Friday, January 20, 2012

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."

Thursday, January 12, 2012


Alan was 30 when we got married and was so forgetful we called him the absent minded professor. One of the warning signs: When the person keeps consistently losing things. But Alan had always been that way. Every morning all the kids and I had to go on an all-out search for either Alan's belt, or his wallet, or his notebook. EVERY day. He was the most disorganized person I had ever met.

Another sign: Not being able to remember people's names. Alan always tried to call people by their name. I don't think I EVER saw him get one right.

Warning sign: Total lack of empathy. We started dating when he was 23. Thinking back I remember many times thinking he never had ANY empathy for anyone. He wasn't mean, he just didn't seem to have "feelings". He would get angry at his dad but never expressed any anger towards me. He seemed to be mostly lacking emotions, but then he had started using drugs when he was young.

He also started drinking in college and was a full blown alcoholic by the time I met him. I didn't know that. I knew he drank a lot. But at that time I knew nothing about alcoholism. It was only after we married that I realized he was having blackouts when he drank. We married in 1981 and Alan sobered up 13 months later.

We did have lots of fun, but because some of his quirks, and even though we lived in the same house, we became emotionally estranged around 2003. He had always shown a lack of respect for other people's possessions. If it was in his house, it was his.

Around 2008 I could tell he would have been in my things while I was gone. He'd always deny it but since he never closed a drawer it was pretty obvious. By 2010 he would constantly rummage through all of my things while I was at work. He was driving me crazy. That's when I divorced him.   I finally had enough of what I was calling the disrespect and the lying. His response whenever I asked him if he had done something, it was always the same. "I don't remember." Or he would just outright lie. At least that was MY interpretation.

He walked in one day smiling and announced he had just gotten fired. I asked the obvious question. "Why?"

"I don't know," he said calmly.
"Alan, they had to tell you why", I said.
Same response and I knew I had be lied to again. "I don't think they told me. I forgot what they said."

Two months later same scenario. Walking in he announced he had lost his other job. Second verse, same as the first. This time his response, "I don't know but they said I should have called a supervisor."

At this point Alan was home all the time. He was searching for a job. He had to keep a list of every place he applied. The first place he tried was the local market.

A week later he said he was going job hunting. I asked where he was going to apply. "The (local market)." I told him he had done that the week before. He went there anyway because he had no memory of already going.

Third week - "I think I'm going up to (local market) today and apply for a job."

All of a sudden, Alan started following me all over the house. Strange because he had always been a loner and so had I. I couldn't leave the room to go to the bathroom that he wasn't right behind me. He would follow me to the kitchen and stand right there while I cooked. Where ever I went, he went. It was driving me out of my mind. I had no clue this was a symptom called "shadowing".

I told him to just stay home and take care of things while I worked and that would be a great help to me. He would do dishes. The problem was every time I started to cook dinner, I had to go on a search for my pans, my utensils, etc. I might find one pan in the cabinet with the bowls. I might find a utensil in the pantry with the food. This was the routine EVERY SINGLE TIME I had to cook a meal. When I'd ask where he put something, same answer. "I don't know."

He would do things that would end up with me screaming at him. He would just stand and look at me with this dumb looking smile on his face like I was being extremely amusing. I didn't realize this was a reaction because he didn't even hear or understand what I was saying.

He was starting to get a look in his eyes like the lights were all on but nobody was home. That's when I started doing some research about alzheimers. Alan had no money and I couldn't afford to take him to a doctor. He claimed to have insurance, but he didn't. He just remembered getting some at the first job where he was fired.

Alan had never been much of an "eater", but all of a sudden he began to go through a loaf of bread a day by squeezing it tightly into wads and eating it. He'd sneak into the spaghetti, maccaroni and noodles and eat them uncooked right out of the package. I would go in to cook a meal and everything I needed would have been eaten. If I went to the market and bought enough groceries for a week, he would start eating. Everything would be gone by the next day. And he was not gaining weight.

He would load the dishwasher, then forget he had just loaded it. All the dishes, glasses, cups and silverware would be put put back in the cabinet still dirty.

At one point a friend of mine who is an R.N. came to spend the night. During that visit she said "Something is wrong with Alan." If you talked to him, he would seldom answer. He never initiated a conversation or took part in one.

Alan was still sweet to me. He would make coffee of a morning and bring me a steaming cup.  I always enjoyed it and never even knew the cup was dirty until I got to the bottom of that cup. By then it was too late to worry about it.

Her next visit was a month later. "You've got to get him to a doctor. I can tell a big difference since I saw him a month ago." She blew a hole in my boat that was still hoping it was just Alan being his normal eccentric self.

Another nurse told me to make him an appointment at a local free clinic.  Alan didn't think anything was wrong. Me? I was convinced I was getting crazy as a bedbug.