On Dying
There is a difference between being told you have a terminal illness and being told you’re dying. And between these two things is a big, gaping hole.
I want to talk about that hole. A year ago my best friend was told to get her affairs in order. It was quite a blow. As I sat with her in the oncologist’s office I didn’t know what to say. I had a million questions. So did she. But neither of us had the strength or the courage to put our fears into words…
How long did she have?
That was the question we danced around. That was the question the doctor didn’t volunteer an answer. So we left the oncologist’s office, went back to my place, opened a bottle of wine, and cried.
That question has haunted me every day for the past year, and was finally answered a week ago. My best friend died last Sunday, February 20th.
I’m not going to write on my personal relationship with the best friend ever. It’s just too raw, and I could fill pages on our 31 year friendship. But I do want to write about the experience, about the gaping hole in our health system.
As a side note… if anyone ever throws the term “death panel” at me again I won’t be responsible for my actions. I’m not trying to make this political. Then again, I’m not the one who convinced a bunch of rubes to shout “death panel” at the top of their clueless, uninformed lungs. Because, right now, here is the reality…
Treatment, treatment, treatment, hospice.
Notice that there’s nothing between the last treatment and hospice. That’s the gaping hole. And in case anyone thinks I’m drawing on one incident let me put your arguments to rest. This is my fourth hospice situation, and every one of them traveled the same path.
When a person faces a terminal illness their perspective changes. Instead of focusing on being “cured” – which they accept isn’t an option – they focus on how much time they can buy. As a 47 year old, divorced mother of two teenage boys my friend was obsessed with buying time. I completely understood.
Time Mattered.
And yet, time was the one thing not discussed. Not by her, or me, or her doctor. It was the elephant in the room. All of us knew time was running out. None of us discussed it. Sometimes saying things out loud makes them more real… too real?
Before I continue, let me say that Hospice is the most wonderful institution. I can’t say enough good things about this organization. I am also not bashing doctors. Their job is to treat illness/disease.
What I am saying is that there’s a gap between the end of the doctor’s job and the beginning of Hospice care. It’s a jarring gap that knocks the breath out of the patient, and it’s a gap that needs to be filled.
While I was in the hospital room with my friend a hospice representative visited the woman in the next bed. The woman asked the hospice person to leave, kept saying that she wasn’t ready for this conversation, that she had no idea she was that sick.
I cried for that woman. Guess you can add another “treatment, treatment, treatment, hospice” experience to my list. And while I understand how hard it must be to tell a person that they are dying, relying on euphemisms like “get your affairs in order” followed quickly by a discussion of the next treatment doesn’t help. It’s a mixed message.
What I’m trying to point out is that there’s a step missing in end of life care, and it needs to be filled. Now. And while some people may accept the end of their life in a pragmatic fashion, most do not. To rely on someone in this situation to be clear-headed and pragmatic isn’t realistic and can only be put forth by someone who has never sat and talked with someone facing their own death – especially someone who’s young.
There is a difference between knowing something in your heart and saying the words out loud – words that no one seems capable of uttering.
And even though everyone knows the unspoken truth the transition between not talking about death to only talking about death is mentally and physically devastating. We waited in that hospital room for 5 days until the oncologist showed up and broke the news. The next day the hospice team took over. No doctors turned into a constant parade of doctors, hospice nurses, etc. The goal: Get her ready to go home and die.
The day she was rushed to the emergency room she was scheduled to receive chemotherapy – in fact, she was already at the Helen Graham center. Treatment (think buying time) was still scheduled. And while she knew her condition was deteriorating, she never expected it to happen so quickly. In fairness, I don’t think anyone in this situation envisions how it will play out.
My mother asked me what I thought was needed, and the first thing that popped out of my mouth was a Lady in Waiting. Someone who was with the patient from the “get your affairs in order” talk until (and during) hospice enters. Someone whose sole purpose was the transition from a bad situation into the worse situation ever.
I tried to be that person, and failed. She was so frightened, and I was too close to her and the situation. I knew she was dying. I knew, just by looking at her, that time had run out. I knew it and said nothing. I honestly didn’t know what to say, and I didn’t want to take her down a path that would add to her fears. I’m simply not qualified to take that road. And while we did discuss her dying we both shied away from the reality. It was truly amazing how many conversations we had which deliberately avoided certain words: death and dying. Another elephant in the room.
I guess I think that’s what’s really missing. Someone who has the necessary medical training. Someone who is deeply compassionate, but who isn’t intimately involved with the patient. Someone who can help the dying person navigate the transition – part friend, part advocate. A listener.
Someone who helps the person maintain control of the time they have left.
Reread that last sentence. It’s the crux of the problem I’m talking about. In every hospice situation I’ve experienced control is what falls through the gaps. I’m not referring to the big things (wills, what happens to the kids, finances, or funeral preparations – a terminally ill patient will have handled most, if not all, of those). It always comes down to the little things – a shower, is her bandana on straight, the dignity of using a bathroom instead of a bedpan, the way your visitors talk amongst themselves while you’re in the room, what type of medications you prefer… the way the person becomes their disease.
And the patient needs a safe person to talk with. One of the major strains on a dying person is helping others come to terms with their situation. Sometimes this involves them consoling their family. Other times it involves helping family and friends with denial. And denial, at least when face to face with the person dying, is in huge supply.
In one of my other hospice situations the dying person whispered to my mother, “No one will let me cry.”
In my friend’s situation she would smiled and nod at every person who said, “New cures are being developed every day.” After they left she turned to me and said, “Even if a cure is developed tomorrow it’s too late for me.”
Despite how it sounds, I am not criticizing these people. One of the reasons I didn’t “spin” the situation was because she wouldn’t let me – something very difficult at the time, but, as I sit here now, I realize I wouldn’t have give up those conversations for all the world. My friend and I did the best we could with the hand we were dealt. I just know both of us would have appreciated a little help and a little direction. Nothing could have changed the heartbreaking outcome, but the path we traveled could have been a lot smoother.
In the end, all the hospice preparations didn’t come to pass. She finally got home late Friday night and died very early Sunday morning. And I would be remiss if I didn’t mention how truly amazing she was during her entire illness. She always smiled, laughed, and made ornery jokes. She never became her disease, and while your first thought when you met her (with her brightly colored bandanas and fun hats) was that she was very, very ill, once you started talking with her and experiencing her silly personality and snarky humor you forgot the disease and enjoyed the person.
And while I, and every one else who knew and loved her, will survive there is another gaping hole (in our hearts) that can never be filled.
I realize that I’ve rambled my way through this post – I’ve been rambling through this experience for quite a while – and for those of you still reading… thank you.
Pandora, what you wrote is very, very important and thought-provoking. Thank you for sharing your thoughts on this devastating topic, and I am very sorry you lost your dear friend.
Thank you for writing this.
I’m sorry, pandora. How are the kids?
The boys are devastated, but trying hard to keep it together – as only teenage boys can do. There are some very rough times ahead for them as reality sets in. Leaving her boys was my friend’s greatest fear. Every minute she sought to buy was a minute for her boys.
I was lucky Pandora.My Great Friend of 42 years went from diagnoses to Hospice care right away.
We spent the lucid times taking “trips down memory lane” and laughing.
I spent the last few weeks sitting by him mourning.
There were no more tears when he was released.
I lost my mom at 17, and my son lost his dad at 20 months. I hope they’re scheduled for time to deal with this, it’s a long process & benefits from help.
poignant reminder of the realities of life, and death and love and friendship – she was lucky to have you Pandora –
Beautiful story, beautifully written, thank you for sharing it.
My condolences to you. I have been through the treatment, hospice thing too. You describe it perfectly even through the pain of your loss. Thank you for a brave post.
Sorry for the loss of your friend, P.
Thank you for this, P. I’m very sorry about the loss of your friend. I’l say again, that as difficult as this was for everyone, living with the gift of your friendship as she was preparing to go must have been a huge comfort to your friend.
I almost skipped overt this. I’m really glad I didn’t. Right now I feel so sad for you and her kids… your grief will last a long time, and may never go away completely… But as you implied, it is all part of life, and a part that more and more of us will come to grips with as we too, march onward.
Everything happens for a reason. And your speaking out, sharing this story with us, could be a beginning of accepting the inevitable,… in other words, creating that bridge between treatment and hospice….
Thanks for this. We’re now facing this in my family (mother with two kids in 20s). This may help.
We faced this last year with an older Aunt. She filled that gaping hole you speak of with suicide.
I’m so sorry, Liberal Elite. I hope you find some help in this post.
I also want to thank everyone for their kind words and support. I just hope we, as a nation, can all work towards bridging the gap.
Pandora,
How devastating this may be. Having lost one of my best friends several months ago to cancer, I can say you’ve so eloquently verbalized just how I felt/feel. This is gorgeous. My condolences on your loss. My thoughts are with you.
So very sorry, Pandora. She was blessed to have such a loyal friend.
Such a sad post and so beautifully written. Thanks for sharing.
I’d like to add that Hospice is a great organization. They made my aunt’s last days relatively comfortable. Everyone who works there is so caring and well-trained.
I’m so sorry, Pandora.
I think you’re absolutely right about the Lady in Waiting thing – kind of like a super-nurse of sorts.
“She never became her disease, and while your first thought when you met her (with her brightly colored bandanas and fun hats) was that she was very, very ill, once you started talking with her and experiencing her silly personality and snarky humor you forgot the disease and enjoyed the person.”
Your words describe just how I felt about one of my best friends as well (I believe Mike M. and I are speaking of the same friend). Knowing how his passing affected us and our mutual friends, and how it still affects us today, I feel for you immensely.
I’ll always be grateful to Delaware Hospice. When my Da passed away he was more at ease to be in his home. Debra Puglasi met me in the family room to finalize the issues. Even with her own incomparable tragedies, her sincerity was a comfort I’ll never forget.
Last month we lost my mother-in-law. Hospice was not an option. The doctor she had been with for decades failed to diagnose the lung cancer in spite of the symptoms and failing treatments. Mom was a non-smoker who never engaged in dangerous behaviour, unless you count being a life long resident of Delaware as hazardous behaviour; she never had a chance to fight the disease.
PLEASE Be Vigilant About Cancer Screening. Learn the symptoms and make your physician work hard for your health. Please do the same for everyone you love and even those undeserving of your concern. Vigilance, my friends, vigilance.
We would all be so blessed as to have such a dear friend to walk alongside of of us down that dark path.
Pandora, my condolences. I very much like your idea of a lady in waiting. It’s a heavy burden for friends and family to carry, even when the person who is dying is helping to carry the load, as your friend bravely did. I think your insistence on not letting the person become the disease is very important, not losing sight of the person is so important.
A suggestion for anyone facing terminal illness or even uncertain decline, hospice can come in much sooner in the process and provide some guidance and care. You needn’t wait until the last minute. It is possible these days to continue some forms of treatment even with hospice in the picture. My father actually improved on hospice (to the point of being released after about 9 months), and the experience taught us that our time and energy was better spent enjoying each other and adapting to the new normal as his health declined. (And yet, even having gone through hospice twice, like Pandora and her friend, my mother, sisters and I never said the words, “he’s dying,” until I burst out with it the night before my father died.)
Take care.
Since I have had an insider’s view through the whole time of your story, I cannot be impartial. The heartfelt and universal feelings and emotions you have expressed strike a chord of: “I didn’t know that anyone else felt that way!”
I have of mental image of the Lady in Waiting as a much more mature Glinda (the good witch in The Wizard of Oz). That soothing voice and comforting arm around the shoulders combined with crystal clear vision and knowledge of the future. No one has all of those qualities, but I hope we can all try to be more understanding and strong for our fellows.
Thank you so much for sharing.
Again… to everyone who has commented and shared their stories and thoughts, I thank you from the bottom of my heart. I’m not sure what to do next, but I am planning on doing something about this “gap” problem. Ideas and suggestions welcome!
Politics bows its head before your story.
I too know something about terminal illness and hospice. Of the people I knew who experienced their last treatment, the gap was caused by denial. Not of the patient, but of the people around them who could not stop hoping for a cure or a miracle. To the end they were trying to get their loved one into experimental studies, or searching for new herbal cures.
I think the answer is to live closer to death. Bring your children to funerals. Bring them to visit the deathbeds of their older relatives. Teach them the science of cancer and old age.
And while they are still healthy, gather your older relatives closer to you and your family. They are examples of how to come to terms with approaching mortality, and will teach your children.