make you, the caregiver, feel like you’ve blown things way out of proportion.  The patient clings to that and says, “See? I told you there was nothing wrong.  You are the crazy one.  YOU should see a doctor.  There’s nothing wrong with me.” I know. I have heard that statement many times.

Even the best of doctors don’t live with my loved one 24/7.  They only see him when he’s able to put up a good front, puts on his charming act, tells jokes, and acts like he is understanding what is going on. For that moment he probably does. But they don’t see him the following day when he doesn’t remember the visit at all.  The doctor isn’t around when my loved one asks me a dozen times a day what day it is.  Or when daily he misplaces his car keys. And how he manages to lose the guest ticket when we’ve been out to eat between the time the server places it on the table and he gets to the cashier.  The doctor doesn’t see the subtle changes.  How his startle reflex is so strong that on occasion when I’ve reached out gently to get his attention I’ve ended up with a fist in my face. He doesn’t see the anger outbursts tainted with obscenities and hurtful words and actions. And more.

If I had been smarter, I would have joined a support group much sooner than I did.  (Denial.)There are many groups online — and I will list those that I’ve had experience with on the right side of this page.  I plan to continue to add links which I find educational and informative, as well.   So check the right side frequently for newly added material. There is also a companion page to this one which will have almost entirely links related to all stages and forms of Dementia. Just click on “Links Galore.”

I tried a community support group, but it wasn’t a good fit for me.  There was only one other person, and her loved one was into an advanced stage, and … it met only once-a-month. With online support I have access 24/7 with people who have loved ones in all stages, who’ve had myriad experiences and who live all over the world.  A support group literally saved my life.  

If you are having ANY suspicions right now that your loved one may have symptoms of dementia, join a group!!!!!!

I’ve so much to share I don’t know where to start — except from the beginning, so my next post will start a chronology of events which lead to this blog.

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4 responses »

  1. I am happy to be the first to post a comment. I stand behind you on your decline. I hope this helps you, putting your words down. It will be interesting and thoughtful. Thank you for doing this, I know all to well what it takes….

    Reply
    • Rick, I’m honored. Thanks for your post! Although it is not me who is (at least so far) on the slow decline, I’m sure experiencing it first-hand with my loved one. I love to write, used to make web pages, miss that, and so a blog about something I’m living right now sounded like the ideal way to promote awareness. Thank YOU for all you are doing!!!!! Without your influence, this blog would not exist, I assure you. xo

      Reply
  2. Annabelle Grainger

    How wonderful that you are taking time to post. My husband was first diagnosed in 2001 so we are now 10 years into this devastating journey. I recently placed him in a care facility and he is having problems adjusting. We have changed his meds. and hope that will help. I’ll look forward to your next post.

    Reply
    • Annabelle, it’s been a long journey for you. I’m sure the decision to place him was a difficult one, but I applaud you for knowing that it was something that needed to be done. I hope you are able to pamper yourself, rest, get involved once again with family and friends — and do things you were unable to do while caring for your beloved husband at home. I’m sure it pains you to see him having adjustment problems, but i’m sure everyone is telling you it’s only a matter of time and he will accept his new surroundings. Now you know he is safe and secure and getting the care you simply could no longer give to him. You will make the most of your visits, I’m sure, and that is something you have to look forward to. God bless you, Annabelle. Sending warm wishes your way.

      Reply

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