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obrien4j
Posted: Wednesday, January 4, 2017 9:40 AM
Joined: 11/18/2016
Posts: 451


Good morning everyone- if you've followed my saga of,"As The World Turns...Upside-Down", I did go ahead and tell my boss I have dementia. I did not consult a lawyer (sorry, Michael!) or do any prior research, I only consulted my heart, my gut and oh...my wife. No one knows what's "best" to do, not even the person affected. Once the words pass the lips, you are not responsible for the other person's reactions. I knew going in, what could happen and i had faced it beforehand. First off, HYPPA or however you write it, has to protect me in some way. Second, there's nothing written.If we want to get real ugly- it's her word against mine. Now I ask the question...Do I teach in a middle school or am I IN a middle school? Anyway, I believe in the goodness of people. My boss and I go way back and even though she has to think about the kids- her clients- I was not very explicit about my deficiencies- I was not stupid. There is absolutely not one teeny tiny stain on my record that would merit more surveillance (sorry, Iris!) I am one of the pillars of that school, and yes, I will be hard to replace. And I am not being cocky. She was very supportive, telling me it's my call as to how long I want to stay. She said that she will support me with any and all of my duties. And I know she is being truthful. We are cut from the same cloth. I am brutally honest with her, always have been.

As far as the kids are concerned- and I think it was Julie and Mimi and Sun and forgive me for forgetting other names, I have dementia!! HAHA, I can use this shit to my advantage!! I AM doing my BEST and you know what, my BEST ain't all that bad. I am probably doing way better than many of my colleagues and I have friggen dementia. My heart and soul is in that school- I love those kids-especially my Mexican ones, they need me- not my entitled white ones. I make a  big connection with my students- I don't just teach them. I told my pricnipal that I need to be an advocate for kids- I need to fight for someone becuae I do it so good.

Anyway, I have 55 sick days that she suggested I take toward the end of the year-after spring break. I will be done with major testing and she agrees that giving them back to the state since they don't pay them out, would be foolish. Then again, I think that my brain is functioning fairly well- not maybe according to those stupid tests, but according to my own standards, and I have a lot to offer. I know in my heart, that I don't have the same patience with kids as I did, let's see, in June- that's how fast this shit is moving! I know I am apathetic towards work and that's not good. I am confident in my skills- thank God, I've been doing this for years so that I'm on auto-pilot a lot. I know that teaching is very stressful- whether you've got small groups or a full load. There are not many accomodations that would alleviate some of the stress without administration getting wind of this. As someone said- what would the parents and students say if they knew? THEY will encourage me to leave, not my principal. She has my back- I know it. I agree not to tell anyone else thougb- that will alter their perception of me.

My goal is to continue to get full salary until August- I don't think I'll be able to continue in any facet of my school-it's all stressful and I do believe that stress will only bury me sooner. I may/or may not leave after spring break but I don't want to jeopardize what is left of this year. Taking that into account, I know my friend understands that and unless I give her reason to doubt my work ethic and all, she's confident about my skills.

I do need to do something- I need to have a fight in life that excites and motivates me. All of this "stay at home" kumbaya crap is all good but there's only so many drawers and cabinets I can clean. There's only so many walls I can repaint- I need a purpose. There's an elementary school near my house, in walking distance, that I plan on volunteering at.I don't want o sub since that will put stress on me- being a former teacher and all, I will walk in trying to make that class my own! I need to do things I enjoy- I want to learn to play the cello- I think it's so deep and sexy- call me crazy and nothing to do with the seating!! Do you think i can learn to play it or am I done learning stuff? I know it sounds stupid but if i can't retain much, how will i learn something new??

Anyway, so much to learn, so much to live....... Thank you all for your support, you're great people. Have a great day!

 


BillBRNC
Posted: Wednesday, January 4, 2017 10:03 AM
Joined: 12/2/2015
Posts: 1018


OB, I sure things will work out with the employment stuff. I would recommend talking with an Eldercare Attorney at least about how to max your school system's retirement/disability with Social Security Disability. Same for Medicare and your system's medical benefit program. But you have time to do this, but I would certainly do it, along with Wills, POAs, and such.

As for the cello, there's nothing quite as satisfying as playing music on just about anything. I would say this, a cello is a fretless instrument, which means it is much more difficult to learn to play than say a guitar or other instrument that has frets. Also, you might want to check around and see what kind of loosely organized groups of folks play (or jam) in your area and what type of music is being played. There is nothing as enjoyable as jamming with some other folks who are no better or worse than you are now or how you will be later. Me, I play the banjo, and I didn't start until after my symptoms started several years ago. I play most anything, but I guess I mostly play what would be considered Old Time Mountain music, but I will play almost anything that is being played at a jam. It really doesn't take long to get to the point where you can hammer away at a jam, so don't be fearful of looking a fool. Everyone there looked foolish to start with, and they remember well and will encourage you and help. Good luck.


julielarson
Posted: Wednesday, January 4, 2017 10:16 AM
Joined: 9/30/2015
Posts: 1155


I too say go for it with the Cello.. Have fun and enjoy yourself while you learn.. Your plan sounds rock solid too and I am glad for you that you will get a break after winter term..
ghostdog
Posted: Wednesday, January 4, 2017 10:24 AM
Joined: 2/9/2015
Posts: 547


OB - hi, I'm a lawyer who practices employment law.  I thought I would share some general observations that might be helpful to you.  This is not intended to be legal advice specific to any person, your situation, your state.

I tell my clients who have ongoing employment concerns to keep a contemporary record/diary of their employment interactions like the conversation you had with your boss.  This is not a diary in the sense of recording all your various concerns with dementia and life, but a record of who you told what, what they might have said, anything that you experience in the employment context from peers/supervisors etc. that you believe might be a reaction to your disability or perceived disability.

Another thing that you probably know better than I already, but I have had clients from academic settings whose 12 month pay is based on about 9 months of work, in other words the 9 mo. pay is spread out over 12 month.  In some cases, those 12 mos. began in June, so what they received between June and the start of school was actually an advance of pay which they had agreed to far back at the dawn of time (their employment start) in order to get a paycheck every month -- and this triggered some difficult issues with sudden retirements.  You might want to be sure of how the pay timing works if you are not actually on the job the full 12 mos.

I agree with Bill that now is a very good time to talk to a knowledgeable attorney to maximize/qualify for benefits both through your employment and the social security system and get other documents in order.  A short consult with an employment attorney specifically might also be helpful so that you fully understand what your rights as a person with a disability/perceived to have a disability might be under employment laws.

I hope your employment situation works out and that your boss remains helpful and understanding.


obrien4j
Posted: Wednesday, January 4, 2017 10:57 AM
Joined: 11/18/2016
Posts: 451


Thanks Ghostdog- I REALLY  appreciate your advice- that diary is a great idea. As much as I can appreciate an employement attorney, I don't have the money to see both an elder law attorney and an employment one. What should I do?
obrien4j
Posted: Wednesday, January 4, 2017 10:58 AM
Joined: 11/18/2016
Posts: 451


Thank you Bill, I always enjoy your writing. If the clock is ticking, I better fine me a cello!
dayn2nite2
Posted: Wednesday, January 4, 2017 11:31 AM
Joined: 6/20/2016
Posts: 3467


I would prepare yourself that if you make some error in judgment or lose your cool with a student one day, your boss may not be so supportive and may hang you out to dry.

Please focus on seeing what your retirement options are NOW and/or going out on short and/or long-term disability (which your boss really should have mentioned) as options.  

Just make sure you aren't placing your faith in someone who won't be able to live up to that - not because they don't want to, but because it may save their own job if they sacrifice you.
obrien4j
Posted: Wednesday, January 4, 2017 12:34 PM
Joined: 11/18/2016
Posts: 451


You're all right- I have looked at the calendar and I think I'm going to take sick leave as of my Spring Break and then go on to disability retirement. These next few months will be to get things together, as much as possible, for the next guy! I just want to be sure to get paid thru August. I don't know how to find that out without going thru HR. My district is very small and people talk. Any suggestions?
Michael Ellenbogen
Posted: Wednesday, January 4, 2017 1:19 PM
Joined: 11/30/2011
Posts: 4460


 As I said before you will need disability lawyer. One who specializes in SSDI. I think the lawyer here will agree. Also sometimes it foolish to think you don’t have the money because in the end it will cost you a lot more for not paying it in the first place.  He gave you all good advice as that is what the lawyer said in my book.

 


Unforgiven
Posted: Wednesday, January 4, 2017 2:12 PM
Joined: 1/28/2013
Posts: 2659


I just read this, and it seems to me that you have a golden opportunity to educate these kids by making them your learning partners.  If you forget names, it can be the class responsibility to help remind you. Show them you still have things to teach them even if you may need a few reminders from them, as long as it's not shenanigans like 'reminding' you that everyone was promised an A, or something of that nature.  I think they'll be kind in the long run.
Mimi S.
Posted: Wednesday, January 4, 2017 7:05 PM
Joined: 11/29/2011
Posts: 7027


You know Unforgiven may an idea. Not sure I'd want to share the complete diagnosis, but when there is a memory slip,  you might, instead of covering, ask the kids to help you remember next time.

Thanks for your further explanations.  Been thinking and wondering what you did about that topic this week.


Michael Ellenbogen
Posted: Wednesday, January 4, 2017 8:15 PM
Joined: 11/30/2011
Posts: 4460


I am so sorry but these last two comments are just a bad idea. Don’t make more mistakes then you already have.
ghostdog
Posted: Wednesday, January 4, 2017 9:02 PM
Joined: 2/9/2015
Posts: 547


I apologize in advance to anyone who finds this comment insensitive or overly blunt, but involving minor students as part of accommodations for a teacher's disability or introducing a discussion of a teacher's health issues as part of a lesson plan is a complicated idea and probably ill-advised absent the support of the administration and the students' parents, and without a fully vetted game plan could jeopardize continued employment ... and yes, teachers with tenure can be fired for certain causes after certain "due process" under every contract I've seen.

 


Iris L.
Posted: Thursday, January 5, 2017 1:37 AM
Joined: 12/15/2011
Posts: 18513


I agree with Michael and ghostdog.  By the time one gets to the point of consulting a neurologist for cognitive lapses, something amiss is apparent to other people, even if they do not point it out to the PWD.  I say this because new caregiver members always post that their PWD seemed odd for some time before a diagnosis of dementia was made.  In my own history, other people made complaints about me but I had no idea what they were talking about.  But it was obvious that the higher ups had been talking about me behind my back, so probably other people were talking too.


Many PWDs complain of memory lapses and cognitive issues, but there are also problems with emotional lability and speech and communication difficulties and visual agnosia.  All of these may be going on, and may be hard to recognize at the time.


I'm not saying that your plan is not viable, obrien.  I am urging caution, and check out legalities, use accommodations, and the fewer people who know, the better.   It is a very difficult position to be in.  Protect yourself. 


Iris L.


Michael Ellenbogen
Posted: Thursday, January 5, 2017 6:13 AM
Joined: 11/30/2011
Posts: 4460


I just want to make sure I am in no way saying one should jeopardize the children. I think you know better than to do that. Its about getting a quick diagnose and put in a real exit plan in place with the financials in your favor so you can take action when you need to with minimizing the impact on you and the children. Don’t pat on yourself a that you cannot be replaced. I held more information and more dependent to the company then most people and I was fired. When I became labiality to my employees and the organization they took action. I would have done the same if I was in there position. The laws suck. I lost all my benefits and 80 of my salary for life. I only wish I had someone tell me to reach out to a lawyer at that time. It took 5 years longer to get my diagnose. The law only always you to go back two year for wrong doing.  Everyone is dispensable. The ultimate decision will not come from your friend but her boss. She will just have to carry it out. I have been there and done that against my will.

 


BillBRNC
Posted: Thursday, January 5, 2017 7:13 AM
Joined: 12/2/2015
Posts: 1018


OB, when you said you had already told your boss, I decided just to support you, and I will always support you in your quest to deal with this terrible situation. But, Michael is correct. That doesn't mean all situations the boss will screw you, but it means you never know for certain. The folks at the top of the mountain make the ultimate calls, and they only care about the dollars saved for the most part. Just be careful. A simply session with an Eldercare attorney probably won't cost more than a couple hundred dollars. If you have a local bar legal clinic, then it would be free. I would spend the money, because I would want an experienced opinion. The interplay between public service benefits and retirement and SS/Medicare/SSD can be very complex. What is the law in NC might not be even close to the same as in say California, so better safe than sorry. Mike is right about that for sure. Bill.
llee08032
Posted: Thursday, January 5, 2017 7:31 AM
Joined: 5/20/2014
Posts: 4408


Obrian wrote:

As far as the kids are concerned- and I think it was Julie and Mimi and Sun and forgive me for forgetting other names, I have dementia!! HAHA, I can use this shit to my advantage!! I AM doing my BEST and you know what, my BEST ain't all that bad. I am probably doing way better than many of my colleagues and I have friggen dementia. My heart and soul is in that school- I love those kids-especially my Mexican ones, they need me- not my entitled white ones. I make a  big connection with my students- I don't just teach them. I told my pricnipal that I need to be an advocate for kids- I need to fight for someone becuae I do it so good.

Obrian,

Your best sounds pretty good to me. I bet you are doing a better job than some of your colleagues. I feel the same way with my work. This is who you are at your core. I enjoyed reading about how you feel about your students.


obrien4j
Posted: Thursday, January 5, 2017 10:21 AM
Joined: 11/18/2016
Posts: 451


Thank you for your kind comment. We all due the best we can!
obrien4j
Posted: Thursday, January 5, 2017 11:04 AM
Joined: 11/18/2016
Posts: 451


Michael- I appreciate your advice, I really do. You have been dealing with this diagnosis longer than I have. I am just beginning to do what I need to do- hence looking for the answers and experience of all of you who have gone before me. Having said that, just because I put it out there doesn't mean  that I have to take the advice nor does it mean that the advice is necessarily correct- as you mentioned in one of your posts. I do not however, appreciate you saying that I have made a "mistake" since you do not live or know the relationships, working conditions, etc. That does not mean that you cannot give your opinion in an honest way- as you have also said- it just feels like you're "judging" by calling my actions a mistake,  which has not settled well. Again, you have the right to say whatever you want to, this is a public forum and once it's out, anyone can dive in. I get it. But by using said words in your comments sometimes comes off rather judgemental rather than supportive, which I too have a right to say. Whether you agree with me telling my boss or not is your opinion, but not everyone agrees with you nor does everyone have the same experiences at their workplace, as you did.

I greatly appreciate everyone's advice- as it has been eye-opening. I agree to look for an attorney- but Michael, again, you added the word "foolish" to not seek one out because of the money. When I am still paying off surgeries I had in May, I can't afford putting out $1200 for a lawyer, however important all of this may be. The bill collectors do not care if I have dementia- they just want their money. I will continue to look for someone cheaper-I'll look into an employment lawyer as well.

So here's the plan guys:

I do not regret telling my boss- she is a friend who I BELIEVE has my back. Sure, things could get out, but I'm not going to stress over it cause all of you are telling me that stress makes things worse. I don't regret my decision, I don't worry about my future here.  I believe I have bigger things to worry about, such as the fact that I have dementia. My days are counted and I want to make them count and that means spending them with people I love. Of course, the fewer people I tell the better, I know the implications of it all. And I would never tell my students.As far as my teaching ability- I am a kick-ass teacher who sets high expectations for herself and who feels she has not met all of them this year. Now, don't get that confused with me not fulfilling my duties- I got all that covered. people may put 2 and 2 together after I leave, but I do what I have to do and do a good job. I have worked very hard during these past 16 years and I will not go out ruining all my hard work. My decision to leave after Spring break is first off, because I want my days to count and I have quite a few sick days. If I had to choose between living the life I want to live till I die, or at least remember, or dealing with the stress of teaching middle-schoolers (which even the most experience and "normal" person gets frustraTE0  than I would prefer to leave now and enjoy that time at home- with my daughter, with my dogs, doing all the things I've always wanted to do. That's a no-brainer. I do love my job and my kids so much that I stress over leaving and feel guilty.  But my reasoning steps in and I know what I need to do that is best for everyone. Now with that comes a serious drop in money, but that's the way it is. Teaching is a very stressful job and I have multiple responsibilities which no doubt, cause more stress, and that's what I'm trying to avoid. But let me clear up any misconceptions, I am not leaving because I can't handle the job, I'm leaving because I know that as time goes on, it will become apparent and I want to end my tenure on a good note. The end of the year is particularly stressful for me, so rather than have to deal with that-counting my days but making them count- I choose to leave after Spring Break. My sick days will take me to the end of the year, then I'll go on disability (no one really knows anything about how long I'll have it and how much- not HR or the disability company), but I will ask for the benefits summary as Ghostdog recommended- thanks!

Because my sick days will take me to the end of the year, I will get my entire pay as any retiree would- and has in the past. I will officially retire on May 31st and collect my disability retirement as well as my other disability check, for however long it lasts.

You guys are great, thank you all for your advice and experience.


obrien4j
Posted: Thursday, January 5, 2017 11:05 AM
Joined: 11/18/2016
Posts: 451


Thank you Bill, for your support and advice. I really appreciate you taking the time to write.
The_Sun_Still_Rises
Posted: Thursday, January 5, 2017 11:11 AM
Joined: 7/24/2015
Posts: 3020


OMGosh I am soooooo GLAD hear about a GOOD sharing information with an employer!!!  Thanks you for sharing, a lot!  

In the end, always go with you gut...it never let you down. 

It sounds like you created a good plan of use you sick days....and then file for short term and then long term disability through you work. 

And then also figure out you life.

It so strange just how hard it is sort these details through when you have dementia (as you are now finding, I am sure)....it always surprise me that even though I know it full well and write about it often...every little thing I do shock me just HOW long it take me figure out.  It because, for me, because I can no longer hold ALL the pieces in same brain space....so I can think this aspect, or that aspect of something....but cannot think them both same time....in order really KNOW what I should do.

YES....you most definitely ARE much more you kids than numbers of history....and I am so glad you took that heart.  I had some really meaningful teachers my life and they made all the difference me. 

30 years ago when my kids were itty bitty....it was the height of AIDs coming out, and in our locale, some kid contracted it from blood transfusions....and parents would line up every morning and beem this poor girl with tomatoes.  I seriously did no want my children exposed that level hatred....so I was considering homeschooling (plus we were intellectually gifted and school was never prepared accommodate us growing up)....in any event, point being, I asked a number of our local teachers *what* they expected kids know in their respective grades.  I was so shocked when a 6th grade teacher told me point blank, that they did no even expect the kids know how read by 6th grade....and this is why they kept repeating the information.  It made the difference in me deciding homeschool for the early years, because I figured even if I did nothing....I could no imagine my kids would no be reading by 6th grade (in short, I figured I couldn't f it up).  I share that because, whether you can teach the curiculumn matters not....you real value be there love those kids. 

By the by, I was an entitled white kid....raised Christian in a predominantly Jewish community (so an outsider)....I was from a stable middle class household (although with older depression era parents who rarely spent any money, so I had homemade, handmedown, or discount store clothes further making me an outsider in our wealthy suburb).  My parents, although good, kind....were distant, cold, I had no rules or guidance of any kind.  Whatever warmth, kindness, understanding, love came from my teachers was sooooooo needed and necessary for my development...I probably needed it more than food.  Intellectually/accedemically, school was redundant, illogical, entirely a waste of time.  You really do become surrogate parents for us kids, teachers do. 

And, as a parent of 4 and now an actively involved in parenting grandparent of an autistic child.....I really think we, as a society, are NOT fulfilling our childrens developmental needs by sending them daycare and school so young and for so long....I real think we stunt and delay development in attachment, forming appropriate social bonding, understanding world through the safety net our mom's skirt....widening our circle as WE are ready.  Instead it thrust on us and we forced cope with it best we can.  So I only see teacher as surrogate parent increase with the times.

This one reason I LOVE the Waldorf Schools...they understand this and the same teacher follow the child through all the years, and they actively encourage a parent-like attachment the teacher.  Watching my granddaughter working with her occupational therapist....and the way their connection is....and her ability pull my granddaughter out her shell in the most remarkable ways....I more and more believe this. 

It amazingly hard (at least for me personally) retire....you may find so also.  But sometimes we just have rest in we have done the best we could....and we have find a way for that be enough.

<3


Michael Ellenbogen
Posted: Thursday, January 5, 2017 12:09 PM
Joined: 11/30/2011
Posts: 4460


While I would like to be your friend I also will stick by my comments. I have don’t extensive research on this matter as I wrote a book on the topic. There is so much I had learned that I only wish I had known when I needed it. As far as Lawyers there are many out there that will help at minimal cost or none at all if you ask for it.  I have many working for me doing all kind of pro bono work as they are good hearted.  I truly wish you the best of luck and hope it all comes out well for you. But time after time I have heard horror stories. As a manager who worked in the corporate world for 70,000 I saw fits hand how good people got screwed. Much of it was dictated by HR and there legal dept. not any of the managers.
Iris L.
Posted: Thursday, January 5, 2017 2:35 PM
Joined: 12/15/2011
Posts: 18513


Michael, you posted on the Spouse/Partner board about this topic.  You might want to repost it here.


https://www.alzconnected.org/discussion.aspx?g=posts&t=2147531053&page=-1



Iris L.


julielarson
Posted: Thursday, January 5, 2017 3:13 PM
Joined: 9/30/2015
Posts: 1155


I know for me when I was working as an apartment manager I knew I could not tell anyone at the main office because I knew I would be let go and with the rental market the way it was we would have had to pay a huge amount of rent if we stayed in Portland.. I kept it quiet and just left on my own and they still do not know of my struggles.. They gave me a song and dance about needing my new address for things like birthday cards and Christmas cards but it was not long that I figured out that the only reason they wanted my address now was so if there was anyway of them charging me for anything to do with the apartments or my apartment they would have a way to get in contact with me.. They are full of shit and I figured that out.. I really did not want them to be able to get in contact with me but I gave them what they wanted.. That place was my life and I gave it all but there really was not much left when I left...
Michael Ellenbogen
Posted: Thursday, January 5, 2017 3:18 PM
Joined: 11/30/2011
Posts: 4460


Thanks Iris, It seems that I aredy had it here also. Not sure how I did that.
Iris L.
Posted: Thursday, January 5, 2017 3:44 PM
Joined: 12/15/2011
Posts: 18513


I understand your point, Julie.  Nevertheless, employed PWDs are urged not to quit their jobs abruptly, because they will lose benefits.  It is a good idea to check things out first, to see what benefits you are entitled to.  


A PWD will have to have some type of income.  The PWD can apply for short term and then long term disability.  Or, the PWD may be able to continue working at the same job with work accommodations.  Or, the PWD may be able to get a new job, suitable for his or her current capabilities.  


Ghostdog posted an updated job accommodations site specifically for Alzheimer's Disease, along with other resources, on another thread.


https://www.alzconnected.org/discussion.aspx?g=posts&page=-1&t=2147531062#ekbottomfooter




This is a very sensitive topic and I am glad that we are getting good input on it.


Iris L.


The_Sun_Still_Rises
Posted: Thursday, January 5, 2017 4:03 PM
Joined: 7/24/2015
Posts: 3020


Everyone BREATHE....just breathe....in and out....BREATHE.

Dementia make many things hard us....including emotional regulation.   Some of us (I know Michael and I, I can no speak for anyone else) are active dementia rights advocates and as such know a great many people dementia and their stories....and THIS can create fear, caution, concern US.

But I have said before on here, and I will say again, FEAR (False Experiences Appearing Real) on THIS FORUM (here, with all us - the caregivers and the old time resident PWD) is like a dark, destructive sickness....and it creeps in insidiously....and takes over. 

It will destroy the happiness this place, and even us if we let it take hold here - so, please, lets not. 

Just because SOME people really are hurt by tell their employer, and just because you a caring person and want save someone that.  We have go back and remember, we are ALL RESPONSIBLE ADULTS HERE...responsible our own selves. 

You cannot save people from make dumb decisions by no giving them information (ie, you no going reduce teen pregnancy by not telling kids about birth control) - you cannot bubble wrap people.  People going do what they going do.  We can share our experience, and our knowledge, and what we know....but after that...it out of our hands. 

Everyone who walks in this place is responsible for themselves (and their reactions).

And I know everyone here have ignored my False Experiences Appearing Real thing re FEAR - but you ALL, all of us, every last one - just PROVED IT.   We were ALL afraid if he told his boss....and he did, and our fears were WRONG!  Take that in a while, let that really sink in.  FEAR is the destroyer of all things you love and value - do no put IT in between YOU and ANYONE you care about. 

Much Love Everyone Here.

<3


julielarson
Posted: Thursday, January 5, 2017 4:22 PM
Joined: 9/30/2015
Posts: 1155


I should point out that at the time I quit my job I was getting SSI and knew that I would get more money when  I did quit. It is funny about a job like I had in that it was supposed to be part time but it never shook out that way.. I was working full time all of the time and never got a day off. It was a lot of stress for what it was. I was killing myself doing that silly job and they did not care one bit at the main office.. They were not and still are not good people who took advantage of their managers and treated them with contempt while calling them family.. I am so glad I got out of there.. I am mostly sane now.. LOL!
obrien4j
Posted: Thursday, January 5, 2017 7:37 PM
Joined: 11/18/2016
Posts: 451


God, how I hate this shit, every bit of it. I know the road Michael, the one I choose to take in my life. But every once in a while, I trip up and get bitter and very angry. I try not to allow myself to go there or at least, not stay for too long, but I believe the other road I encounter is worse. That of denial.  I Know what I have, I understand the results, I get The disease....but I still can't believe it's happening to me. It's almost an out of body experience, seeing the results, hearing the words, and then realizing that they're talking about you. I keep thinking it's a fluke, questioning the drs. diagnosis. I keep thinking that it was an off day. I come back to agreeing with everything they say yet STILL not believing it. When I do come to accept it, I panic and feel a claustrophobia come over me. Like the walls are closing in on me and I cannot control them. Funny, I was just thinking how having this disease leads to a total lack of control if every facet of your life. Something that I have held near and dear to my heart. Having control of everyone and everything, such a humbling experience is dementia.
Mimi S.
Posted: Thursday, January 5, 2017 7:51 PM
Joined: 11/29/2011
Posts: 7027


Jean, at this point, and, hopefully, for some time to come you will still be in charge of your life.

All those decisions to make and the shock of the diagnosis plus other feelings you shared have put you in a whirlwind these past several weeks.  Hopefully as things get back in a routine and your principal relieves you of whatever can be, you can relax a bit.

 


julielarson
Posted: Friday, January 6, 2017 4:44 AM
Joined: 9/30/2015
Posts: 1155


obrian, I understand fully what you are saying, I get a touch of that panic and claustrophobia when I think of the little progression I had last time I was tested. I try not to think about it other than to say it happened now we move on.. You do get used to your diagnosis one day, it takes time though. I know not everyone agrees with this but I would see a therapist about all the changes you are going through.. This is hard shit and you may need help in coming to terms with it and there is no shame in that. Big hugs to you!
Mimi S.
Posted: Friday, January 6, 2017 8:16 AM
Joined: 11/29/2011
Posts: 7027


Jean ,

Several PED have been helped seeing a therapist.. It's important that you get someone knowledgeable about dementia.  When you catch a breath do make contact with the nearest office of the Alz.  Assoc.  The help line can give you the number. 1-800-272-39.  Call during business ess hours and verify that you are speaking g with the local office.  National answers after a certain number of rings p


Mimi S.
Posted: Friday, January 6, 2017 8:24 AM
Joined: 11/29/2011
Posts: 7027


Hi Jean. Several PEDs have been helped speaking with a therapist.  It is important to get one knowledgeable about dementia.    Do contact your local Aliz. Office.  The help line can give you the number.  There may be other things they can help with.
Iris L.
Posted: Friday, January 6, 2017 3:25 PM
Joined: 12/15/2011
Posts: 18513


I do not see that members here are posting out of FEAR.  No, I see that members are posting suggestions based on their own experiences.  We are not privy to all the aspects of obrien's life.  Obrien needs information and to know the possibilities that have happened to other PWDs, because she won't find out from her peers at the school.


I recall another PWD who worked as a high level chef with excellent rapport with the boss.  The next day after he disclosed his diagnosis, he was fired.  He was shocked, because he was so close to the boss.  


Whatever obrien decides, I'm sure we will be supportive.


Iris L.


alz+
Posted: Sunday, January 8, 2017 10:27 AM
Joined: 9/12/2013
Posts: 3608


OBrien -

what I hear most in your writing about your job is HOW MUCH YOU LOVE WhAT YOU ARE DOING.

Also some else used the term CLAUSTROPHOBIC which I think is the best description I have heard about the feeling of staying home and doing nothing.

In regard to leaving work you love, and friends and children in your case, consider this: by summer you might be learning to swim with the dementia instead of treading stormy waters every day.

We do learn to compensate.  One thing I suggest about the grieving over losing your current position and all the joy it brings you is that  many of us loved our work and letting it go before we are ready is worth grieving. We mattered in our jobs, we excelled. 

It has been some years now for me and I have in a sense forgotten to be remain so upset. There may be volunteer positions you can take or create for summer programs or individual assistance positions.

When people suggested a teachable moment using dementia - I think it is a great is idea - for after you close out your position. Just browse on internet for local groups in need of volunteers and imagine a new dream position. You want to keep all possible benefits and income. You also can be an advisor to other teachers in your position when the stormy waters flatten out again.

Like learning the cello, what a great idea. The whole concept of retirement was hard for me to choke down. You replace it in time and maybe you work in community garden or tutor. Just now and then consider "this is not a disaster, there is something more for me if I remain open to it."  Just think of that once in awhile and you will be sharing in a year what you invented out of this sorrow.

love and courage to all of us