JOAN’S BLOG – WEDNESDAY, OCTOBER 8, 2008 – NOW I AM FRIGHTENED

As I mentioned in yesterday’s updated notice, our neurologist called me with the news that Elan was dropping Sid from the BAP III trial due to slight abnormalities in his latest brain MRI. Elan is very concerned about the risk of bleeding into the brain, and is dropping anyone from the study whose MRI shows any abnormalities. I have no argument with that – I am thankful for their prudence.

I thought my writings had covered all of the emotions experienced by me and all spouses of Alzheimer’s patients – sadness, depression, anger, loneliness, thankfulness for whatever closeness couples are still able to share - until yesterday’s phone call, when fear gripped me for the first time since I heard the definitive diagnosis.

As I had never been in denial about Sid’s Alzheimer’s diagnosis and its long term ramifications, I also THOUGHT I had not placed too much hope into this trial until the phone call from Dr. S. I felt my stomach drop, because Sid actually had been showing small improvements in memory since the first infusion. Rather than envelop me in a cloud, fear descended upon me like a bomb. Everything I have read from our members’ posts about blank eyes, incontinence, incapacitation in every aspect of cognition and abilities, swirled through my head at once. I thought – “The downturn could come at any time, and it could move quickly.” I was terrified at the prospect of entering that territory. Maybe I thought we could prolong it enough, so he would die of something else, long before he had to endure end stage Alzheimer’s Disease. Maybe I am being selfish – I am the one who does not want to bear the pain of watching him endure the end stage of this dreadful disease.

Of course, I told him that there would be other drug trials. Our neurologist is at the forefront of every study being conducted, and he is always looking for one that will accept diabetics such as Sid. But the truth is the truth – my feelings are what they are – I am terrified of a quick downturn. I guess the only recourse is for me to take my own advice and enjoy every single good day we manage to have with each other before the inevitable occurs.

©Copyright 2008 Joan Gershman

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