end of life - Kampuchea Crossings

She kept us on our toes for six weeks, clocking an impressive array of medical emergencies one after the other. Who knew that heart failure could be so stunning, and tragic, and poignant. I got front row seats to a thoracentesis procedure, where the fluid was sucked out of her lungs through a long needle. I got to sit with the MRI technician at 3 am as he isolated the network of carotid arteries on the screen, searching for the occlusion. I got a crash course in thyroid function and how it slowly but steadily weakened one system after another, the signs flashing by without me recognizing their urgency except in hindsight. She racked up to eleven specialists/teams coordinating her care by the end, with visits nearly every hour ’round the clock.

The oncologist said the cancer was already growing for around 10 years – in other words an indolent or low-risk biology. It was just one of the problems I watched her ignore when I found out about it nearly a year ago. There was no convincing her, as she discontinued all medical visits and her one medication, in what I think is her way of going away quietly without being a burden to anyone. She thought she was being kind, thinking quietly of others in her unobtrusive way as she had done all of her life. Except things don’t work that way. When her dementia finally set in enough to allow me to take charge, I pushed aggressively for the medical visits and tests. By then she trusted me for everything. But all the medical advances at the hands of an incredibly coordinated care team at Mount Sinai Hospital wasn’t enough. The descent into progressive systems failure isn’t painless and, in her case, accelerated a dementia that wouldn’t have taken her as quickly if she’d just continued her healthcare regimen. None of these stick around in her memory because the neurons and pathways have deteriorated, and there’s little energy to spare past the increasing chronic pains. Meanwhile, people who love you watch helplessly and run around like chickens with heads cut off, scrambling to make things better.

It’s a raw emotional landscape, uphill in every direction with few high ground. You go from berating yourself for not doing enough, to resenting her for not taking care of herself. In the midst of all the bad-to-worse news you get one small breakthrough, and then the universe takes that away. And it cycles around again. So you take it out on everyone else who love you while retreating from friends and others who try to reach out. And you feel horrible through all of it. But you do it all again the next day.

I know all my wants are selfish – she has a right to her decisions and the pain even if she didn’t ask for it. She likely knew what she was doing.

I wish I knew if she understood any of what happened these six weeks, or still recognized how much we love her, even after her brain finally let the fading memories go, including who I was.

I wish I can say thank you or buy chocolates for all the strangers or colleagues or friends who braved that miserable fog themselves, and are giving a guiding hand or are simply there through the fiber optics.

It’s done now, after nearly six weeks of intense days with her. It was sudden and shocking and sad.

Til next time, Mom. I love you both and know you’re together again..

From The Guardian, Top Five Regrets of the Dying, a piece written by a palliative care nurse, Susie Steiner, who worked with people in the last 12 weeks of their lives (published Feb 01 2012)

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

“This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. Health brings a freedom very few realise, until they no longer have it.”

2. I wish I hadn’t worked so hard.

“This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret, but as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.”

3. I wish I’d had the courage to express my feelings.

“Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.”

4. I wish I had stayed in touch with my friends.

“Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.”

5. I wish that I had let myself be happier.

“This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content, when deep within, they longed to laugh properly and have silliness in their life again.”

What’s your greatest regret so far, and what will you set out to achieve or change before you die?

Moving on and saying goodbye…

Top regrets at the end of life..