Coping With Caregiving

It began with a 1/1/06 GI bleed, emergency surgery, and no one had any idea the reason he was increasing his usage of NSAIDS was due to brain cancer On 3/27/06, when he was coming to meet me, he came walking into a mall in a grand mal seizure I called 911 and within 2 hours, I was told he had inoperable brain cancer - oligodendroglioma, which later had the additional terms of anaplastic astrocytoma added to the diagnosis.

He had chemotherapy for 6 weeks while on Temodar. He held up well under the treatments, but when they concluded, he was diagnosed with a secondary tumor, glioblastoma multiforme grade 4, which had grown the size of an egg while under the previous treatment. He was an aerospace engineer, a brilliant man, and the depression and devastation was complete that he was losing his brain.

He had surgery to remove the second form of cancer 9/8/06, continued on the Temodar, and low and behold the cancer continued to grow. He then had a hydrocephalic condition develop in late December 06, and the doctors opted to install a shunt to drain the fluid on 1/5/07. He has continued to decline since that time and is now completely bedridden, and can barely speak. He is amazing how much he understands though.

I am taking care of him everyday. He has a catheter at this point as he cannot get out of bed, and he basically cannot move any part of his body. He is still eating and drinking, though choking is becoming more of a problem.

The doctors have never been able to give us a prognosis. Of course, by now, we realize since he is no longer under treatment, it is only a matter of weeks to months. More information at the outset would have been so helpful to both me and him. The hardest part is having to learn everything for ourselves. The medical community in our area has been less than forthcoming with information that could have been very helpful to us.

It’s been such a tragic journey — I would not wish this type of suffering on anyone. I thank God for every word out of his mouth at this point, and I hope God will be merciful with him and give him a peaceful death.