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.
Thank you for sharing
your story!
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