Tag Archives: end of life

Getting creative with dying

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John Evans/Freeimages

Thanks to those who participated in my caregiver survey. The OpenIDEO end of life challenge is going through its final review, and top ideas will be announced in the coming week. Regardless of the outcome, the experience has been educational and inspirational.

I spend quite a bit of time on this blog sharing my frustrations with the health care system, but the good news is there are a lot of compassionate, smart people out there who are working on solutions. They want to improve the experience of those nearing the end of life, the death process itself and the caregiver’s well-being.

The ideas generated in this challenge were truly awe-inspiring. Some of my favorite ideas included musicians writing and playing songs for those in hospice inspired by the dying person’s life. I loved this idea because not only would it offer comfort to the dying, but also would be a memento the family could keep forever.

I also was inspired by the “Leave a Wish” idea, which would allow you to leave any message you want for family members after you have died. It could be something like hiking to a favorite spot to mark a holiday, or making sure your loved ones fulfill their own goals, like writing a book or running a marathon. I loved the way this idea could allow you to connect with your loved ones even after you are gone.

Other ideas included green burial options, documenting a loved one’s life stories and encouraging greater discussion of end-of-life wishes.

There were so many wonderful, innovative ideas that I can’t go into them all here but you can check out the full list on OpenIDEO.

It’s reassuring to know that there are good people out there who want to make dying not something painful and miserable, but a final phase of life in this world that can be meaningful and inspirational.

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‘Driving Miss Norma’ inspires many

I have been following the journey of Norma, the 90-year-old woman who lost her husband and learned that she had cancer in the same 2-week time span. While that would drive many of us straight to our beds, Norma surprised everyone by saying she wanted to hit the road.

Her family is taking her on a trip around the country, and Norma is having the time of her life. She chose to skip a risky surgery, and cancer treatment that would have left her sick and exhausted, and instead live out her final days on a grand adventure.

Miss Norma

Miss Norma, via Driving Miss Norma/Facebook.

 

When Norma told her doctor of her plans, he responded, “Right on!”

The world agrees, and the Driving Miss Norma Facebook page has gone viral, with thousands of people around the world following her journey.

I love her attitude. And for those who think skipping treatment is “giving up” the only thing Miss Norma has given up is the misery of uncertainty. Yes, the cancer she has will likely kill her. But instead of sitting around and worrying about it, or obsessing over treatments that may offer false hope, Norma is doing exactly what someone with a limited time span should do: experiencing every last drop of life she can, while she can.

We don’t have to wait until we are 90 and have a terminal illness to live like Norma. Sure, we can’t all necessarily hop into an RV and tour the country, but we can start carving out time to focus on what is important to us, instead of what others think is important.

 

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On being mortal, from a doctor’s perspective

I watched an interesting Frontline special about end-of-life issues, from the perspective of a doctor treating terminally ill patients. The show featured Dr. Atul Gawande, who wrote the book, “Being Mortal: Medicine and What Matters in the End.” The book came out last fall, but I have not had the chance to read it yet. Another one added to my wish list, so many good books, so little time to read them!

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In the program, Dr. Gawande tracks other doctors and interviews them about their approach to end-of-life care. Because of some negative experiences, I sometimes unfairly assume that the typical doctor’s main goal is to prolong life for as long as possible, quality of life be damned. But this documentary highlights the emotional turmoil that doctors experience when they are forced to tell their patients that medically speaking, there is nothing else to be done and it is time to transition to palliative care. The doctors feel like they’ve failed their patients when they cannot heal them.

Some patients accept the bad news with peaceful resignation, others go into denial, and still others fight the good fight for too long. One of the saddest stories was of a young woman about to give birth who was told she had stage IV lung cancer. She gave birth with a collapsed lung and immediately began a harsh and toxic treatment regimen. Of course one can understand why, she had so much to live for! But her husband now regrets the time she spent so ill from the treatment, which did nothing to extend her life. He wishes they had spent more quality time together as a family.

While somber in nature, the program offered a variety of takes on how to approach end-of-life care. It’s worth checking out. I watched in on the PBS channel on Roku.

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The dreaded conversation

UsAgainstAlzheimer’s recently sent out an email about planning for your parents’ future, if/when they become incapacitated in body or mind and are unable to care for themselves anymore. The message stressed how important it is to have “the conversation” where you discuss these difficult topics with your family and develop a plan just in case it is ever needed. Of course, I think this is the smart and right thing to do and would encourage all families to do this.

But from my personal experience, easier said than done. As I’ve mentioned before on this blog, my dad had a fear of death so he never wanted to broach the subjects of becoming ill and dying. My mom, ever the chipper one, would respond to my encouragement to fill out the will paperwork by saying, “Well, you already act like we have one foot in the grave. We’re not dead yet!”

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I’m hoping that with the baby boomers, such discussions won’t be viewed in such a taboo fashion. And as long as Generation X and younger can fill out a form online, they’ll probably be willing to do it. While the younger generations certainly have earned some fair criticism about their navel-gazing tendencies, in this case, it is a good thing to sit down and spell out exactly how you want these aspects of your life to be. The more introspective, the better!

For those of us who have family members with dementia who did not plan ahead, you often feel like you are stumbling through the dark, hoping you are doing the right thing, but the uncertainty can haunt you in the middle of the night. My dad was afraid of dying, but if he could have understood what his sad reality was going to be with Alzheimer’s, would he have been more inclined to be a DNR? I’m not sure, but I am plagued by what the doctor on duty at the nursing home said the day Dad died. The DNR instructions from the hospital did not make it to the new facility, and the doctor said he thinks the EMS worker broke Dad’s ribs when performing CPR on him. That should not have happened. We as a family should have triple-checked about the DNR order. That’s why it is so vital to discuss these things before an emergency arises, because no one is in a proper frame of mind at that point.

What tactics have worked in your family to discuss these sensitive end-of-life topics?

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A family’s choice

Today was a fruitless 10 hour hospital vigil waiting for the doctor to discharge Mom back to the nursing home. The doctor finally showed up at 5 p.m., spent about 3 minutes with Mom and gave the green light for discharge. Of course, by then it was too late in the day, so Mom is stuck in the hospital another night.

The woman sharing Mom’s room is very ill. She’s in renal failure and is refusing more treatment, which included dialysis and amputations of her hand and foot. Her family gathered today for the big decision.

There was tension, tears and bubbly giggles from the woman’s many grandkids. The doctor stressed to the family how the woman was capable of making this decision and how it should be honored.

While earlier it seemed things might get ugly, in the end, the family did the right thing. The woman will start home hospice tomorrow.

The family’s painful day made Mom and I think about Dad and the decisions made for his care.

One has to balance love with mercy in these situations. Often, people confuse the two but today, mercy won.

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Having a case of the caregiver’s guilt

I’m reading a great book right now, a collection of essays about the dying process called, “At the End of Life: True Stories About How We Die.” Yes, it’s depressing but there’s also so much in there I can relate to. One particular essay that is haunting me is by a young resident who wrote about the night she lost three patients. One of them was an old man with dementia, who was listed as “full code” despite being in advanced renal failure and suffering from dementia. He had not had any family members visit him. He died with only the hospital staff around him, after they embarked upon an all-out assault on his body to save him in what they knew was a futile but legally necessary procedure.

It seems like there are many elderly patients that die in hospitals without family or friends by their bedside. Sadly, my dad joined this statistic when he passed away.

Certainly this is tragic, though just like when people judge families that put their loved one in a nursing home, there’s more to it beneath the surface.

I remember the first time Dad was near death, and being insulted when the doctor asked if I knew my father was in the hospital. He had been there about 4-5 days by then. My mom had been calling daily, if not twice a day, to get his status, while she was preparing to make the long, difficult trek to the hospital. My mom doesn’t drive and my parents’ car was taken to the junkyard when Dad stopped driving. Mom doesn’t have any nearby relatives or close friends and transportation options are very limited. It would have taken my mom almost 12 hours to get to Albuquerque on the Greyhound bus! So from Ruidoso, NM, she had to find a shuttle service that would take her to Albuquerque, which is over three hours away. My mom had to make sure the bills were paid and everything was in order before leaving home, because she had no idea how long she was going to be in Albuquerque. So understandably, it took a few days for her to get to the hospital.

Dad’s final home, but I have never stepped foot in it.

I had been calling daily, but I was all the way in Atlanta, and was knee-deep in a big work project. Obviously, my dad was much more important than work, but I also knew by then that there could be ups-and-downs in his health. I had been preparing myself for his death over the past year, but it was so hard to know if this was the moment that I needed to be by his bedside. There was also the $1000 last-minute flight price tag to contend with.

I ended up flying out there and it ended up being a false alarm. Still, it was the last time I had the opportunity to see my Dad alive, so I’m glad I made the trip.

But it’s the last month of my dad’s life that’s been gnawing away at me. For all of December 2011, he had not a single visitor at the skilled nursing facility that became his final home. My mom was preparing to visit him over Christmas when he passed away. His dementia was advanced at this point, and he didn’t speak much, but still, I wonder if some part of him yearned for company. By that point, I had already filed for FMLA (though eventually my application was denied.) But I wish now I had taken that time off to go visit Dad. What did I miss out on by not being by my father’s side during the last days of his life? I let finances and work responsibilities rule my decision-making instead of my heart. For once, I should have gone with my heart.

It is a deep regret, knowing that Dad died around strangers, though by that point, I was a stranger to him as well. These are moments and decisions you can never alter. You try to do your best, but ultimately, you have to live with the consequences.

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