When the realization set in that my mom would be unable to go back to work in her current state of mind (in the fall of '11), my dad began seeking assistance to supplement her income, such as disability or Social Security. Trying to obtain Social Security has been an absolute headache for my dad.
When he first applied for social security, late last year, we had no definitive diagnosis for my mom. She had had a CT Scan by her network neurologist, who stated that there was shrinkage in the frontotemporal lobes of the brain, but he reassured my parents that it was NOT dementia or Alzheimer's. We were left with many unanswered questions and chalked it up to brain damage from her surgery. (You can read the full timeline here ). One thing was clear: she was no longer able to fulfill her duties as a HeadStart teacher.
My dad applied for Social Security and sought out the neurologist to sign a form for disability. For months, he was given the runaround. The neurologist directed him to her primary doctor. After waiting for an appointment with the primary doctor, the doctor directed dad back to the neurologist. They told him to go to a psychiatrist who then pointed him back to the other set of doctors. He got second opinions from other primary doctors and neurologists...bottom line: nobody wanted to take responsibility to sign her disability forms. It was an absolute nightmare!! At one point, social security provided their own doctor to come and assess mom (I believe that was early this year, around January, before her diagnosis, but possibly at the end of last year). Their doctor concluded that she was "fine" and they didn't see anything out of the norm with her. I want to know exactly what kind of doctors they hire!!!! Do they even have a medical degree? It doesn't take a rocket scientist to see that mom is unable to function on a higher level-even back then. At any rate, she was denied social security and told that they could appeal her case.
Dad finally hired a social security lawyer. He filed for a waiver, I believe before we had a diagnosis. I'm a little fuzzy on the timeframe of all of this, as it was one big headache. But by March, she had her diagnosis and they were able to submit that to the judge. And then the waiting began. Dad was told that he could be waiting up to 18 months for a court date. Can you imagine?
In one of my support groups that I belong to, some other group members informed me of a "compassionate allowance" with social security. Basically, if a person's illness falls under one of the listed categories of illnesses, they have the right to a speedier process, foregoing the many hoops that one must go through to obtain social security. On the list are many forms of dementia, including frontotemporal lobe dementia. I saw the light at the end of the tunnel! I gave my dad this information (this was during the summer...around June or July) and he took it back to the attorney. They acted as if they weren't sure what he was talking about. I researched the social security website myself and sent the links to my dad to forward to the attorney.
By August, my dad received a notice in the mail that he had a court date: December. We were disappointed that it was so far away, yet we knew it could be far worse (at least the date wasn't a year away!) We were frustrated because, given the compassion allowance, she was eligible to see the judge in a matter of weeks rather than months or years. Again, my dad took the information and sent letters and updated paperwork from UCLA over to the attorney. They said that they would "look into it". This was end of August/beginning of September. My dad never heard back from the attorney about the compassionate allowance.
By October, I decided to take matters into my own hands and help my dad out. It's been difficult for him to stay on top of all the phone calls and paperwork, as he has a job away from home, as well as many duties he's had to assume in the home. I called social security myself, with the same outcome that my dad had: waiting on hold for an hour at a time, only to be told that the can't give me any information about my mom's case due to the fact that she had an attorney. After several phone calls, and a lot of wasted time on hold, I felt defeated. I called my dad to report the outcome. He told me that the attorney told him that they actually could give me information about her case, they just don't want to be bothered. This tidbit of information relit my fire! I immediately got back on the phone, ready to fight with the last operator who had been extremely rude and unhelpful. I asked for supervisor and got his secretary. I left a message for the supervisor and for the first time, I felt like I had reached someone who actually listened and sympathized with my position. She assured me she would give him the message and tell him it was urgent to call me back.
Half an hour later, I received a call from the supervisor who very willingly gave me all of the information I needed. I asked him about the compassionate allowance (which, by the way, none of the other social security phone operators knew a thing about) and he agreed with me that her diagnosis fell under the compassionate allowance. He pulled up the paperwork that was submitted by the attorney and read it to me and together we concluded that the likely reason that they did not qualify her immediately for the compassionate allowance was because of the wording in the letter. They used the proper term for her illness, "semantic dementia", which is a form of frontotemporal lobe dementia, rather than using the term "frontotemporal lobe dementia". They most likely did not realize that semantic dementia fell under the frontotemporal lobe dementia category. He told me that if I could get another letter from UCLA stating that semantic dementia was in fact FTD, that he would be more than willing to file it electronically himself, saving me the headache of having to go through the attorney. Afterall, this was the attorney's job to investigate in the first place! Somebody didn't do their job.
By the time we were able to obtain another letter from UCLA and file it with social security, we were only weeks away from our December 3rd courtdate with social security. But we now had the evidence filed that she does qualify for the compassionate allowance as well as the benefits, and that was a comfort.
After months and months (over a year) of dealing with this nightmare, my mom finally had her day in court yesterday. Even though we had all of the proof and evidence we needed to win the case, I was still a little nervous about how they would rule. Would they take the time to read the papers and understand her illness? We had been through so many hoops to get to this point; I was praying that we would not face anymore setbacks.
Less than an hour after she was due for her hearing, I received a phone call from my dad. They won the case!! He filled me in on the happenings of the hearing.
They met with the lawyer for some time before the actual hearing, to review all of the information. The established that mom was not driving, per doctor's orders. My dad informed them that we have people coming over a few days a week to supervise her and make sure she is safe. After that, they brought mom and dad into the courtroom before the judge. They talked to my mom and told her that she needed to be sworn in. Mom looked back at them with a blank expression. They tried to explain to her again that she needed to take the oath and be sworn into the court. Mom did not understand what they were trying to tell her. My dad said they spent the next 10 minutes trying to explain to my mom what it meant to be sworn in and tell the truth, and she just was not getting it. The judge looked at her and asked,
"Would it be the truth to say I'm wearing a blue robe?"
Mom responded with, "No it looks black to me."
He tried again, "Would it be the truth to say that you are a blonde?"
Mom answered again, "I'm not a blonde, I'm a redhead."
After several questions, I think it became apparent that mom was not understanding what was being asked. They simply were not able to swear her in. Finally, the judge said,
"I don't have any questions for her."
For a moment, my dad was a little confused and I think worried that they were not going to hear the case. But after some court verbage between the judge and attorney, the attorney came back to my dad and said they had won the case and they should be receiving the final notification in the mail within a month.
What a sigh of relief! There is still much work to be done, but this opens to the door to many more possibilities. My next step is to try and qualify her for Medi-cal (this can be done 30 days after she receives social security) and then get her onto a county program that provides assistance throughout the day. We are one step closer!!