the moment you hear the word dementia or cognitive impairment

Crushed

A poster wrote " I would have had everything completed because she has had dementia for a number of years. The problem is she is so young half the doctors/psychiatrists/neurologists said she had dementia the other half said it was some type of  serious stress"

My wife was 58 when she failed the clock drawing test. 

Yes her doctors were also hesitant to call it Alzheimer's  but bluntly with any cognitive impairment suggestion you can hope for  the best but have to plan for the worst
  You must see a qualified  eldercare lawyer right then 
you must have a plan
 
 You may have just become poorer and more financially desperate than you ever thought possible.   do not listen to anyone else

In our case DW was an administrative physician  working in a very responsible senior  government job. It was unclear how long she would be able to work but she had a ton of sick and annual leave. So I developed a strategy integrating leave , social security, her pension,  her work potential etc to maximize her income.  I had to fight her agency , later sue OPM but it all worked out.   I was her elder care lawyer. but I also hired outside counsel

We are now 12 years on.  I was her sole caretaker until 2017.  She is now 4 1/2 years in memory care.

  

   

  

Michael Ellenbogen

Why did you have to sue?

jfkoc

I did not know you were an attorney. That was a great help.

It is  unfortunate, but hard to realize that we, all of us, need to have our ducks in a line.... routinely. 

Crushed

Michael  there is a federal statue and regulation DW was a disability annuitant
 

§ 844.305 Redetermination of disability annuity at age 62.

Effective on and after the annuitant's 62nd birthday, the rate of annuity payable to a disability annuitant will be the amount of an annuity computed with respect to the annuitant under 5 U.S.C. 8415 (including subsection (g) of that section), including credit for all periods before the annuitant's 62nd birthday during which he or she was entitled to an annuity under this part. The average pay used in computing the annuity under 5 U.S.C. 8415 is adjusted by all cost-of-living increases effective under 5 U.S.C. 8462(b) during the period the annuitant was receiving the disability annuity under this part.

Now for almost most people this redetermination is a reduction  due to the way the disability annuities are calculated    However if you become disabled between 60 and 62 and have more  than 20 years but fewer than 30 years service  the required calculation produces an increase in the annuity.  OPM simply refused to follow the statute.  So I took them to the MSPB we lost at a lower level  but the day before it became public the General counsel's office settled the matter and she was paid the full annuity

I have to say with some pride that three good law firms in DC thought the case was unwinnable because  the OPM uses the MSPB as its home court .  But I found a case in which they had taken the exact opposite position on a key issue  in a matter 5 years before .
   with that precedent in hand I wrote the best brief I ever wrote and they threw in the towel

jfkoc

Bravo Zulu!

Iris L.

Crushed wrote:

  but bluntly with any cognitive impairment suggestion you can hope for  the best but have to plan for the worst 

  You must see a qualified  eldercare lawyer right then 
you must have a plan
 
 You may have just become poorer and more financially desperate than you ever thought possible.  

Crushed is absolutely right about planning for the worst.  And part of the worst is that professionals who call themselves "senior advisors" (doctors, lawyers,, accountants, social workers and the like) are very often clueless about how to advise a PWD and family, meaning saying exactly what Crushed said above.  

Patients and families are left unprepared and unprotected, often for years, until they stumble upon these boards.  They have wasted time.

Iris

Michael Ellenbogen

Thanks, I thought it may be another case were the person was fired from work.

Michael Ellenbogen

Iris is very right about that and I dont know how one would know and it is sad that you can not trust anyone.

Crushed

  early onset dementia patients are the stepchildren of the entire medico legal system. The emotional struggles are worse . the financial disaster is worse, They can have young children ,professionals are ignorant , and they don't even get any recognition for the Alzheimer's association.

I personally and WRONGFULLY react badly emotionally when Alzheimer's hits an older couple.  My mind screams my wife and did not have one normal year in her 60s what are you complaining about.  I'm wrong, I know I'm wrong and it is uncharitable

For us Alzheimer's came before retirement, grandchildren, and many other things

DW will be 70 in May   she will not know it.

  

Crushed

Michael Ellenbogen wrote:

Thanks, I thought it may be another case were the person was fired from work.

Actually there was a small element of that. 

She was a vital government employee and had annual leave accumulated far in excess of the normal limit. To maximize her pension I had to keep her in her poition  and use the sick and annual leave even if she could not work .

DW had to keep her medical license to keep her position and use her annual and sick leave. she ahd already completed all CME   So we wrote the medical board that she was a disabled administrative physician who had no patient care responsibility and would do nothing medical that would be affected by her disability . They accepted that assurance
As a a final victory I got her on SSDI even when she was still in her federal position on medical leave and a licensed physician.  I pointed out that the SSDI was based on being FACTUALLY unable to work   Social security approved 

Michael Ellenbogen

I had lost my job about 5 years in to trying to figure out what was wrong with me. My company had fired me because I believe they knew something was wrong with me as they paid my medical records directly as they were self-insured. It was not till 5 years later that I finally found out what was wrong with me. Sadly, the US law only allows on 2 years to claim wrongful termination. I totally got screwed as I would have been able to collect 70 presents of my salary for life amount with all my benefits that I lost. I would have been doing really great but instead I now have to relay on SSDI.

 

This disease sucks and they need to change the laws around it until the find a way to diagnose it better. Sadly I know many today that have similar issues. I try to help them out so they don’t get trapped Like I did. I only wish I knew what I know today then. This was a very costly mistake. 

Fairyland

I always hesitate to post here (about my old mom) because I realise (dimly no doubt) how much more difficult if I were not an only child with some resources left by my father who died without dementia, then add on how horrific it is dealing with a spouse/partner, and then add a further order of magnitude if it is early onset as well.

I will never forget, as long as I still live a conscious life, even if I am lucky enough to avoid those issues in my own life. I resolve to do more to help families facing these issues, when I am able.

You chaps are doing a great job explaining and advocating for those who cannot. 

jfkoc

there is no way that it can not be more devastating when it hits a young person

Iris L.

Regarding Michael's story, this is why I suggest that working YOAD patients   take short term medical leave of absence pending completion of the medical and neurological evaluation, which will take weeks or even months.  If the results point to Alzheimer's Disease or another dementia, they will need to take early retirement on long term disability benefits.

Short term disability usually requires a doctor's note and signature.  Long term disability requires lots of medical documentation and may take weeks or months to obtain.  Consultation with human resources and/or an employment or disability or other type of lawyer may be necessary.

Iris

A. Marie

Everybody, listen to Crushed whenever he has anything to say. Crushed is wise.

My own DH is on the cusp between early and late onset: He started showing symptoms at 62, was finally diagnosed at 69, and had to be placed in skilled nursing last year at age 72. He no longer knows me or anyone else in his life, is barely mobile, can barely speak, and is incontinent x2.      

I'm 66.5, and I keep coming back to a diary entry by Edith Roosevelt (TR's wife) years after TR died (at age 60, not of dementia): "Dark morning tired old child facing a robbed life. Praying for its end."

JoseyWales

I think one of the problems with dementia is that it can take years for a diagnosis, especially for those with early onset. 

During that time, you think "Maybe it's just me getting older" or "Maybe it really is just depression and stress." Until it's too late.

I hear people talk about their memory issues that are identical to what DH went through early on, but I know the odds of them having early onset dementia are slight. I do tell everyone I know to have wills, POAs, health care directives etc. in place even if they are young and healthy. It's never too early.

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