RSS Feed Print
Sti
obrien4j
Posted: Sunday, November 27, 2016 1:29 PM
Joined: 11/18/2016
Posts: 451


Hello,

Could you please help me deal with all these "stupid moments" as I call them, that I've been having lately. Yesterday was such a bad day, what I could get wrong, I did. I was so totally disoriented, everyone knew that. I got to the point of saying that it would proabaly be best that I didn't speak at all. I was getting very confused, and it's very frightening,as you well know, fest realize what is Hanna. My kids grandmother died recently and had been going thru these same issues until either dementia or Alazheimers set in. By that point, she didn't realize what was happening to her. But I'm 55, there are days when I can laugh it off, do what I need t do, but days like these can really get to me. 

 It is such a horrific thing to feel like you're going crazy and just praying first, that  you're not, and then if you are actually going crazy, no one else notices. When I go back to thinking what it could be, my heart skips a beat. My hands shake as I type.I think of the word but it seems like someone else is possessing me since the letters aren't the same ones I see on the screen. 

And I am very scared.


alz+
Posted: Monday, November 28, 2016 9:16 AM
Joined: 9/12/2013
Posts: 3608


being scared is a common aspect of this.

i have forgotten if you are in process of being diagnosed or thinking some changes in your thinking MIGHT be dementia.

When i was first diagnosed i found a good counselor and went every 2 weeks for a few months. turned out most of what I wanted help with was getting along with my husband and how to deal with my family which was tightening the screws.

My personal experience has been once I set a course to be content with whatever was coming the fear factor became less an issue.

There seem to be basics to living without too much fear:

an easy place to live

someone to listen (this online group saved me many times, still does)

having affairs in order

getting out in nature

learning what you can still do

giving up what is unsafe

appreciation and gratitude in what is

forming a goal of how you would be most proud of handling what comes

love and courage



obrien4j
Posted: Tuesday, November 29, 2016 6:32 PM
Joined: 11/18/2016
Posts: 451


I was diagnosed or at least that's what I think. The dr was going on about retirement,disability,etc. I asked if she thought I should consider early retirement and she said I should. She also made a statement about , "You got what you got" so when I said, " What do I have?" She said , "I think you have a form of dementia, we just need to see to what degree". That sounds like a diagnosis to me, right. I had done a whole work up for MS last year, so she had the MRI, psych test!etc. everything was normal, but she read the psych report again, the middle page with the actual stats is missing, SHOCKER, and said that she wanted new tests and to have my wife at the next appt so we can discuss "options".So it doesn't look good.

I like your attitude, choosing to be happy thru this. Granted, I don't have a definite Alzheimer's diagnosis, but I do know that in 8 years that I have been complaining about my memory, now I am very worried. It's way beyond forgetting my keys, it's reasoning, understanding, disorientation, the whole 9 yards. So call it what you will, I also have Lyme Disease, and neither one has a cure. At least there is something for memory impairment that is promising to slow things down. With Lyme, I get nothing. 

 


Mimi S.
Posted: Tuesday, November 29, 2016 6:50 PM
Joined: 11/29/2011
Posts: 7027


Hi, can't remember, Jean?  O'Brien,

Easy to say, but had to do.  Try to relax until testing is complete.

I have a special place in hell for doctors who give diagnosis before all facts are in.

Have you read, from your library: The Alzheimer's Action Plan by Doraiswamy and Gwyther of Duke Univ.  First part deals with the diagnostic procedure everyone should have.

And if your worst fears are confirmed, the relief you feel is something many of us have experienced.  We knew something was wrong and it's finally a relief to have a name for it.

If it happens, you'll read, read and read.  Get in touch with your local Alz. Chapter.
Get involved in Best Practices.

 Become proactive and stay with us.  At first, you get the help and then you help others!


obrien4j
Posted: Tuesday, November 29, 2016 9:10 PM
Joined: 11/18/2016
Posts: 451


Thanks Mimi, I always appreciate your advice. I like that about being helped, then helping. The dr did have last yrs testing so based on that, she made her diagnosis along with my present symptoms. The new tests, according to her, confirm to what degree. 

I thought long and hard about what you said about the kids and you are right, they deserve the best teacher they can get and I'm not there right now. Monday was bad, I was short and in your face, very unlike me. Last night I broke days wn crying, couldn't sleep and at 3 am called in for a sub, again unlike me. Soooo, having said that, I took your advice and looked into an early medical retirement, disability , the whole thing. I was worried financially but I think I'll be ok but I know I don't want to leave the kids mid year. My wife suggested getting something like Xanax to take the edge off while the meds settle and my anxiety lowers a bit. I would finish the semester and then go on disability in January. Your thoughts, Mimi.


Mimi S.
Posted: Tuesday, November 29, 2016 10:52 PM
Joined: 11/29/2011
Posts: 7027


Hi again, O'Brien. I saw your post before I went to bed and was going to wait until morning to answer.

But I'm tossing and turning and going over what I hope I remember to say. So here I am. Then maybe sleep will come.

From what you have written I suspect we are both passionate, dedicated teachers.  I never took a "metal health" day and I gather you don't.  So, being a long time teacher, if you can accumulate days, you have plenty.

How about using those for December?  Depending on your relationship with your Principal, you can say something like:

I have some health issues that I'm being tested for.  I am not comfortable discussing the nature of such just yet.  I am not able to do my usual job in the classroom and so need to take the month of December off.

If you are comfortable and they get a long term sub for you, do encourage the sub to call you. You can probably handle that. If it turns out you can't, just say so.

That will give you time to discuss with principal (always ways my best advocate) and HR what the best next course of action is. My District was fantastic; hope yours is also.

I know you'd like to finish the year, but think what's best for the kids.

Re calming meds, discuss with doc. I think I take Norotrytolin, not as strong as what your wife suggested.  The least strong that will do the job is your aim.

And no, you won't be as well off, financially, but I'm glad you see that you can make it.  Hey, no more out of pocket expenses for school!

Good luck!!!!

 


obrien4j
Posted: Wednesday, November 30, 2016 2:18 PM
Joined: 11/18/2016
Posts: 451


Thank you Mimi, I'm sorry you got up out of bed to answer me. You give very sound advice but once I make my decision, there's no going back. I work in a great district but I don't think they'll be able to work with me, just because of the nature of my job. My principal is my friend so it would be hard to not disclose the real reason for taking time off. I also would hate to leave her in a bind for a teacher mid year- I've been in the admin side of it and it's not fun. Then again, had my request been fulfilled for this year, I think I would have been able to handle things better. I have 3 full classes of 30 kids, as you know, I need to be on my game and when I think I am, I'm even not. Besides that, I am the ESL coordinator so there's lots of other stuff I have to do as well. I never really understood the word " overwhelmed" until now, it takes on a whole new meaning.

So in the meantime, I called our state retirement system and got a disability retirement packet from them and my private insurance company, although I'm confused as to how long I could be on disability. I can't alert anyone in HR until I have all my ducks in a row. I work in a very small district and word would spread like wildfire. The outcome will decide the next step,although I don't foresee working next year. BTW, I do have over 50 sick days and that's why I decided the other day that enough is enough, if I cannot handle it, for whatever reason, I'll stay home. That's what's best for both the kids and I. 

 

 


Mimi S.
Posted: Wednesday, November 30, 2016 3:19 PM
Joined: 11/29/2011
Posts: 7027


Getting up was my choice,

Sounds like you've made your decision a d they sound good 

I hope you do disclose as you leave. 

It will help educate so many. Iris and I, due to our own experiences , differ on to tell or not.  My experience has been positive 


Mimi S.
Posted: Wednesday, November 30, 2016 4:01 PM
Joined: 11/29/2011
Posts: 7027


Sounds right to me. 

Do think about disclosing as you finish

Folks need educating.

I've had success with such disclosing, othrrohave not. 


obrien4j
Posted: Wednesday, November 30, 2016 4:05 PM
Joined: 11/18/2016
Posts: 451


I will disclose Mimi, once I've got a definite diagnosis and have made a decision.
Mimi S.
Posted: Wednesday, November 30, 2016 4:18 PM
Joined: 11/29/2011
Posts: 7027


Great

Have a good evening


alz+
Posted: Wednesday, November 30, 2016 5:29 PM
Joined: 9/12/2013
Posts: 3608


that was fantastic!

wow. this is what using the message board means! Mimi has been helping people for YEARS, like Michael and Iris and many more who are now gone.

Does not matter what time it is, you can come here and someone will be willing to help you.

I am so honored to be among all of you.


Mimi S.
Posted: Wednesday, November 30, 2016 6:52 PM
Joined: 11/29/2011
Posts: 7027


ALZ+ 

Truth:

M getting up to post was so I would stop mulling over my answer and get to sleep.  Wrote it but sleep still took awhile.

But we are a small but loyal group.


Mimi S.
Posted: Wednesday, November 30, 2016 6:53 PM
Joined: 11/29/2011
Posts: 7027


ALZ+

Truth:

M getting up to post was so I would stop mulling over my answer and get to sleep.  Wrote it but sleep still took awhile.

But we are a small but loyal group.


Iris L.
Posted: Wednesday, November 30, 2016 7:19 PM
Joined: 12/15/2011
Posts: 18513


Obrien, you could be on short term disability until it runs out, then you would transition to long term disability.  The length of your short term disability would depend upon your employer and how much time you have accrued.  Long term disability lasts until the disability is no longer an issue, or until your usual retirement age.


YOAD patients are eligible for Compassionate Allowance which will fast track their application for SSDI.

http://www.alz.org/living_with_alzheimers_social_security_disability.asp 

 

If you don't believe you can function at all on your job, then take disability.  But if you think you can still work, then review the work accommodations that may help you.  

Here is one resource that may give you more information:

http://askjan.org/media/cogn.htm


 

Iris L.
bjrj
Posted: Thursday, December 1, 2016 2:16 PM
Joined: 7/17/2014
Posts: 14


When we have these moments, I had one at the store where I left without paying at the self check out. The cashier came out the door yell at me that I didn't pay. Red faced I came back in the store and paid. Afterwards I approached the cashier that had reminded me about paying quietly telling him I was very sorry and that I have Alzheimer’s and sometimes things happen that I can't control. He just gave me that look, the one that says year right. I have concidered having cards made up saying Sorry Alzheimer's Diease, so if something happens I can play the Alzheimer’s Card and walk away.
Mimi S.
Posted: Thursday, December 1, 2016 6:56 PM
Joined: 11/29/2011
Posts: 7027


Too many folks joke about AD

Let us know what happens when you pass someone the card.

 Caregivers use them with success.

The general public has far to go to understand the implications of Early Stage.. 

Throw in Early Onset and they are unbelievingly 


Iris L.
Posted: Thursday, December 1, 2016 7:25 PM
Joined: 12/15/2011
Posts: 18513


I am of the opposite opinion. 

What is the desired response to handing someone a card?  Caregivers may hand a card regarding their LO with dementia to elicit patience and understanding from the public, who might be inconvenienced or otherwise affected by the PWD.  Would the desire be the same? "Be patient with me, because I have dementia."   


I don't want the public to know too much about me since I am still out and about in the world. Calling attention in public to having dementia, to me, is a claim of being vulnerable and an invitation to being taken advantage of.  I can't take that risk.  I want always to present an impression that I am capable and able to handle myself in public.  Disclosing to friends and family is another matter, not what we are discussing here.


My opinion reflects my surroundings.  I live in the city, where appearing vulnerable is not a good idea.  Perhaps in a very small town or rural area this might not be an issue.  People need to take their environment into consideration before disclosing too much about oneself.


Iris L.


Joy40
Posted: Thursday, December 1, 2016 7:54 PM
Joined: 11/23/2016
Posts: 21


Hi. In my district we have within HR an employees relations department. They handle all the sick leave requests. I called the department and asked questions about taking leave. I didn't have to give my name. Then I called my doctor's office to get the necessary letter from him to take leave. I was told all information is kept within the employees relations office. If you give your information to HR it should not leave their office. 

We also have a sick bank.  We can request days from the sick bank once we run out of sick dayys.  Everyone is not approved though.  Does your district have a sick bank? 

I work with small groups of students. Even this is a challenge for me. I struggle to prepare the lessons.  I can't image teaching a class.  Preparing for the classes. I wouldn't be able to do it. 

You have to take care of yourself.  That is a lot of stress. It will only make you feel worse.  Your principal will figure it out. 


Mimi S.
Posted: Thursday, December 1, 2016 8:02 PM
Joined: 11/29/2011
Posts: 7027


Iris, I do respect your opinion and I know it is based on prior bad expulsion. 

Guess this is one of the few things we'll have to agree to disagree on.

Since BJRJ is a member of the Early Stage Advisory Group, she has already agreed to be so identified.

Joy. welcome to our group.. So glad you found us.  Tell us more about yourself.

Jean,  how was today?


Joy40
Posted: Thursday, December 1, 2016 9:26 PM
Joined: 11/23/2016
Posts: 21


Mimi, I am 59 years old. What I really enjoy is walking outside in the warm sunlight.  I was so happy walking this summer.  I don't like cold weather.  Winter is depressing.  I did bundle up after work today and took a walk.  I felt good. It was warmer than I thought outside. I don't like to feel cold.  I usually go to the YMCA more in the winter.  I just don't want to go to the YMCA.  I don't want to be closed in. 

What I love about this site is that we understand each other.  I have spent time reading old post  I could see myself in a lot of them.  The post are very helpful. 

I have a few friends.  I have only told one of them about my MCI.  She said we all have memory problems at our age.  I tried to explain the difference to her but she doesn't get it.  I don't really care to mention my condition to any other friends.  

Well its past my bedtime.  Goodnight.  

Thanks to all for sharing!

 


Mimi S.
Posted: Thursday, December 1, 2016 9:41 PM
Joined: 11/29/2011
Posts: 7027


Joy Thanks for sharing.  You do know the stats of M cI progressing are 50%.

Do get involved in what we call Best Practices. 

I once stopped such a reply but you're younger..

Knowing she had a young grandchild, I looked her full in the eye and asked: Do you forget your grandcild's name?

 The look of horror on her face told me I' hit home. 

Usually all you can say is: there's a big difference.


obrien4j
Posted: Thursday, December 1, 2016 11:54 PM
Joined: 11/18/2016
Posts: 451


Hi all, today was pretty good even though I had a horrible night. I have a hard time sleeping with the meds, I'm up way past my bedtime! My lesson plans aren't quite what they used to be but I did manage to put together a great project for the kids but of course, time got the best of us. I knew it was up to me to make today work, even though a lot is out of my control and stuff happens everyday, I really have to make a concerted effort to do the very best I can for the kids sake. I don't want to go out bad, if you get what I mean. I've worked very hard to earn the reputation i have and I don't want to mess that up . I did call the disability insurance today but the lady couldn't tell me how long it goesfor. I understood it was long term but the Max amount is 36 months. I would really have to tighten my belt if I were to retire now. I'd probably lose half my salary. 

Joy, what I would give to work with small groups. Having 30 middle schoolers and a coordinator job also is too overwhelming for me now. Unfortunately though, my district is so small that word would spread like wildfire and I would be encouraged to take a leave on their terms, not mine.but I'm trying to find out about all these things without HR getting involved.

I agree with ya'll, Alzheimer's or any memory loss has such a stigma and few really understand. I stay close to home with family mainly, and my kids aren't really aware of the severity of the situation. I was a single mother in Mexico for 20 years and my kids only source of strength. Their father has not been v tu active and present in my kids life. I have become so strong because of my kids and it's hard to imagine how things could pan out in the future, I know I'm jumping the gun and today I don't feel like being depressed, but  like Iris mentioned, it's like you work your whole life to become a certain person and you just want to continue being that person forever. I want my kids to see me as a strong willed, kick ass mother, especially my daughter. I have had many health issues over the course of my life and have pushed they them, with my kids by my side. I've gotten tough as nails, strong to withstand lots of pain, not as a Martyr, nor hiding my feelings, but because I never wanted my kids to see their only family knocked down. I have literally been the only constant in their lives and even though they're grown now, they're still my kids.  In the big scope of things, I really don't care what anybody but the people I love think about me. I had certain expectations for my family, the one I ne Dr had, not the one I gave my kids growing u p, they now have 2 loving parents, maybe not their mother and father but two people who would give their lives for them. I don't want this rock I've become to my kids all these years to just crumble before their eyes, little by little, to the point that thet forget who I was. I know I can't be alone here. Anyway, not getting depressed, the weekend is upon us, 2 days no school, did I just say that out loud, and closer to Christmas break! Goodnight, friends.


Mimi S.
Posted: Friday, December 2, 2016 10:19 AM
Joined: 11/29/2011
Posts: 7027


Wow Jean

Full time classroom teacher plus part time Admin?  Too much 

Sounds like you are back at work  

You are one strong lady!

Do you live by yourself?  I do.

Do call the help line and get information on options available to PWD

1-800-272-3900. 

Do call doc about sleeping.But with all the decisions on your mind it' no surprise.

I hope you have shared with your kids.  Mine are my best support 


obrien4j
Posted: Friday, December 2, 2016 11:16 AM
Joined: 11/18/2016
Posts: 451


Well I'm the campus ESL coordinator so it has many demands, as you know. I have my psych testing on Monday, crazy as it sounds I hope something comes out that can demystify this state of confusion I'm living. Like it was said before, I'm waiting for that sense of relief by being able to put a name on it. Then I'll know ( sort of where to go from here. Then again, since there's Lyme Disease in the mix, who knows if there will ever be a clear diagnosis. I know it sounds crazy, but when I was diagnosed with Lyme, you think I won the lottery because I went shopping,  I was so happy, better stated, relieved, that I wasn't losing my mind like some health "professsionals" implied. Oh and then there's the good 'ole depression diagnosis...yeah, you're damn right, I'm depressed, cause I'm losing my mind! A contradiction, I think not!  Actually, I'm not depressed at all, not today, more taking things as they come and I know it's ok for my emotions to fluctuate and I will enjoy today for whatever it's worth. My motto is  "It is what it is", not a resignation but rather a true acceptance of what is. I'm too old to fight, but far too young to just sit around  and give into this, whatever "this" is. I'm doing what I think I need to do with ya'lls advice, which has really helped me put things in perspective. We're all living on borrowed time, we just got a heads up from the man above to get ourselves together and to live each day as if it were our last. I will try to plan for tomorrow but in the end, who knows in any of our cases if our wishes will be fulfilled. I hope so, but we have to entrust that our loved ones will do what they think is best for us. 

Mimi, I'll talk to my kids when the moment is right. My follow up with the neurologist is Dec. 27th, good thing, after Christmas.

Have a Happy Friday everyone!


Iris L.
Posted: Friday, December 2, 2016 1:03 PM
Joined: 12/15/2011
Posts: 18513


Obrien, we can't totally trust that our family members will do what's best.  They just don't know.  That's why we have to take the initiative, while we can, to decide what we want for ourselves, make our plans, and communicate such decisions with our family.  It's a tall order, but we must, if we want to live a certain way.  No one knows the future, but we can plan as best we can.


Iris L.


obrien4j
Posted: Friday, December 2, 2016 1:26 PM
Joined: 11/18/2016
Posts: 451


I totally agree Iris, and that's why I'm being proactive while my wife chooses to wait for a definite diagnosis. The label is not going to change the condition. In the end, we hope they will follow our wishes, but we may never know, will we?
Mimi S.
Posted: Friday, December 2, 2016 1:34 PM
Joined: 11/29/2011
Posts: 7027


Respect your wishes!

That's why I went to a Certified Elder Law Attorney and both legal and medical are there.

I have six kids.  I received my diagnosis in Early December and shared with a friend.  Half of kids were here for Chry Holidays.

So after the big day, I gathered the adults and shared.

I immediately called the others.

I am glad I did but then I have great kids.  Depending on family dynamics others may feel differently.


The_Sun_Still_Rises
Posted: Sunday, December 4, 2016 10:30 AM
Joined: 7/24/2015
Posts: 3020


They say, and it sure seems true for me, that stress and fear make one 1000x worse.  And, like you point out, it can feed itself...the worse you do, the more you fear, the worse you are.

Therefore, many of us, employ the BEST PRACTICE of monitoring and reducing stress in our lives in order give our selves chance function at our best.

Change in ones life, generally throws us all off for a while.  In time you realize that it just takes longer for you recover from change than it used do.

Sorry about the death in you family.

<3