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working after diagnosis
Iris L.
Posted: Saturday, March 10, 2012 12:48 AM
Joined: 12/15/2011
Posts: 16199


Has anyone successfully worked part-time after diagnosis?   

 

Has anyone gone through vocational rehabilitation? 

 

I have done quite a lot of volunteer work and academic programs after stopping my career. 

 

I know Tom worked for a while at another job.  Anyone else? 

 

Iris L. 

 

 


SteveSanJose
Posted: Saturday, March 10, 2012 1:37 PM
Joined: 1/3/2012
Posts: 189


In your statement it sounded like you think your career is work and other things that you do is not. This is not true. A lot of times people with memory issues have to change careers they can still work out of volunteer job; that is also work; or for me like I said in my previous post the busyness of my life, gives me a feeling of working. I purposely make myself as busy as a job would make me busy. This gives me the same satisfaction. Go to sleep
Iris L.
Posted: Saturday, March 10, 2012 2:35 PM
Joined: 12/15/2011
Posts: 16199


SteveSanJose wrote:
 Go to sleep

 

 

 

 

What do you mean by this?

I'm talking about working for income, not for having something to do.

 

There is a reason why I posed this question.

 

Iris L.


 


Mimi S.
Posted: Saturday, March 10, 2012 4:33 PM
Joined: 11/29/2011
Posts: 7035


Iris, A former airline pilot was the last I knew working as a cashier at a local gas station/quick stop. He said that managing the cash register was becoming problematic.
But yes, working for money, for many with young onset would be wonderful.
If such a person is currently getting cash assistance, that would need to be weighed in. What I mean is: if one quits or modifies the cash assistance and then can't do the work, what happens.
If you're speaking about yourself, now that you're back on track, your history has been slow progression, so it would certainly be worth investigating. Have you volunteered anyplace that might hire you?
And then there's the question of to tell or not.
The others that work with you would be more understanding of minor lapses. Would you get the job?


Iris L.
Posted: Saturday, March 10, 2012 7:59 PM
Joined: 12/15/2011
Posts: 16199


Mimi, I am not looking to return to work for myself.  

 

I was asking a general question.  Some of the newly diagnosed patients either have not applied for disability benefits or have been denied disability benefits.  I wondered if any dementia patients have been able to work after diagnosis.   

 

I think I remember Tom saying he left his primary work and began a different job after diagnosis.   

 

I'm wondering if it is mandatory for a dementia patient to apply for disability benefits immediately or if someone could reasonably attempt to continue to work, even if at a different work for some time. 

 

This won't apply for most dementia patients but perhaps some early onset patients might fall into this situation. 

 

Iris L. 


Be Strong 2
Posted: Saturday, March 10, 2012 8:25 PM
Joined: 12/14/2011
Posts: 1751


When we applied for SSDI for my early onset wife, it was 7 months after dx.  She was far enough gone that SS deemed her disabled 3 years earlier, not long after the first neurologist basically told me that "I was nutty, she was just fine."  

 

Not all doctors are cut out of the same mold.  Some graduate at the bottom of their class, just like any other profession.  Some are pompous asses, just like any other profession.  Others are the most competent and caring people around, just like any other profession.

 

Anyway, by the time my wife was dx at the age of 57, there was no way she could have held a job.

 

 

Bob    


Mimi S.
Posted: Sunday, March 11, 2012 10:21 AM
Joined: 11/29/2011
Posts: 7035


Which is why the word about the importance of early diagnosis must be spread. 

 

And yes, Iris, I truly believe, that if diagnosed early and aggressively treated and worked on (Best Practices), that people could work for years, and then more years with some modification.

 

The gentleman I first wrote about, could no longer pilot airplanes, but was able to earn some income for several years after diagnosis.

 

The current problem is that most patients do not know themselves or hit a brick wall in their attempts to get diagnosed!


Geegee
Posted: Sunday, March 11, 2012 12:55 PM
Joined: 11/29/2011
Posts: 514


Iris,

We currently have two members with EOAD or other dementia diagnosis or struggle that I believe continued to work.  They either stayed in their current 


position or worked part time from home.  I know remember Tracy was looking for a part time job but I can't recall her history? 


 I think that since the addition of my medication, I could work if I could be hired with the employer's knowledge of my dx going in.  I have a "ticket to work" from SSA that limits the dollar amount so my benefits aren't affected.


My concern is that my physical pain Would be my major hurdle.  Add that together and you get too much stress.  Not good.  Think I'll just stay home and work.


But I believe it can be done in some cases.





Iris L.
Posted: Sunday, March 11, 2012 1:36 PM
Joined: 12/15/2011
Posts: 16199


Thank you all who responded.  What I'm reading are reasons why a dementia patient cannot work.  My thinking is that a newly diagnosed EARLY STAGE patient, might still be able to work at the same job with reasonable accomodations or at another type of work  for the purpose of receiving income instead of having to apply for disability immediately. 

  

I'm not thinking of those of us who are already on this board, but for a new patient who may be looking for guidance. 

 

It would be very beneficial if an EARLY STAGE patient could work for one or two years more, or longer if possible.  Most employment pays better than disability payments. Of course keeping the same medical benefits would be very helpful.  There would be more time to plan for future legal and financial needs. 

 

I read of one EOAD patient on these boards who was gainfully employed at a friend's plant nursery.  Her job was caring for plants in a greenhouse, away from the public. 

 

We are reading of many patients in their late 30s, 40s and 50s being diagnosed.  It would be wonderful if they could continue employment, even if at a lower level than their usual employment.   

 

On the other hand, I may be completely mistaken.  Perhaps it is not reasonable to think that an EARLY STAGE patient could continue useful employment.  Perhaps disabilty is their only option. 

 

I'm looking for answers. 

 

Iris L. 


Iris L.
Posted: Sunday, March 11, 2012 1:47 PM
Joined: 12/15/2011
Posts: 16199


Geegee wrote:

 

 I think that since the addition of my medication, I could work if I could be hired with the employer's knowledge of my dx going in.   

 

 

 

Geegee, it is my understanding of the ADA policy that an employee does not have to disclose the nature of the disability.  What the employee has to do is describe the reasonable accomodations required in order to do the job.    

 

So you would not have to say "I have AD" but you would have to say, for example, "I need extra time to learn how to use this machine." 

 
The reasonable accomodations are for employees who CAN perform the job tasks, they just need some help doing so.  They are not for people who cannot perform the job tasks at all. 
 
Iris L.



 


 



Mimi S.
Posted: Monday, March 12, 2012 7:04 PM
Joined: 11/29/2011
Posts: 7035


Iris,
Please, don't misread me. As people are getting diagnosed earlier and earlier, it is very likely that many can  do something in the work world.

From stories I've read since being on this board is that the most common way a person with Early Onset is diagnosed is from problems getting their work performed.

I certainly hope that a good employer would want to do some accommodations. I don't know for all those RN's on board if downshifting to an LPN would have been practicable.

And my friend, the pilot, couldn't down grade to a pilot at a smaller company. Would he have been hired to stow baggage?  He was gainfully employed for years after diagnosis, but at a tremendous cut in pay.

Iris L.
Posted: Tuesday, March 13, 2012 12:50 AM
Joined: 12/15/2011
Posts: 16199


Mimi, I'm surprised that there is not much interest in this topic.  With early diagnosis and early treatment through medications and Best Practices, I thought some patients, not a lot, but some might be able to continue working at a lower level of employment. 

 

Iris L.