Parkinson’s and Guilt

I Am The Polar Bear

Don't let guilt keep you confined.

When my daughter was young there was a polar bear at the Roger Williams Zoo in Providence, Rhode Island.  They had just created this big beautiful polar bear habitat. All the bears were splashing, romping, doing polar bear things. All except for one. That bear would walk four paces, nod its head, turn, walk four paces, nod its head, turn, over and over and over again. Never deviating from its pattern. never joining the other polar bears.  

I later found out that the bear had been rescued from a small cage in Alaska where it spent the first 20 years of its life. It had spent so long pacing in a tiny cage that even when it was given the opportunity of more freedom he couldn’t stop.

I am the Polar Bear (Written April 2017)

I am the polar bear from Roger Williams Zoo. Here’s why.  Like the polar bear, I was frustrated at doing the same thing day in and day out for Mom. Showing up every day, knowing that she was getting a little bit worse and there wasn’t a single thing I could do to change it. I felt guilty all the time. I felt that if I wanted time away for myself, I’m letting Dad down. How could I go out and have fun when Mom’s trapped at home? And how could I leave Dad alone to take care of her? So, I would pass on whatever event was happening. It was my choice to decline, but I would be angry and frustrated about it. I just kept pacing in a cage that didn’t even exist.

Now that she is gone, I’m out and about and missing the small cage that had become our lives. There were so many times when she drove me so crazy I could have happily snapped her neck and tap-danced to the electric chair.  I’d give anything to hear her whine at me one more time.

It’s Scary Out There Without My Cage

Slowly I’m getting out and about, leaving my cage behind.  My daughter helps with that a lot. She makes me go out and we’ve been painting, shopping and trying out all the new hard ciders in Knoxville.  There are a lot. It may take a while to sample them all.

My first instinct, when asked to participate in various events, is to say no, I’d love to but I can’t. (That would be the polar bear talking.) Then suddenly it occurs to me that I can, there’s no reason not to.  I will look at Tiffani and say, “I am not the polar bear, let’s go do it!”

Next week for the first time in what might be years I actually have things on my calendar. Haircut on Tuesday, grant writing class on Wednesday and a Board Meeting with Historic Ramsey House on Thursday. When asked to help out Ramsey House with their grant writing, my first thought was, “I can’t.” My second thought was, “why can’t I?”. So I did. I am not the polar bear anymore. (OK, mostly I’m the polar bear but I’m working on it.)

That was Then, This is Now (Written April 2019)

I wrote the section above shortly after my Mother’s death in 2017. The first year was very hard. All of the routines my father and I were used to were gone and we spent months trying to find a new normal.

He started to go to church again and I even got a part-time job (at the Historic Ramsey House of all places.) I still went to Dad’s house every day, but without the stress of dealing with Mom’s dementia, it was a more relaxing, companionable situation. If I had to run into town, I would. He would come along and we would make a morning of it, complete with a trip to Sonic.

Then last Summer, on his 80th birthday, Dad found out he has rectal cancer. He wasn’t eligible for surgery due to his age and past surgeries. That and the fact he would have to be put on a catheter and a colostomy bag afterward made that choice impossible. Radiation was also out due to his prostate cancer and radiation treatment 20 years ago. Apparently, there is no double dipping in radiation.

So Chemo it was. The doctors said it’s not a cure but more palliative. If it just gives him relief from the abdominal pain, then it would be worth it.

The Polar Bear Returns

So, the Polar Bear is back. My Daughter and I had to cancel a birthday trip because Dad was in the hospital. Going out of town is very difficult. I had to go to Florida for my in-laws 50th anniversary last August. My sister stayed with him, which was nice. I didn’t have to worry about him for a whole week. Then on the way home, he ended up hemorrhaging and ended up back in the hospital. I don’t think my sister is ever coming back. (It ended up that the bleeding was a good thing, evidence that the tumor was shrinking. Who knew?)

It’s nice to see that some things just don’t change. The guilt is strong with this one. (Thank you, James Earl Jones) When I’m at work and he’s home alone, I worry that he’s alone. What if he falls again? I keep finding out after the fact that he’s fallen in the bathroom or kitchen. Easter Sunday he almost face-planted at church because he stepped on a pebble. Luckily I was there and grabbed him. I swear I want to wrap him up in bubble wrap. (Both for the protective layer and the amusing noises if he falls.) When I’m hanging out with him, I’m anxious about not getting stuff done at work. Wherever I am, I have something I can feel guilty about.

Isn’t it funny how quickly we go right back into caretaker mode? It’s almost like I never left.

Just Keep Pacing Your Cage

So I pace my cage again. I can put off my needs for a little while longer. Truthfully, there’s nothing I’d rather do. Without the added drama dimension of dementia, it’s so much easier this time around. And maybe I learned a thing or two taking care of Mom.

Dad just finished his 12th round of Chemo. Dad was found NED (No Evidence of Disease) after 6 treatments. They gave him 6 more treatments just to be sure. We’ll find out if it’s still gone tomorrow after his PET scan. If it is, then we no longer have multiple trips to town every week, just a scan every 3 months. The Polar Bear is watching.


Well, the good news is, the tumor is still shrunk. The bad news is, chemo needs to continue to keep it that way. Indefinitely. Instead of the hoped for one and done, we’re looking at a permanent situation.

Good thing I’m the polar bear.

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