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Monday, March 07, 2016

The log...March 7, 2016 - glioblastoma multiforme progression


We are currently continuing on a journey of loss and heartache. I decided to start a log here...in hopes of relieving some anxiety through writing about things. I wish that I had thought of doing this during my mom's illness last year. Perhaps what we are going through may even help someone else realize that they are not alone. I hope so.
On September 25, my mom passed away…after a lengthy illness that included congestive heart failure…colon issues…stomach issues…COPD…a broken hip…and numerous other problems.

 On November 3rd, my dad was diagnosed with a stage 4 Glioblastoma Multiforme tumor…which at that point was already the size of an orange (in area). Due to his advanced age (79 years old) and the size and extent of the tumor…he and his doctor and the specialists determined that the best course of action…would be no action. They told him that he would live another 3-4 months…we are now at 4 months and 3 days.

The first 6 weeks or so brought small, gradual changes. His short term memory went first (sporadically), then his balance (also sporadically). His ability to drive was curtailed immediately, due to the event which originally caused his diagnosis. He had gone to deliver a cake to the pastor. He never arrived with the cake, and after a frantic search, he was finally located, several hours later, at his brothers home. He had forgotten where he was going…and decided to visit his brother. However, he remained mobile, still attending church, interacting with family and friends, attending to customers in his RC hobby shop, and working in the yard. He was taken off of all of his previous medications except the one for reflux…hospice came in and prepared meds for comfort care…and a strong steroid was begun…which kept some of the memory and balance issues minimal for a while.

Over the course of a two week period, he began to experience nausea, had a couple of bad headaches, (both the headaches and nausea were controlled immediately with medication), and incontinence became an issue.

One evening he had a seizure, while eating dinner out with his wife and friends, and things have escalated since. After the first seizure, he was put on a seizure medication, which worked well for a while, then he had a very rough seizure one night, followed by two more the next night. Meds were increased, and although seizure activity seems to be controlled again…other symptoms have increased dramatically.

For the most part, he no longer recognizes us…with the exception of his wife. He is extremely confused now…unable to walk…his appetite is dwindling…no control now over bowels or bladder, and becomes agitated at the drop of a hat. He becomes obsessed with repetitive motion, and he moves back and forth between non-communicative and talking jags which make no sense…

A hospital bed was brought in last week, and installed in the living room, in front of the picture window overlooking the side yard, in order to make it easier to care for him during the night…and to allow him to rest during the day without being isolated to a bedroom. In the week since the bed was brought in, he has become unable to feed himself (except for finger foods) and will soon be bedfast. During the past 24 hours, he has begun to try to escape the bed….even though the side rails are up and locked. He scoots to the end of the rails and tries to squeeze between the rails and the foot of the bed. If he does manage to get out…he will fall…as he can no longer stand.

His agitation escalates quickly once it begins, and he is now on anxiety meds every 4 hours…and as needed when it begins in spite of the meds.

 

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