Tuesday, July 8, 2014

Ted’s Story: Living with Alzheimer's

The first manifestation of something being amiss with my memory was in late 2004 when I began to have problems remembering some details relative to my job.

My position as a computer systems analyst in a major Chicago area hospital required that I support the patient document imaging system, the patient registration system and the materials management system, which also included finance and accounting. These systems were not linked and each had individual characteristics, which I had to account for in the diagnosis and correction of problems, as well as installation of upgrades.

Having noted this memory issue, I compensated by taking copious notes about problems and writing detailed procedures for system operation, as well as problem diagnosis and correction. This helped the memory issue, but slowed me down as I could not always remember steps that were easy for me to remember in earlier times, which required me to stop and look up information in my “cheat sheets.”  

Some users noted that my verbal responses to their questions were not always immediate, and that they saw me referring to notes to find some information. They did not bring this to my attention. My memory issues had been mentioned by some users to the director of information systems, who called me into the office of my supervisor, who served as a witness to the proceedings. Unfortunately for me, her response to the complaints was to terminate me immediately, and I was escorted out of the building. 

I was very surprised to say the least, and basically said nothing at this point, not that I had much time to do so as I was escorted out very quickly. When my wife, also a Lake Forest Hospital employee, later talked to the Director of Human Resources about my issues, she was told that my termination was due to performance issues and not any disease, as the issue did not arise after an official diagnosis was made. If I had almost any other physical impairment or disease, such as a stroke, heart attack or amputation, I would have been eligible to collect disability from the hospital.

Having noted these issues, my wife and I made contact with the Rush Alzheimer’s unit in Chicago, and I was evaluated there in February of 2005. The result of these tests indicated that I did have memory impairment, but they would need a follow up test in six months to confirm a diagnosis of Alzheimer’s. Thus, I was evaluated again the following August, and the tests showed a decline from the February results, which led to a diagnosis of Alzheimer’s. 

For a time I worked as a greeter at Wal-Mart, where they were very understanding about the Alzheimer’s. But subsequent issues made it harder for me to perform this job as my memory was pretty erratic. I was now retired, whether I wanted to be or not.

I must say that Social Security was very understanding, and at the first appointment, I described my issues and was approved for Social Security Disability. If not for this, we would have been in severe financial trouble. I will be eternally grateful to Social Security for their understanding and fast assistance. 

However, I was turned down by the VA which, as a veteran (Vietnam era), came as some surprise to me. Oh well, we are still pursuing this avenue. This does highlight a problem that there is no consistent approach to Alzheimer’s by the various entities with which we must interact. 

Due to the income decline noted above, we had to sell our home and move to more modest housing. Also, my interaction with our grandchildren is different now as they know that I am different, but are not sure just what the problem is. I am also concerned about my higher level of frustration and memory lapses. I am no longer comfortable taking them on road trips to various parks as I did in the past for fear that I will have a memory lapse and forget them or somehow endanger their safety. 

Now I am reluctant to go places alone, and my wife has retired early to be with me at all times. This is actually a benefit for me, as I treasure her company above all others, but it was another economic loss for us. Additionally, I have few new memories to speak of as recent events just do not stay in my mind on a consistent basis. As a result, I feel that I am robbed of any future because while I will live in it, I will be unlikely to remember it.

I do believe that our country can do anything, if properly motivated as was the case in the space race and World War II for example. When we are fired up, nothing can withstand the onslaught of American vigor and know-how. We just need to focus our efforts to solve any issue.

Alzheimer’s is a sleeping giant and as the baby boomers age, the issue will impact society in a geometric progression due to the great increase in those suffering from this disease.  

Finally, I could not write this without the help of my wife. Yes, I am educated and was always very successful in academic endeavors, but now, I can’t consistently retain short-term memories without someone to keep me on track with what I want to say.

My wife is now my memory, and I can write this only with her ability to remember parts of my life that I am getting fuzzy about. In some cases, I can forget what I was trying to say while typing the sentence, so I tell her what I was getting at, so she can help if it fades out as I type it.

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