Caring for the (Brain Tumor) Caregiver

I have great respect for caregivers of all shapes and sizes. My wonderful sister was my caregiver when I came home from my first brain tumor operation. She was patient, attentive and gentle.

She did all that in spite of the fact that I was a mess: I had trouble walking, my short-term memory was reduced to about a nanosecond and nobody in their right mind would let me near a stove. Said differently, she was an angel and I was incredibly lucky.

In a month or so, though, I became nearly self-sufficient – so much so that my wife could leave me at home alone with huge worries.

Not all brain tumor victim caregivers are so lucky.

If you or your caregiver is not so lucky, I think you’ll find the American Brain Tumor Association’s “Caregiver Resource Center” section particularly useful: http://www.abta.org/brain-tumor-treatment/caregivers/
 

It’s got information on:

• The Impact on the Family Unit
• Helping the Children and Teens Cope
• The Role of the Caregiver
• Managing Physical Symptoms
• Managing Cognitive Symptoms
• Caring for the Caregiver
• Getting the Help You Need
• Safety at Home
• Tips for Extended Family and Friends
• Navigating the Health (USA) System
• Caregiver Terms and Worksheets

And, just as importantly, it’s got caregiver videos: http://www.abta.org/brain-tumor-treatment/caregivers/caregiver-videos.html  The videos are honest, raw and informative.  Please don’t underestimate the importance of these videos. Just like brain tumor support groups for patients, I find that connecting caregivers with other caregivers, somebody to talks to who really understands your problems, provides a world of good.

“15 Things I Wish I’d Known About Grief”

If you’re a brain tumor victim, caregiver or friend, you know about grief. That its debilitating, all consuming, mind-numbing and all too hard to shake off easily.

Blogger Teryn O'Brien wrote this list which resonated nicely with my own feelings and I thought others might find it helpful. Here’s her first five:

1. You will feel like the world has ended. I promise, it hasn’t. Life will go on, slowly. A new normal will come, slowly.
2. No matter how bad a day feels, it is only a day.  When you go to sleep crying, you will wake up to a new day.
3. Grief comes in waves. You might be okay one hour, not okay the next. Okay one day, not okay the next day. Okay one month, not okay the next. Learn to go with the flow of what your heart and mind are feeling.
4. It’s okay to cry. Do it often. But it’s okay to laugh, too. Don’t feel guilty for feeling positive emotions even when dealing with loss.
5. Take care of yourself, even if you don’t feel like it. Eat healthily. Work out. Do the things you love. Remember that you are still living

You should know that Teryn describes herself as “…the blogger behind Identity Renewed, which placed #36 out of over 350 blogs nominated in a recent Christian Piatt/Patheos.com vote for top Christian blogs.”

Here’s a link to her “15 Things I Wish I’d Known About Grief”: http://identityrenewed.com/2013/11/21/15-things-i-wish-id-known-about-grief/

John

PS – While I try to keep this blog non-denominational or overtly religious, I felt that almost anybody who is grieving would get something out of this list.