LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

-------

Wednesday, May 28, 2008

Neuropsychological testing

I guess that neuropsych testing isn't very reliable on college professor types. John's memory has always been bad and has gotten significantly worse in ways that really worry me. But in the testing he scored high average in new verbal memory and superior in new visual memory. The only thing he scored impaired on was basic spatial. He scored superior on higher language, average to low average on attention. His results were very randomly scattered from average to superior, but ADD testing from more than 10 years ago makes it clear that he was that way then too.

After the psychologist presented the results to us, I burst into tears and said: "Then why have I had to take over all the planning and organizing?" We talked about some examples and she said she could see it is frustrating for me, I should try to remember that John can't help it, it is the disease. I said "these test results seem to say he can help it." She said "No, no, no,..." without really explaining how she reconciled the test results and our experience (John was supporting me that it has gotten significantly worse in the last year). In part the psychologist was saying that he already had problems functioning in the areas I am frustrated about so it didn't have to get much worse to be a big problem. But the tests don't even show those problems he already had.

I guess I think he outsmarted the tests. Or perhaps it is an example of the fluctuations that are characteristic of Lewy Body Dementia or the phenomenon I have seen called "show time" when the person with LBD can rise to the occasion and look good in the doctor's office or for company when usually they are a mess. John presented himself as sociable and having a good support network when I see him increasingly isolating himself except for three friends and me.
Marc asked in the comments how John was diagnosed. Very much just by the clinical judgment of the doctor--clear Parkinson's symptoms plus REM sleep behavior disorder. John reported episodes of confusion, I reported difficulty with complex tasks, and in the doctor's office that day he couldn't spell a four letter word backwards. Is it dementia at this point? Not the way the term is casually used, but if dementia is defined as cognitive impairments that interfere with social or occupational functioning then it is--John could barely keep up his job through the end of the semester. Is it Lewy Body? He definitely has Parkinson's symptoms as well as REM sleep disorder and increasing problems with memory, organizing, and planning, so even if some doctors wouldn't diagnose it yet it is headed in that direction.

I'm very upset about the testing--even now the next morning the tears come up in my eyes when I think about it. I feel like the objective tests say everything is fine, when my experience is that we no longer have a partnership, I am now having to be a caregiver. I'm having to do all the thinking and planning and organizing for us as a family and for John with doctors. I'm afraid of being accused of overreacting. I'm afraid no one will believe me because the tests show something different. Not being believed is a particularly sore point for me. More practically, I had hoped the doctor would prescribe Alzheimer's medication that would help, but since he wanted the test results first will he decide medication is not needed based on these test results?

The other thing that upsets me is that every strategy the psychologist suggested was something I have tried to get John to do for years with no success. He won't make lists of things that need to be done. She told him that no way should he be walking around the house trying to get things done while listening to books on tape or All Things Considered on headphones, that he can't multitask. The only compromise I've ever been able to get him to make on that is to turn it off when I come into the room. We didn't talk today about sleep but that is another area where he has terrible habits he has been unwilling to change--these days when I get up at 5 am to go swimming I usually find him asleep sitting upright in a kitchen chair in front of his computer (never having come to bed). The sleep doctor is going to get an earful from me in July.

5 comments:

Anonymous said...

Stella here... I think one of the most cruel side affects of LBD is the false hope the caregiver constantly lives with. "He's so normal". Sure he is. Come live with us for a week! Don't we wish with all our heart and soul this is not real. Pam, who knows John best, you or the testing materials? But still you say, "What if". I'm sorry, so sorry, for this experience the two of you are living through. By the way, "Show time" is a real phenomenon, expect a let down afterwards.

Isis said...

I agree with Stella: trust your experiences here. Tests can be deceiving and deceived.

Joann said...

John (and you) are trained test-takers for decades now. One slice of time on a "test" is not reflective of his entire psychological situation. But you both have lots and lots of experience taking tests, so both of you would test well. This test will be a benchmark that will allow you to better see cognitive decline LATER.

Teaching someone with dimentia NEW habits (lists, tape recorder memos, etc.) is pretty much impossible. This is not a moment in life when people acquire new skills.

I would like to suggest you make a list of one or two goals daily, that John can check off. Leave it on the refrigerator or some place prominent on a white board where he can leave a note, "Called. No one answered; left message on answering machine." Stuff like that. It's still a novel thing that he may resist, but if you can form the habit now, it might stick with him as time progresses, and that way you've given him two or three prioritized tasks so he doesn't get lost in the small stuff.

It is hard to remember that the person isn't doing this to drive you ever loving insane at times, but it's not intentional. He wouldn't want this if he could have dodged it. I'm sorry it's so difficult.

Many people have been helped by the 36 Hour Day.

spouse said...

I remember just 1 year ago, being very frustrated by the fact that, in the Neurologists office, GW could count backwords from 100 by 7s without hesitation. but would have difficulty counting his daily cribbage game points. Another case of "show time" Whenever the DR. would ask "How are you feeling" he would reply "just great!" any problems? "No" However I would always hand the Dr. the computer page with the list of problems I had noticed so he could discuss those. After 19 years of playing cribbage every day, we have put the gameboard to rest. However when one of our out of town daughters comes to visit "show time" can revive his skills amazingly !!!
Di

Pauline said...

Oh do I know Show Time! Daddy was so good at it. No one believed he was as bad off as I knew him to be. It is so very frustrating because it does feel like they are faking it....If only they were...
Most doctor's know only the bare minimum about LBD; I always appreciated the ones that were at least honest about that.
Our Neurologist just finally told me to take Daddy home, there was nothing to do. Try the drugs, thet might help for a while.
I like joann's suggestion to make him a list. Daddy would "wash" the dishes every morning for as long as he could. He wanted to help out. Eventually small chores like sorting through the junk mail were his job.