Best Christmas ever?

When I first met Mr. R, who had just been told that his heart was so weak, that he'd likely die within weeks, and asked him who I could contact for a family meeting, he told me "no one".  Of his 3 children, he was estranged from them all. I pitied him, he'd clearly chosen a life of solitude.  The event that prompted his admission to the hospital was being found by his neighbor on his floor of his home. He was extremely thin, having lost  60lbs of weight this year, he was very weak and he was having a hard time breathing.

I almost left it at that, accepting that there was no one he wanted to contact, but I pressed him a bit to see if there was a glimmer of hope. Finally he teared up and weakly said I could try his daughter on the east coast. I think he was more afraid of rejection than the hope of seeing his kids again.

A few days later his daughter arrived and the tears flowed as the power of forgiveness wafted over each of them.  "Can I call Teddy?" his daughter asked, speaking of one of his sons. He bristled as the mood changed and he grunted "No".Well I thought, at least he'd been reconnected with his daughter.

Mr R. left the hospital and I lost track of him until this week, when I started back at the hospice house.  When I walked into his room I was surprised to see a room full of people. Such a contrast from the lonely, sad man I had first encountered weeks before. I asked Mr. R to introduce me to everyone. He beamed with pride as he introduced grandchildren he had recently just met and then had to pause as tears started when he came to his son.  It had been 20 years since they'd talked.

These are precisely the moments I live for in palliative care. I was a witness to healing; not a physical kind of healing, because Mr. R is still in the process of dying, but a relational healing.

It's seems backwards to say, with Mr. R on his deathbed, that this will be the best Christmas ever for them - but strangely it is.

No one should...

I interacted with an incredible kid recently at the House. Innocent and respectful, he was not intimidated by authority and extremely kind to all he encountered.  I think this interaction sums it up: when meeting him at hospice with his mom, who was dying with cancer, he interrupted my solemn conversation to ask if we had any microwaves in the room to pop his marsh-mellow topped popcorn that he just couldn’t wait to eat.

As we interacted over the next days, I began to compile a list of things he’d gone through that seemed absolutely unfair.

No kid should have a mom be diagnosed with cancer
No kid should have to stay up all night walking her up and down their stairs at home, at least 20 times, because she’s too restless to know any better.
No kid should have to watch his mom swing at the air and shove people away from delirium
No kid should have to experience telling their mom “I love you” only to hear “I hate you” back with a blank unknowing stare; even if it is the liver failure causing her to be out of her mind.
No kid should have to wake up every hour of the night to look at the clock and wonder if his mother was still alive.
No kid should have to sit at the bedside of his dying mother, wondering why she made strange sounds, why her feet were blue and whether she could still hear him say “don’t go”.

I wish my list ended here. But tragically I must add:

No kid should go through all that, have a mother die, and then 36 hours later have his father die to. 

Universal

There's much debate ongoing in the healthcare-for-all arena these days. I won't weigh in politically, however, I'd like to share this story:

Kathy had a terrible childhood. You'd expect this if you had to watch your mother die of cancer when you were 8 years old. Kathy and her brothers got even more bad news as they grew. The cancer their mom had died with was inherited. Their family had a condition that put them at tremendous risk for getting the same cancer. It wasn't until Kathy's older brother was diagnosed and died at age 25 that the reality of this all sank in for her.

Kathy, a teenager when her brother died, made 2 related vows. She was not going to die of this cancer, and she was not ever going to leave children "motherless" like her own mom did. Still on her father's health insurance Kathy began the suggested annual screens needed to watch for this cancer.

Years went by and many things happened; Kathy got married, had 3 kids and then divorced. In her late 20's she found herself a single mom, working odd jobs to support her family, and no way to pay for her own health insurance. As they, say she was the working poor.

And what stopped? Those annual screens. Unlike clinics that offer free mammograms and blood tests, Kathy needed an invasive screen that no one provides "free".

In her 30's Kathy met Allen. They fell in love, married and quickly got pregnant. Kathy was delighted to again have health insurance through Allen and quickly made arrangements to begin the screening.

You will already know where this is headed. I can't imagine being told that I had cancer. For Kathy it was even more gut wrenching, she knew she would probably get it, and yet hadn't had the means to catch it early and possibly cure it. The vows she had made as a teenager would all be broken, and although Kathy fought through chemo and surgeries for 2 years, she did not win the fight. At the young age of 36, her life was over.

I met the new generation, the 11 year old, the 9 year old, the 6 year old who had her birthday 3 days before her mom died, and the little 2 year old. I wonder if they will be making vows themselves, and I wonder if they will live in a society with insurance that will allow them to put and end to their cancer cycle.

Borderline

If you have borderline personality disorder, please try really hard not to get an aggressive cancer.  The combination of the love/hate, push/pull personality doesn't do well with the rapid changes that come from say, ovarian cancer or pancreas cancer.

I recently took care of a woman in this situation. She'd opted not to pursue chemotherapy for her advanced cancer, but also seemed determined to feel good despite not wanting any medications.  Our daily conversations went something like this:

"Ms. Fraz, how are you this morning?"

"Miserable. Horrible. Awful", she’d say with her disheveled hair, eyes half open, and wrinkles cemented on her face from constant frowning.

"Oh?" Feigning surprise, though this was the 4th day in a row she'd said this, "What specifically is bothering you?"

"I'm vomiting, I'm in pain, and I'm so tired" were her general complaints.

To this I reminded her, "You know, Ms. Fraz, you haven't allowed us to give you any medication to help"

Her reply in full whine now, "But I don't like how medicine makes me feel" pause, "What are you going to do to fix me?"

And this is the crux of such a personality. She wanted someone else to fix her and to bare responsibility for her misfortune.

What makes borderline’s even more difficult in terminal illness is that they usually don’t have a lot of healthy relational support. 

Ms. Fraz, in fact, had only one single person as her friend. No family…no other human relation. More tragic, the one friend she did have, Bill, was adamantly apposed to her decision not to pursue chemotherapy.  He would tell her daily that she would be going to Hell for not trying to cure herself. “It’s like suicide to not try for a cure”.  He’d badger and bemoan her and she’d cry and get distressed. She’d demand he leave, and then call him back for more.

She was aware that when she lost the ability to make decisions herself, he would be in charge. She had given him that power legally, even acknowledging that he would probably choose things she didn’t want.

And so she spent her time dying of cancer, wanting to feel better, but refusing the help we offered. It was in this pitiful state of inertia that she continued to pull Bill in, to listen to his rants about her mistakes and damnation until finally she weakened and he won. Back to the hospital she went from hospice, to spend her last days hooked up to machines and IV’s, getting poked and prodded, pushed and pulled.  A perfect borderline personality metaphor; dying in the same way she lived.

Birthdays and Anniversaries

When anniversaries or birthdays approach someone who is dying, the tension in the room grows. It's often one of the first things family members tell me, "You know her birthday is this Tuesday, you don't think she'll make it till then do you?" or "His son's birthday is in a week, I hope he can make it past then" The sense is, the death date is so etched into memory, even more than birthdays, and no one wants to share this date with the dying.

Of course, statistically it is very rare for someone to actually die on their birthday or anniversary. In fact the odds are less than half a percent. But this last week I had two people die on their anniversaries. Both approached it with that same dread. One was a young mother who'd been married 17 years. When the day arrived her blood pressure had dropped to 60/30. All of us, along with her family tried willing her to survive the day, but she didn't.

The other woman was older. It was her 25th wedding anniversary. Her husband had wrung his hands and paced as the days grew closer. Against the odds, she too, looked to be actively dying the morning of her big day. The day went on and family gathered, but I knew with certainty she'd not make it.

At 3:27pm her heart stopped and she took her last breath as her husband kissed her for the last time. The chaplain came to comfort him, and as they talked the chaplain asked, "At what time of day were you married?" The husband stopped, looking at the clock, "Our wedding began at 3:00pm" and then as if reality of the events finally struck him, tears began to fall and he continued, "Our wedding was only 25 mins long, and 25 years ago to this moment, I was kissing my bride for the very first time as her husband"

She had promised him days before that she wouldn't die before their anniversary. She was right to a degree. But what are the odds that she died not only on the day, but at the moment of her first married kiss?

Anything more frightening?

It's hard to imagine a worse reality. She had contracted some sort of encephalitis. Absolutely regular 23 year old, living life fully, when suddenly she became ill with headache, sleepiness and fevers. By the time she was admitted to the hospital, most of her organs were failing. Her kidneys shut down, requiring dialysis and her liver began to fail.

Much more troubling than these major organ problems however, was the damage occurring in her brain. After the onslaught to her body was over, she was blind and hearing impaired. Even the typical sensations of touch seemed to be misinterpreted now by her brain.

She was in the hospital for months. Nothing improved.

Can you imagine what reality was to her? I try, and it's horrifying; To not be able to communicate with anyone... to be in constant darkness and if sound does filter in, the brain can't understand what the sound means!

It was in this condition that I met her. Sitting in her room at the hospice house, she'd all of sudden cry out, "Is anyone there? Can you hear me? Help me, please! I'm here, I'm here..." But none of my words or even touch seemed to register.  She was in complete isolation. I wasn't surprised then when the crying out turned to, "If no one's out there, I wish I could just have a gun,  and let this be over"

I had no gun. But mercifully the family had, after months of this crying out, opted not to continue dialysis or treat new infections. It was only a matter of time then before her wish to no longer be living in such a frightening reality would be over.

For the record: If I am ever blind and deaf and trapped in my brain, please don't try to keep me alive

Choices

It was a bittersweet moment. She received her acceptance letter to medical school the same week her pregnancy test read "positive".  If there hadn't been 2 previous miscarriages, perhaps there would have been no real decision. But, knowing that motherhood was in her blood, she boldly declined her spot.

As the years went by, her three healthy children granted her an indescribable joy. However, there was always that nagging thought, "Could I have done both?". Her husband heard the regret often and tried his best to encourage her, but it seemed to eat into everything she did. She was convinced she'd made the wrong choice.

Then the unthinkable; she was diagnosed with an incurable cancer. Bravely she fought through the vomiting, weight loss and fatigue. Ironically, it was in the stillness of her illness that she was able to finally announce to her family resolutely, "I did make the right choice".

The Change

I wonder when things change? At what age do we start using pills for pain? Oh sure, even with little ones we dose out tylenol occasionally- but that's usually for fevers and not primarily pain. When I child whimpers from a fall, or even cries out loudly with an "owie" we reach out our arms naturally to draw them to us. Who hasn't fixed a minor scrape with a magic kiss? For those middle of the night terrors, we snuggle and bring them close. When they get anxious about trying something new, we give them a hug and gently encourage. Always though, we touch, grab them and pull them close.

Somewhere a long the way it changes. We stop touching and start medicating. Here's a pill for the pain, a tablet for your worries... No more hugs, no more snuggles. Wouldn't it be interesting if doctors treated patients like infants? Drew people in, instead of pushing them away with medicines. I wonder if there would be more success treating pain and anxiety if our initial response was to reach out in embrace?

The system

The "system" always gets flak. But sometimes, like today, it actually does good.

Candice is here dying of ovarian cancer.  Her one and only beloved son has been behind bars for much of her illness.  When Candice came to stay with us, and we knew her time was limited, a letter was sent asking permission for a last visit by her son. 

And the "system" consented.

Today, dressed in orange, shackles around his wrists, and accompanied by 2 guards, the son arrived for his 2 hour visit. His mother, who has lain with eyes half open in a blank stare without a single word for the last 2 days and blood pressure readings hovering on nonexistent, became suddenly alive when he entered her room.  His hand cuffs were removed and he hovered at her bedside holding her hand as she mustered up the strength to say "I love you, I forgive you" all in one breath.

The visit was mostly silent, he crying...she hovering between here and beyond. But he made it, and she waited....just for him, so she could say goodbye.  Thank goodness the "system" allowed it to happen.

Back to work: a reminder

The chaplain was just finishing his prayer for the woman who had died. The family was huddled around the bed. Curled up in bed with her was the woman's husband, staring at her face and mouth, reminding me of the way a new mother takes in every detail of her newborn from only inches away. My eyes drifted back to closed as the prayer neared its end, when suddenly a loud moan started.  The moan, coming from her husband, quickly escalated to a panicked scream as he began to yell "She's not breathing...she's not breathing", His eyes saucer wide drilling holes into her half open mouth.  Although she'd passed away 20 minutes before, the reality was just hitting him.

The room erupted into emotion as someone near the husband grabbed him in a bear hug whispering to "let her go". He seemed in a trance, having an emotional seizure of sorts. Even though I already had tears running down my face it wasn't until he then embraced her saying out loud, "One more, let me hold you one more time" that I lost it.  Something cracked in my self-made wall of distance and for a moment I realized what it might feel like to have your very last embrace with someone you love. 

Another hard reminder on my first week back to work, how precious our time is with those around us.