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SSDI Yesterday
Posted: Sunday, August 28, 2016 6:53 PM
Joined: 7/14/2016
Posts: 20

Yesterday I received news that I have been accepted to receive SSDI. It was 6 months. I believe I was accepted  (compassion claim) not only due to the dementia dx but long term depression as well. I will automatically be accepted into my state disability retirement status as a state employee this month. I know it's going to be a long road but at least we will have income without the stressful job. I have two major appointments this week hoping for answers to the questions that always come up about this illness.
Mimi S.
Posted: Sunday, August 28, 2016 7:13 PM
Joined: 11/29/2011
Posts: 7029

Great news!!!
Iris L.
Posted: Monday, August 29, 2016 10:31 AM
Joined: 12/15/2011
Posts: 16610

That is good news, Jim.  Having a consistent income does take a load off your mind.  

You will be eligible for Medicare in two years.  

I hope you are able to proceed with following Best Practices to help your functioning and to prolong the early stages.

Iris L.

Posted: Tuesday, August 30, 2016 7:10 AM
Joined: 5/20/2014
Posts: 4405


Good to hear you have one less thing to worry about.

Posted: Tuesday, August 30, 2016 8:38 AM
Joined: 3/7/2012
Posts: 2563

This is good news. The process is now behind you and you can take a deep breath.


Michael Ellenbogen
Posted: Tuesday, August 30, 2016 8:51 AM
Joined: 11/30/2011
Posts: 3460

 That is great news. What state are you in? Did they ever challenge you or was it smooth sailing all the way? Thanks

Farmer wife
Posted: Tuesday, August 30, 2016 12:41 PM
Joined: 8/30/2016
Posts: 4

Congrats Jim. I just joined today and this is where I am. Have the SSDI application in and they are sending me to another doctor for neuropsychological testing. What was your experience like?
Mimi S.
Posted: Tuesday, August 30, 2016 4:26 PM
Joined: 11/29/2011
Posts: 7029

Welcome to our world,Farmer's Wife.  We're so glad you found us. Do tell us more about yourself.  It sounds as though you are still in the diagnostic procedure.

Do tell us more.

Farmer wife
Posted: Tuesday, August 30, 2016 9:19 PM
Joined: 8/30/2016
Posts: 4

I started the process 3 years ago and have been diagnosed over a year.  Did the neuropsych test which suggested beginning  of progressive disease...!  Did the sleep study and no apnea but restless legs. Have had 2 brain MRIs and second showed some atrophy.  I was well below the "line" on 3 areas on my neurotrax test, which I am told will be done every year.  My MOCA scored went from 27 to 26, which I think is still pretty okay.  Did estate planning, wills,  and all power of attorneys etc.  Tried to get long term care insurance but have been declined 3 times already.  SO just applied for SSDI and have not gotten an answer yet. Running into issue with insurance not wanting to cover genetic testing and PET scan. AM scared because my husband is 10 years older than me and not in great health so (1) cannot take care of me long term and (2) I don't want to have to rely on someone else.  Just trying to methodically address each issue and what should be done but it can be emotionally overwhelming at times. The struggle to stay on an even balance is real. I am 58 and feel this is a very isolating process. Would welcome any advice.
Posted: Wednesday, August 31, 2016 7:51 PM
Joined: 7/24/2015
Posts: 3020

Yeah, it a real isolating experience...say the least.  You are no alone in this type of situation...many of us share similar situations.  There a huge group people dementia that are no in this forum...but there a great many in that group that on their own...or mostly on their own. 

Alz Asso gives stats as 1 in 5 are cared for by family members...that means 4 in 5 on they own.  Of those 1 in 5, 4 in 5 families will break down over it. 

There are virtually no resourses out there us...not of any consequence any ways.  There a good book called Dancing With Dementia by Christine Bryden that might give you some hope and encouragement.  Mostly we all find our ways ourselves. 

I still care for my elderly mother...pretty much by myself.  My youngest daughter lives with me, she 19...with a 1.5 year old baby...and she still needs a lot of taking care of.  So, I am virtually running the house here taking care of everyone single handedly. 

I have employed a lot of techniques, tips and tricks, help me stay on course and get through my day.  I stay away from fear mongers (those who are frightened for people with dementia) they only serve scare me and make me unsure myself...and it takes a long time recover from.  There are a lot on these boards, hopefully they wont put their fears on you. 

I also find daily reminding myself WHO I AM...and re-realizing that I am still me, I still have my whole range emotions...I still notice what going on even if I can no more say or articulate it...I still have insights, reflections, an revelations...I am still growing as a person. 

I also make a point acknowledge...on purpose...that there is a lot of good be had with a dementia dx.  For one...I am granted TIME...time get my affairs in order, time say the things that need say the people I love...TIME just live and BE.  I love that it gives me the gift of time. 

I get experience the beauty and wonder of each day anew...I real love the blue of the sky, and every day it like I am seeing for the first time...I real love re-discovering just how much I enjoy the blue sky, or flowers, or butterflies. 

It very easy slip into depression, at least for I have make a point stay on top of making sure I am filling my day with positive insights.  I consider it as important as my meds. 

Also, stress management...stress makes our symptoms worse (they ease back when stress gone)...but I also manage and avoid stress at all costs. 

I am honest myself, I face things head just my, I am clear with myself that I only have so much time left...I make the intend use it well.  I am more committed that now that I know I will die, than I ever was before.  I do no let anyone or anything interfere with my enjoyment the last bit my life.  All my life I have given myself away service others...I still am, but a part of me claims this time for me...although I still do many things others, I have pulled back many things...and given that time energy my peaceful enjoyment the rest my life. In short, I have retired...from my personal and social life. 

I also avoid, a large extent, "dementia" things...I find the constant reminders I have this depressing.  Away from this forum, I am just me...struggling on best as I can.  Here, I have dementia...and a stage...and omg I am getting so close my end time - ack.  And I am reminded that my struggles are symptoms of this big D word.  I am just much happier without that.  No that I don't miss the goings on the people here, I do...just that I have balance that. 

It takes a while get used live with it.  This place was real hard take for me in beginning, all the horror stories and fear...I had real heal from it.  Now, I can handle much better in small doses.

Hope that all helps in some way. 


Posted: Tuesday, September 6, 2016 11:29 AM
Joined: 9/12/2013
Posts: 3560

Jim - well done.

you should get a check for time from applying and receiving which is a nice bonus.

took me 3 years and a lawyer.

Iris L.
Posted: Tuesday, September 6, 2016 12:56 PM
Joined: 12/15/2011
Posts: 16610

Farmer wife wrote:
 (2) I don't want to have to rely on someone else.   I am 58 and feel this is a very isolating process. Would welcome any advice.


Farmer wife, I too do not have family members close by to care for me.  My plan is to maintain my independence for as long as I can and to care for myself.  I rely on Best Practices, which was promoted to me as a means of improving my functioning, which it has done, and also as a means of prolonging the early stages.  In my case, I am doing better than I was doing seven years ago, when I began using Exelon patch and Namenda and following the other aspects of Best Practices.  I believe my plan is practical and doable.  I am age 66 now, and I feel like I have at least ten more good years.

Dementia does not run in my family.  Nevertheless, my family members are not long lived, most dying in their 50s and early 60s.  I have already lived longer than most members of my family.

If I ever do need help from outsiders, I will only deal with preselected professionals who will treat me with dignity and compassion.

My biggest problem is dealing with depression.   It is hard to overcome reading depressogenic posts.  But now, I believe I have overcome falling into depression from other people. 

Be strong, Farmer Wife.  Read the posts on this board from PWDs (persons with dementia) and draw strength from us.  Be careful reading caregiver posts on this board, because they can be disheartening.  There is hope.  I call us Dementia Pioneers, because we are the first generation of patients who are pro-active in our own care.  

I am so happy that I am able to read the uplifting and inspiring posts from the members here.  I don't find such inspiration elsewhere.

Iris L.

Posted: Tuesday, September 20, 2016 12:48 PM
Joined: 6/16/2016
Posts: 33

That's great! Quick turn around from what I understand. I applied for mine a couple weeks ago. Fingers crossed!
Posted: Saturday, October 1, 2016 6:05 PM
Joined: 7/14/2016
Posts: 20

I just wanted to add that my SSDI's was granted do to other dx in addition to the dementia. No two claims should be compaiered to another. Mine was very unique. Not worse than others just very unique in three separate dx. I live in CT, I know someone asked. I could not have even applied without my wife, and a very good private lawyer. As I was accepted in 6 months (minimum time allowed) there was no back pay or attorneys fees. Attorneys are paid out the $6000 from retro pay, only if there is some. She is still working on my state claim (CT state employee) so she will be paid for that and we hope to close that by the end of the year. 

As for today we just got back from two days of testing at Yale. Thursday was ct/MRI scan followed by a pet scan. Friday was a lumbar puncture. Great hospital and the testing went well. We stayed near by and they had a free shuttle.  I won't know for a few weeks about all of the results but I'm so glad to have the testing done and hopefully provide more answers.