The story of Bob. Asperger's, manic depression, Medicaid

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The story of Bob. Asperger's, manic depression, Medicaid

15 Aug

We used to maintain offices in several local independent living retirement communities. Right next door to our first outside office lived a guy, who we will call Bob.

Bob was in his 70’s. At first look he seemed a little peculiar, but mainly lonely. Because we kept the office running 24/7, he visited often. Generally folks in the office were fairly kind. I mean, for a living they choose to take care of others. They know they are not going to get rich. So they tended to wait in the office doing admin or computer work while they were waiting for the next scheduled visit with a client or for the pager to go off, notifying them that a client needed help. So Bob would saunter in, and commence to tell them a long winded and oftentimes very personal story about his past.

As time goes by, we learn that he is not just unusual, he has been alone most of his life. He was likely the guy in high school that did not quite fit in, but who most folks were kind to because he was a threat to no one. He tells us that he has suffered from depression his whole life and that it runs in his family. He struggled to get through, but all his life he was basically run down by his parents, who it turns out had similar mental challenges. He has a tendency to tell folks very personal parts of his life, up to and including that his mom used to thump him and that when she did, they both became sexually aroused and had orgasms.

When I first heard that yarn, it naturally set me back. Mainly because my mom was from that generation where pounding on the kids was not so unusual. The idea of getting aroused by that was no kidding fairly appalling. This from a guy who has travelled the world in the Navy and figured I had already heard whatever there was to hear about in the kinky league.

Later I learned that Bob knew how to get a rise out of folks. He actually has Asperger’s disease, but we did not know that at the time. He asked us to help him with his basic activities of daily living. We figured out fairly early on that he needed medication reminders. Living next to Bob was like a learning lab for our young firm.

As time passed and our reputation as a quality firm spread, we decided to get out of the business of operating an office in a retirement community.  So we moved away. Right after we left, we received reports from the managers of that community that Bob was having challenges. He fell down while walking outside and smashed his glasses. He was failing to manage his own meds, and screwed up his 13 pills per day. One night he over medicated himself and fell out of bed, landing on his arm. He screamed through the night for help, but no one heard him until the morning. The facility managers called 911. The EMT’s took him to a local hospital in an ambulance. The folks at the hospital did not really know what was wrong with him. Just to play it safe they labelled his problem a mild stroke, but there was no firm evidence. It was simply a convenient white lie that would get his insurance to cover the cost of the hospital stay and give the hospital plenty of time to make sure they were not missing anything obvious.

At the end of about a week, they transferred Bob to the skilled nursing/rehab facility that was connected to the hospital. They kept him there for another week.

16 Aug

So I visited Bob throughout that week. He was disoriented and frustrated. His meds were adjusted. He was interviewed. Lots of notes were taken and recorded in his files. At the end of that week, on Saturday, I picked him up and returned him to his apartment at the independent living facility. I picked him up for church the following morning. He seemed fine and relaxed. After I dropped him off at his place after church, Bob decided to make a trip to the local grocery store in order to buy some laundry detergent. He used a walker to get around. He stopped first for a cup of coffee on a sunny day. On his way out of the grocery store, he failed to navigate a ramp while carrying his heavy jug of laundry detergent and took a spill in front of several shocked shoppers. They called 911. The ambulance arrived. Bob dusted himself off and went home. The next day he called 911 and checked himself into the emergency room at the local hospital. He was well acquainted with the staff by now. He stayed at the local hospital for a few days, then was released under the condition that he go to his primary care physician. I took him there. They wanted him to see a neurologist in order to investigate if he was having complications from the stroke that no one ever proved he had.

So Bob was rapidly slipping into a financial hole that he could not ever dig out of. He barely had enough to cover his monthly expenses without all the medical bills. Although he was generously covered by an ex-government employees medical insurance policy, the co-pay on his meds alone cost over $600 per month. Now he was going to have to bear the expense of all the medical tests that proved nothing and the extended stay at rehabs centers and hospitals. He was also having to bear the expense of all those fun 2 mile long ambulance rides. My understanding was that he was not eligible for Medicaid because he earned too much. Someone told me that the Medicaid calculation was based on his net income after expenses. So I looked into it. Bob is all alone in the world. In spite of the fact that he was a raging right winger, I applied on his behalf for Medicaid. I did it online. By the way. Online is lovely when it comes to avoiding large government bureaucracies. I say this as a veteran of extended service in the US Navy.

In the meanwhile, it was becoming clear that Bob could no longer live independently. His decision making was going downhill. He needed help to take a bath without falling down. He was becoming incontinent. He stumbled a lot. He could not manage his bills. He was an easy mark for various scam artists who prayed on the week minded. So I went shopping for local assisted living facilities that might accept Medicaid. There is one in our town that is in the middle of a reconstruction project. I suspected that they might be willing to strike a deal while the construction was hurting their sales. So I went to visit. The person running the place was someone who I knew and trusted from her time in a different role at another facility in the nearby area. She was actually the one who let me now about Medicaid. Although she initially was not interested in taking on Bob as a resident, she became interested about a week later. So in order to start the admission process, we arranged for an admissions interview by the nurse from the prospective facility. Within 5 minutes of the start of the interview, Bob gave her the story about the weird thing with his mom beating him and them both getting off. She naturally had a small cow and rejected him from admission at the new place. I failed to mention that prior to the interview, Bob had been invited to a lunch at the facility. He was really looking forward to moving into the new place. When I gave him the news that he had been rejected, he went into a tailspin. That night, he called 911. When the EMT’s arrived, he told them he was thinking about committing suicide. So they slapped him into the Gero-psyche ward at the same facility where he had been a few weeks before. Bob knows how to get attention. He does not know how to commit suicide. When he said the magic words, the medical folks shifted into the suicide dance. It did not matter if it made sense. It is just what those folks do when a patient mentions the magic words. More tomorrow.

August 19, 2013

After a week in the gero-psyche ward, where people paid a great deal of attention to Bob, I brought him home on a Saturday around noon. I picked him up for church the next morning. I dropped him off back at his place around 11am. On or about 11:30, he went to the local grocery store in his walker to buy some laundry soap. When leaving the store he spun around on a ramp to the parking lot and fell down. Lots of folks saw it. He dusted himself off, went home, then called 911 a few hours later. On Monday he was back at the ER in an ambulance. He spent the following week in the hospital. So the Medicaid folks were starting to pay close attention to Bob now. He was becoming high profile.

The DSHS social worker came to screen Bob. Upon discharge 1 useless but expensive week later, I moved Bob in at my house. My reasoning was that he would be less of a pain where I could control his environment than having all the unscheduled crises that he was creating.

So we took a deep breath and moved Bob into our house. My wife Carole is a saint. She has infinite patience. Something told me that we should just do this. My family told me I was nutz.

When Bob came in, he was helpless and needy. He could not shower on his own, walk on his own, etc. by the time he left, he was calm, walking to and from baseball games, setting the table, washing the dishes, etc. He spent plenty of quiet time reading the Bible and a book about Abraham Lincoln. He watched news and baseball all day most days. He joined us at church. The congregation welcomed him with open arms, even though he was a bit awkward.

I went with him to several doctor appointments and psychotherapy sessions. During this time, it became clear to me that Bob’s problem was not that he was manic depressive. A more accurate description of his mental condition is Asperger’s.  The manic depression was an observable symptom or outcome of his Asperger’s if he was not accommodated. So during all this time, he had been receiving treatment for the symptom, not the root problem. I think this goes on a lot.

The general cycle of his psych treatment was that when he had episodes of rage and paranoia, the doctors just loaded him up with sedatives. When he complained about being too loopy, they backed off on the sedatives and then turned up the dose on the stimulants. Welcome to psychotherapy in America. I honestly thought it had to be more sophisticated in America. But it looks like the poor and those without a family member to champion his case, he gets treated to the back door and takes the path of least resistance. The only ones who benefit from this approach are the pharmaceutical companies. I believe it is shameful.

 August 20, 2013

Bob was finally admitted to an excellent facility which accepts Medicaid in Seattle, The Heritage House, run by Providence Elderplace. The facility is next to the Pike Place Market. The folks at Elderplace run an excellent health care program where they bundle the entire healthcare management package on behalf of the seniors, relieving them of the burden of having to interface with the complex medical monolith. For most seniors to manage their own care, they need an aggressive and alert person, usually a family member, to translate and keep straight all the conflicting signals and recommendations coming at the patient from all angles. Most seniors are having challenges remembering what happened 30 minutes ago. It is inhumane to expect them to be able to plan and schedule and make big decisions associated with their own health. The Elderplace/PACE program is a giant step forward. I am a bit stunned that it is such a well-kept secret.  More on that another day.

In the meanwhile, it did not take long for Bob to fail to adapt to his new environment. He immediately picked up where he left off in the paranoia department. The very patient and kind folks at Heritage House did their very best to reassure him and explain that his perceived threats were unreal. Bob called me repeatedly on my cell. I assured him that he was imagining things. He spiraled downward in about 2 weeks. At one point, he was placed on a suicide watch. When I went to pick him up on a Sunday morning, he was not in the lobby and I could not get into the place or call him. I initially thought he was being fairly inconsiderate, but then recognized that he had bigger, if imaginary, fish to fry.

Apparently Bob felt that I did not support him in his imaginary battle with a fellow resident. So then he told a social worker at the house that I had man handled him almost 2 years before. This is a mandatory report incident, and the social worker had no choice but to report me to DSHS/Adult Protective Services for investigation. At this point I was both hurt and angered that Bob would try to hurt me like this. He was basically endangering my business and livelihood. There are 65 other people in my firm who depend on this company for income and support.

So I am now struggling with a few things. One is that I am seeing what most folks do not see or choose to look past. That is that there is a large population out there in our society who are just plain missing the psychological boat. Bob is one of the lucky ones because he is a part of a larger support system that is obliged to not turn their backs on him. But what about the ones who did not have the good fortune to work for the government back in the 70’s for a few years. I see them on the streets as I commute to work. Many of them lie in a place out here called White Center. The more fortunate folks just shake their heads, what a shame. There is a gross inequality out there. While the resources are limited, no one has the stomach to publicly state that with limited funds, random luck is not a fair way to distribute the limited funds. Some of these folks can recover if they receive proper treatment. Some will never recover or be anything other than a large drain on the limited resource pool. Politicians and public policy makers run from the problem. Wading in to this pool will not get votes. It will only stir up confused anger and emotions. This is our democracy at its worst.

Knowing all this, and knowing that in spite of all this, that there are folks who choose to make a living attempting to help against all odds, is humanity at its best. They go unnoticed and unappreciated. I for one, would rather hear more about them than the likes of laughing stocks like Anthony Weiner.

 

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