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.

“What I Have Learned In the Six Months Since My Brain Tumor Surgery...”

On the whole, I’ve found brain tumor bloggers to be particularly thoughtful and introspective. In the throes of surgeries, money struggles, physical struggles, mental struggles and a host of other issues, they often find time to write poignant, insightful postings that make me stop and think.

Here’s a link to an terrific ABTA Inspire posting that explains what the writer has learned and a whole lot more. Some of her insights include the following:

• Always be kind to people because you do not know what they may be dealing with beneath the surface.
• Technology is awesome.
• People are fundamentally good and kind.
• Some people are surprisingly unkind to those who are facing adversity.
• Sometimes an eyelid twitch is just an eyelid twitch, or is it?

Here’s a link to the context and feelings and reasoning behind this wonderful posting: http://www.inspire.com/groups/american-brain-tumor-association/journal/what-i-have-learned-in-the-six-months-since-my-brain-tumor-surgery/?ref=as&asat=187952100   

PS - To be clear, I didn't learn these important lessons - this unidentified brain tumor survivor did.

Curcumin/Turmeric as a supplement

Here’s a link to a good discussion on taking curcumin/turmeric as a supplement on the Inspire website: http://www.inspire.com/groups/american-brain-tumor-association/discussion/curcumin-turmeric-as-a-supplement/?ref=as&asat=175924059

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“…She left after hearing the news”

This post on the Inspire.com website is so sad, made me so upset and depressed I just had to share it. 

“I just had my two year check-up. The good news is that I wasn't having surgery the next day like last time. But a smaller new one popped up in a bad spot that no surgery or anything can be done because of the location. Nows the part I'm just lost for words, everything. My wife was told and said she couldn't help me because she couldn't take the stress or see someone hurting. So she left.”

You can read his entire post and the heart-felt follow-up comments here: http://www.inspire.com/groups/american-brain-tumor-association/discussion/lost-for-words-she-left-after-hearing-the-news/?ref=as&asat=171285500

FYI - you need to register with the site (free) to read all this.

John

PS - I don't know if this is the right visual, but I'm guessing this guy feels abandoned right now.

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Got Brain Tumor? Get Back to Work! (Maybe…)

Getting back to work after a brain tumor diagnosis is, well, a bit complicated. So folks can return to work. Others can’t and prefer to focus on rehab. Some want to return, but need a less demanding job.

The Inspire website has a good discussion thread going on all this along with their tips on how to approach your work life after a brain tumor diagnosis: http://www.abta.org/brain-tumor-treatment/brain-tumor-support/returning-to-work.html

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