When to Tell Employer of EO diagninos

LizJar

My husband has been recently diagnosed with a type EO FTD, more specifically Semantics Dem. (effects language, word finding, understanding) at the age of 50.  He currently is still working, however I fear he won't be able to work until he is able to retire.  I want him to be protected at work because of his new disability, however I am afriad of him telling them too soon.  He works for a national company and has very little day to day contact with his “bosses”.  He only sees them a few times a year and everything else is based on sales and numbers.  Any advice on when and how to let the employer know would be very much appreciated.  I just don’t want him to loose his job after being with the company for almost 30 years because of his disability.

Marie58

LizJar, welcome to the forum. It's full of knowledgeable and supportive people. I'm sorry that your DH was diagnosed at such a young age and that you have a need to be here.

I'm sure others will chime in with advice for you. I don't have advice, just my story. DH was diagnosed at age 60. He actually made a doctor appointment on the advice of a colleague. He was already having difficulty at work, more than I realized. Within about 5 months of diagnosis, HR called me in for a meeting. His boss, colleagues, the union president and HR was there. Fortunately things worked out well for us. They helped with a plan to retire early, get all his benefits due him, helped me get his short term disability insurance, and steered me toward social security disability income (I think that's the right term). Anyway, it worked well for us, but others have different stories. I wouldn't tell DH's employer until you get advice on how and when to tell them so you have protections in place.

Blessings to you, DH and your family.

dayn2nite2

Does he have both short and long-term disability insurance with his employer?  If so, has he had any issues occurring at work regarding his performance?  He may not be a reliable reporter, is there anyone he works with who would be able to determine whether he has made errors in his work or a lack of performance, poor review?

If he is having performance problems, I would have him go out on short and then long-term disability before he gets fired (because if he gets fired the disability insurance disappears).  If you don't know or cannot tell whether he is in trouble at work, you may want to do that anyway.  Please make sure you have information what company the disability insurance is through and what the policy covers, what the procedure is for going on disability.

Ed1937

Liz, welcome to the forum. We have a lot of good people here who will try to help as much as possible.

"everything else is based on sales and numbers" That's the scary part. You really need to find someone he works with who you can confide in about his diagnosis, and whether or not there is a problem at work. He could be having problems that you don't know about. I don't think you want to tell them about the problem prematurely, but you sure don't want him to be fired. Depending on the company he works for, they might work with him as best they can, or they might only be interested in productivity. That's why you need an insider, if that's possible. Do your best to keep him from being fired. I'm sorry you are going through this at such a young age.

You also need to see a CELA (certified elder law attorney) ASAP. Don't even think about the cost for it. It will save you much more than the cost of services. If you let it go for long, you absolutely will be sorry.

JJAz

If you've noticed changes in your DH, then his employer has noticed changes too.  When was his last performance evaluation?  What did the "areas for improvement say?" This might give you a hint. Fortunately, he has a professional HR department.  When it's time, he should probably approach them regarding his disability, not his boss.  I agree with the CELA recommendation.

JJ401

Your DH was recently diagnosed with Semantics Dem. (effects language, word finding, understanding). What made him/you seek the appointment that led to the diagnosis. Even though we don’t know what the problem is there is usually a symptom that leads to the first appointment. Your spouse may be farther down the road than you realize.

Language, word finding, understanding are all necessary to succeed at sales. Even minor losses in these areas can make a sales job success impossible.

Ed1937 and dayn2nite2 have pointed out essential things you need to do. Finding out about job disability insurance, consulting an elder care lawyer are needed to ensure your future financial health. But he’s not elderly you say. He’s not, but the elder care lawyer deals with the issues he has. The elder care lawyer is the expert you need. And when I say you, I mean that you need to make the contacts and take the lead on this. At the point that our spouses are diagnosed they pass the lead to us. 

I am sorry you have had to join us on this site, but glad that you have found it. There are so many helpful people here, who have walked and are walking the same path. They are a font of good information. Don’t hesitate to ask.

Battlebuddy

   My husband was diagnosed at 52 . He was working at the time. He new something was off but of course we never thought it would be Alzheimers. 

   He was doing ok at work, but one or two coworkers had begun to notice a little confusion . He missed a meeting he was supposed to go to, and couldn’t remember how to write down his hours. 

    But when he told me he couldn’t remember how to preform a certain function at work , I got scared he would be fired. I made an appointment for a lunch time doctors appointment and went with him. ( a missing piece of the puzzle) He had had an MRI a month before that showed shrinkage, and for the first time I heard what the doctors suspected - dementia. 

    The doctor suggested he go on FMLA right there - right then , and started the paperwork. He never went back to work. According to Hippa rules we never told his employer his diagnosis. Short term disability became long term disability.  It was substantial because he had a good salary and was to receive 70 percent of it. 

    DO NOT wait . Your husband will not be able to do that job much longer. Get out and get the money he deserves. But make sure you have a solid diagnosis with documentation. 

   I feel for you. For me those months were the scariest. It’s so much to take in and you have to do a complete one eighty. Just recounting the story here is making the heat rise in my face. I have a little PTSD from those months

  But I got through it and so will you! 

Ed1937

JJAz wrote:

 When it's time, he should probably approach them regarding his disability, not his boss. 

Excellent advice.

Iris L.

Ditto dayn2nite2 and everyone else above.  Short term disability usually just needs a doctor's note.  Long term disability requires lots of documentation.  Look into the program the Alz Assoc started for getting early SSDI benefits for those under age 65 (I can't remember the name).

Iris

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MaryG123

I have nothing to add to the excellent advice above.  I just want to emphasize that you need to pursue disability benefits now, don’t wait.  And you will have to lead him through it.  Since you have a diagnosis, it’s not too soon.

David J

My wife was asked to retire at 52, because her employer knew something wasn’t right with her. Luckily for us, the employer fully supported her in her disability claims, so she was able to get Social Security Disability and Long Term Disability Insurance payments. For her employer’s Disability Insurance policy, SSA Disability was a prerequisite, which is pretty standard. 

I agree with the advice of others:  Get his doctor to do the diagnosis and get your SSA paperwork in. Don’t wait until there are performance issues before acting. Present HR with a done deal so they can’t fire him for cause. Also with the doctor’s diagnosis, he will be eligible for Short Term Disability. 

Good luck, and get legal help. 

David J

Rescue mom

I thought my DH must be doing OK at work—even though I could see problems at home— because he kept going, and nobody mentioned it. I wish I’d asked. Turned out his problems were seen at work long before he got the Dx of Alzheimer’s, and he was being left out, blocked, or kept out of, a things at the office. A difference from you, I think, is that he was senior partner  in his firm, and firing was more of a problem.

He could not do the job. It wasn’t a matter of accommodations like those provided for many more “physical”  disabilities. He has a brain disease. That means loss of cognitive abilities, the losses only get worse with time, and…he just couldn’t do that work any more. It was much later I learned if problems had developed with work he’d done while impaired, it could have led to catastrophic legal consequences for him/us and the firm.

 I echo others, you need an attorney like yesterday. It may sound expensive, but you have much more to lose. If he gets fired, that affects his disability payments, which could be huge longterm. 

As someone else mentioned, Id be extremely careful about when and what I took to an HR. These days, HR is as likely, if not more so, to protect the company, not the employee. (Who signs their paycheck?)  And many companies are quick to cut potentially “costly” employees while they legally can. That said, you need to find out about disability benefits, and legal standing, fast.

Jo C.

Hello Lizjar and a very warm welcome to you.  I am very sorry for what is happening and can well understand how deeply concerning this must be.    It is much more serious in this long term life changing situation to do things the best way possible in order to prevent unwanted negative outcomes.  This is of even increased importance especially because you also have two children.

Frankly, I feel the following is important.  I would advise not telling anyone at his workplace about this situation at this time; definitely not his boss and also not any of his workplace friends or others.  Amazing how even "nice friends" tongues will wag; it happens.  You do not  want to take a possible risk of him being dismissed by his employer before all the ducks are in a row so to speak which may lead to long term undesireable outcomes.  The first and most important thing to do is to get good legal advice asap regarding the best way for your dear husband (DH) to process his disability leave to maximize the best outcome for himself and your family.  Do it asap to avoid the potential possibility of his administrative bosses striking first if his performance has been suffering sufficiently to be noticed and cause his dismissal.

An Employment Attorney will be well versed in the best approach and all the legal protections.  It should not take more than one visit to be provided adequate directions in the best way to move forward.  Once that is in place, then Human Resources would seem the most appropriate place to begin.  The Attorney will advise re that.

I also agree that at this very young age, it is going to also be crucially important to seek the advice of a Certified Elder Law Attorney.  Even though your DH is young, this specialist attorney has the best in-depth critical knowledge for a client with dementia so as to set up a safety net as much as possible.  This attorney will also provide advice as to how to position yourself best financially for the future as the disease advances and will put together the necessary legal documents to support you and family; this should not be short-changed as it can make quite a difference.  You will want to have this done very soon while your husband is still considered legally able to sign such documents.  It can mean some financial fees, but can save you much more into the future.

It is a confounding time and can also be quite frightening.  Once you have the disability process in place, one can begin to form a good support team.  Family; friends; church; a good primary doctor for his healthcare as well as a good dementia specialist to manage all things dementia which can indeed make quite a difference.

Having some counseling or education re dementia for the children who are old enough to understand will also help them to process and deal with the changes they will see in their beloved father and it will be a supportive help to you too.

We are all here in support of one another and that now includes you too.  Let us know how you are and how things are going; this is a very safe place to be able to communicate and share what is going on in the dementia life.

The Alzheimer's Assn. has a 24 Hour 365 day a year Helpline that can be reached at, (800) 272-3900.  There are no fees for this service.  If you call, ask to be transferred to a Care Consultant. They are highly educated Social Workers who specialize in dementia. They too are very supportive, have good information and can also assist us with some of our problem solving.

There is also an excellent writing that is considered highly helpful and can be printed off; it is about 30 pages long::  "Understanding The Dementia Experience," by Jennifer Ghent-Fuller, a nurse dementia specialist:

https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

May all go well as you move forward.  I send warmest of thoughts your way and wish you the very best, let us know how you are; we care.

J.

Crushed

I would only add you need multiple legal skills

Elder law, Social security  and disabled Employment   Elder law includes medicaid eligibility

however in our area firms routinely have all these skills in the same firm.  
I have colleagues who do all three but focused only on dementia

Michael Ellenbogen

 The one thing I would add is if he has benefits change them all to the highest pay out before you do anything else.

zauberflote

This is wayyyyy off topic, sorry!, but Michael, I think you should change your avatar pic to the one of you looking like Dale Earnhardt at NASCAR! That is a fabulous pic; I loved it!