The Disability Merry-go-round

I need to share my experience trying to get a diagnosis and attempting to get Alan on disability.

The first doctor didn't have a clue. Even though Alan was way past early-onset, this doctor did some blood tests for everything else and assured us he was just fine. No signs of either parkinsons or alzheimers. Like I said, the man didn't have a clue.

I told a nurse in that clinic what had happened and what I was observing in Alan. She advised me to go to the local free clinic and speak to the doctor about what had happened (He was head of the clinic where the first diagnosis had happened).

This doctor took much time talking to Alan, getting responses then taking a walk with him. He said Alan didn't walk like he had alzheimers but he definitely was confused. His best guess was frontal lobe dementia but he just wasn't sure. He sent us to the memory center for testing and the hospital for an MRI.  The MRI showed there was shrinkage in the frontal lobe, certainly not a good sign.

Going home I hit the internet to research both alzheimers and frontal lobe dementia. I was confused by what I found. He fit most of the signs of being in the mid-critical alzheimers but not all of them. Then he also fit most of the signs of frontal lobe dementia. About the time I'd decide he had one, I'd change my mind and decide it must be the other one.

The MRI was in at the end of summer but it was the last of November before we could get into the memory center. Three different doctors…a behavioral specialist, a psychologist, and a neurologist.  The final dianosis: Frontaltemporal complicated alzheimers and essential tremor.  They said it was no longer safe to leave him alone.

This left me having to quit work because Alan had no money or insurance, and I only had my social security. If I left him alone and something happened, I could now be prosecuted for abandonment. Talk about a rock and a hard place.

I finally got him approved for food stamps (which have not started as I write this).

The doctors all told me it would take about 2 years to get him on disability. Now there was some good news that made me want to puke on my shoes….

I read in the news that a new law had been passed…if a person had frontal lobe dementia, disability could be expedited.. And until that happens they will get you on SSI until disability starts.

Yeah right. Another brick wall.."We don't show anything in his records about alzheimers." So I did the only thing left…I cried, and I snotted, and I cried and I couldn't stop and I told the woman the whole story between sobs. I apologized, then I cried some more and I snotted some more. I felt like I had just hit rock bottom.

She was very sweet. "I'm just going to go ahead and approve this before we hear from the doctor. And you just send your divorce papers as soon as you get the envelope I'm sending you. But I'm approving it right now."