Tuesday, June 7, 2016

Everyday Inspirations #3

Today we speak to Ms Norma and her family about end-of-life care decisions and what it means to live life to the fullest. We hope that sharing their story will help others begin to have these important- yet often overlooked- conversations with their own loved ones.

At 90, Ms Norma was diagnosed with uterine cancer during the 2 weeks that her husband, Leo, was dying. Faced with treatment options or a stay in the local nursing home, Ms Norma chose instead to embrace life, embarking on an indefinite road trip with her son (Tim), daughter-in-law (Ramie) and their dog (Ringo). In the 9 months since, they have travelled to over 60 different campsites across America, and their story has inspired countless others. You can read about their adventures here.

 "SMILE!"- Image by Driving Ms Norma

Q1) How did you broach the topic of end-of-life planning with Ms Norma?
Tim and Ramie: We were scared to death to broach the topic. Every summer we would drive across the country to visit with Leo and Norma for a few weeks. Each time we talked about how this was going to be the year to talk about their wishes and the reality that someday they wouldn't be able to live independently in their rural home. 

There was always a to-do-list when we arrived. We would trim trees, power-wash the deck, make repairs. We would do all of these things and then it was time to go. We would put the talk off for another year.

It wasn't until we arrived to an absolute crisis that the topic was really talked about. Leo was dying and Norma had a large tumor, before Norma was ready to talk about it. 

We had not received Norma's diagnosis yet, but had a feeling it was coming when we finally brought up the topic at the kitchen table. 

Q2) What went through your mind in making your decision?
Ms Norma: I knew I couldn't stay at home by myself without Leo and I didn't like the idea of going into a nursing home. When Tim and Ramie asked if I wanted to come along with them, I thought that would be best.

Q3) What does having a good quality of life mean to you?
All: We all enjoy good food and being outdoors. We also like to see new things and are interested in the diversity the world has to offer. Now that Norma is not experiencing the side-effects of the many medications she was previously taking, her quality of life has improved tremendously. 
"She lives in the present moment and has taught us to do the same."
Enjoying the view at Niagara Falls Canada/ USA

 Tim and Ms Norma take a walk

Getting her feet wet at Hilton Head Island Beach
- Images by Driving Ms Norma

Q4) In your opinion, what is the best way to go about doing end-of-life planning?
All: We certainly are not experts in this area. This trip came about in a panic to do something that made the most sense to our family. We have learned that our story has helped other families start that difficult conversation much sooner than we were able to. With that said, the circumstances of every family are different and can change at the drop of a hat. If end-of-life talk becomes part of a normal conversation way before anyone falls ill, it will likely be much easier to modify the plans when the time comes. 

Q5) How did the medical community react to Ms Norma’s decision?
All: That is an interesting question. One of Norma's doctors begged her to undergo the standard treatment for her type of cancer, saying "Don't you want to live to be 95?" Another doctor first laid out the standard treatments (surgery, then chemotherapy and radiation in some order) assuming that we would make an appointment for surgery upon leaving his office. Once Norma told him she wasn't doing anything for the cancer and instead was traveling with us, he immediately encouraged her and said, “As doctors, we see what cancer treatment looks like every day: ICU, nursing homes, awful side effects. Honestly, there is no guarantee she will survive the initial surgery to remove the mass. You are doing exactly what I would want to do in this situation. Have a fantastic trip!”

Since our story has gone viral we hear from medical professionals every day. They are all in support of Norma's decision and wish that more elderly patients would make similar choices for themselves.

Q6) What kind of support would you have liked to have gotten from the medical community?
All: It amazes us that the choice of doing nothing is not offered. It takes a strong person with a medical advocate to overcome the pressure to continue to treat a condition, especially when the treatment could very well lead to a much poorer quality of life. 

Q7) How has Ms Norma’s condition been since hitting the road? 
Tim and Ramie: We have taken her off all her medications (there were several) with one exception (thyroid medication.) We have noticed an increase in her energy and her brain function. She had many side- effects that impacted her quality of life that have now gone away. She is quick to smile and is in no pain.

 Getting a kiss at Georgia Aquarium

  Giving it a go at NC Therapeutic Riding Center

Tim suprises Ms Norma with a lobster
- Images by Driving Ms Norma

Q8) What has been the most rewarding part of your journey thus far?
All: Never in our wildest dreams did we think anyone would care about our family's simple solution to a common issue. Many people take in their parents at this stage of their lives. Our home just happens to have wheels. 

We started a Facebook page so that our friends and family would know where we were in the country. We have since gone viral and we hear heart-warming and heart-wrenching stories from our many followers, and they also give us love and support. 
"People from all over the world are now saying "yes!" to living, not just to life. That is rewarding."

Q9) Do you have any regrets?
Ms Norma: Oh, no. I can't think of anything.

Ms Norma fulfills her dream of riding in a hot air balloon!- Image by Driving Ms Norma

Q10) Looking forward, where do you think Driving Ms Norma is headed?
All: Right now Norma intends to travel with us for the remainder of her days. She would love to see the redwoods in California, so we will probably head in that direction later this year.

Q11) Do you have any advice for others who are facing end-of-life care decisions?
All: We certainly aren't in the business of giving advice. We believe this is a very personal decision and we hope that everyone has the strength to be clear about the ones they make. 

In our case, we supported Norma and didn't try to change her mind. Having us by her side when she was talking to the doctors gave her the strength to stand up to them without feeling pressured to do something she really didn't want to do. She knew we had her back, if you will.

Many have shared stories of their dying loved-ones who made the choice to artificially extend their lives just to please loved ones. Their final days were neither peaceful nor natural. The writers tell us they wish they had not pressured them to fight when those extra days, weeks or months were filled with pain, discomfort and strife. Fortunately, we were all on the same page.

Mother and son climbing Cadillac Mountain in Acadia National Park- Image by Driving Ms Norma 

Thank you for sharing your story!

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