This book, Connecting through Compassion: Guidance for Family and Friends of a Brain Cancer Patient about personality and behavior issue just came out and it sounds as if it would be very helpful.

The months before Michael’s diagnosis he was not acting like himself. The personality and behavioral changes started in June of that year (he was diagnosed in September). Even after his diagnosis and treatment he started to behave strangely. Many times I was not prepared for it–like the time we went to the grocery store and he started yelling at me because I moved him away from the salad bar where he was eating everything with his fingers. Everyone in the store was looking at us.

Another day, same store, I was trying to park and he suddenly jumped out of the car. I pulled into the space designated for pregnant women and received a lot of nasty looks when I jumped out (obviously not pregnant) and chasing Michael around the parking lot where he was walking in front of cars.

Another time I left the car for one minute and put all the child locks on so I could run in the store. I told him I’d be back in one minute. When I returned he was looking terrified and I said, “Oh honey, what’s wrong?” and he said, “I didn’t know where you were.” It broke my heart (still does when I think of it). He became so dependent on me but at the same time would rail against his dependency by taking off in a store or refusing to take my arm when we were walking to the radiation unit. I actually liked it better when he was angry. It wasn’t often but it didn’t break my heart like it did when he seemed like a terrified little child.

After he was in treatment he would come home and sleep on the couch and wet himself. He would not wear anything, being a proud and stubborn man. He would often be walking and not realizing he was going to the bathroom in his pants. Sometime I would be cleaning him up and he would “come to” and be as lucid as ever and be horribly embarrassed. I always assured him and then one day my son had to help me and Michael was in tears later that night that one of his kids would need to do that. I told him that he had taken care of all of us for years and now we were taking care of him. But he didn’t want us to.

After he was bedridden he didn’t get upset over the adult diapers anymore but sometimes when I was cleaning him his eyes would grow wide when I asked him to turn over. He didn’t have the strength to turn over so I would take his hand and put it on the railing of the hospital bed and ask him to hold on. Many times he would reach back to interfere with my care of him. One time when he had diarreha, I kept putting his hand back on the railing and he would keep putting it behind him. I started to feel anger and then I just sat there and cried. I had no idea what to do. It would take me almost 2 hours to get him cleaned and all the bedding changed. Hospice told me to call them if I was met with these situations on the weekend, but I never did. Some days he would seem as if he completely understood everything that was going on and those were the days it was the hardest. Because he didn’t want to be sick anymore and he didn’t want anyone caring for him.

The worst part was definitely before diagnosis. I thought he had early Alzheimers and all I could picture was 30 years with someone who had never listened to anyone about anything. When I talked to him he looked as if I was looking through him. His boss told me the same thing. But his driving, always aggressive, had become downright dangerous. I’m grateful he didn’t kill anyone, but he was getting speeding tickets and hiding them from me. Something he never did (he always got speeding tickets and many times came close to losing his license for 30 days).

He was also suddenly surly and argumentative, two things he had never been with me. And because he floated in and out of these states of mind, I could never tell what was going on.

The strangeness started sometime before Father’s Day. His birthday was May 26th and he was perfectly normal and functioning and wonderful at that time as he had been for Mother’s Day. Mother’s Day had been especially nice and I’m glad I have photos from that brunch. His birthday was also spectacular. He never liked anyone to fuss about him but we all did that year, on a few separate occasions, and he loved everything. The boys took him golfing and went fishing with him. I took him to a play and dinner and surprised him with a limo ride on the way home.

For Father’s Day he was going to go golfing again with the boys and they reported that he had been acting strange all day. The next few weeks he took a terrible dive and became almost unreachable through conversation. He was calling me and Gina about 30 times a day, never remembering what he was going to say. But in person he was not present at all.
He was slowing down and doing bizarre things like running the lawn mover for 10 minutes and quitting (we have about 2 acres of lawn). The list kind of goes on and on. Then in the middle of July he became his old self again only to deteriorate the beginning of August and then rebounding again the end of August. His seizure was on September 16th.

While this book would not have helped that summer it would have definitely helped in the few months after his diagnosis.

As I’ve said, my fervent hope is that he really didn’t know what was going on for the rest of the time, but he knew we loved him. And that is what matters most.

And now it seems much simpler to see what was going on, but at the time, after his diagnosis and before he was bedridden, I really really could have used this book. So if you need help understanding the personality and behavioral changes, please take a look at this book.

Connecting through Compassion: Guidance for Family and Friends of a Brain Cancer Patient