When there is a rock in our path, we can stumble over it or use it as a stepping stone.

Tuesday, March 12, 2013

Guest post from Caregiver

Being a Caregiver Transformed My Life

My life was happy and brimming with excitement in November of 2005.  We had been in the process of adjusting to life with our newborn, Lily, when we received some devastating news.  My wife Heather was diagnosed with pleural malignant mesothelioma on November 21st, and our lives were changed forever.  Heather began fighting cancer, and I became her caregiver, a role I was never prepared for, but I knew I had to learn fast.

Heather and I were both extremely worried at what her diagnosis would bring, and if she would survive the illness or not.  Our doctor informed us about mesothelioma and he gave us choices for Heather’s treatment options.  We could choose between a regional hospital that had an excellent reputation but did not have any experience in dealing with this type of cancer, or we could go to a local university hospital.  The third option was to go to Dr. David Sugarbaker in Boston.  We chose to go to Dr. Sugarbaker for Heather’s treatments because he was a renowned expert in the field of mesothelioma treatment.

When we heard our treatment options for Heather, she nearly came apart.  I could sense her panic and worry and I immediately told our physician we had to get to Boston as quickly as possible to begin making every effort to get Heather better.  I really had to come face-to-face with my own insecurities of whether or not I had it in me to maintain a job, be a dad to Lily and to take care of Heather to the best of my ability.

Luckily, I didn’t have to walk this path alone.  I will forever be grateful to the many friends and family members who went above and beyond to help us out in numerous ways.  We were offered everything from kind words of encouragement to much needed financial support. Without a doubt, we could not have survived without their help.  My strongest advice to anyone in our situation would be to accept every offer of help that comes your way, and don’t be too proud to ask for it.  This will without a doubt be the toughest challenge you’ll ever face, there is no need for you to face it alone.

We are now past all the treatments and Heather was able to defy the odds against her.  She beat mesothelioma, a rare feat accomplished by far too few people.  Its been seven years since her mesothelioma diagnosis, and she remains cancer free to this day.

Two years later, I went back to school to study Information Technology, and I know that my experience being a caregiver gave me the confidence to take on this new chapter in my life. I graduated at the top of my class and had the honor of giving the graduation speech.  I never thought my life would take such drastic turns, but we learned a lot about hope and facing challenges in these past few years.  During my speech, I told my classmates what my wife had taught me – that within each of us is the strength to accomplish the impossible, as long as we never give up hope and always believe in ourselves.

Monday, March 11, 2013

more relaxed and creative

I was contacted by a caregiver who asked if he could publish a guest post on my blog.   I readily agreed and will be posting his update in the future (having a bit of technical difficulty with his post atm).

I wanted to first give an update on  how I am doing.

I am still working on healing the damage caused by the osteoporosis medication but will hopefully not need another endoscopy.    I need to talk to my doctor about alternative osteoporosis treatments though since my body can't handle standard ones and I am now down to 4' 7" (from a little over 4' 10") because of my severe osteoporosis.

In January  I began to notice difficulties labeling colors.  I can easily tell if something is red or yellow or blue, for example.   However, I am finding myself struggling to distinguish between colors such as teal and aquamarine, bronze and gold, light brown and tan, maroon and magenta, etc.   Since my vision is also getting foggier, I really don't know if this is eye or brain, or perhaps a combination of both.  I have ordered new glasses, if all goes well, I will be getting them tomorrow and will see if they help.   Based on what eye doctor said, I should see a significant improvement with the new glasses as my old prescription was way out of date.

As to meds, I am continuing to take both my Exelon and 3 tablespoons a day of coconut oil.    I'm not sure if the coconut oil is doing a lot for the dementia but it definitely is making me healthier as it does a good job of suppressing all cravings for sweets.   I am now fully back to a very healthy vegan diet and have a lot more energy than I have had in a long time.

I am also enjoying life even more now because as my memory and math usage continue to slip, I am finding that the ultra planner, logical side of me is very slowly moving a bit more to the back and my creative side (something I have back burnered most of my life) is becoming more prominent.   

Not only am I exercising and meditating daily again, but I am also spend more time doing creative things now and finding myself much more relaxed.    I feel very content overall.  I have very little desire to push myself to do lots of puzzles and games, etc. to try to keep my brain forming new connections anymore.    Somehow, I seem to be right where I should be right now.

My feeling is that as long as I am still capable of doing the things I need to do daily,  then I am doing as well as I need to be doing and don't need to (nor do I have any desire to) push myself to regain what I am losing.   Perhaps that is the dementia taking away my desire to fight it, I don't know.   All I know is that I feel like this less driven, more creative phase in my life feels like right where I am supposed to be right now.   Not something to resist or try to "fix."