I watch the clouds float by – where are they going?  Where have they been?  Does anyone care, or even notice except for me?  Will anyone notice when I am gone?  I watch the flowering Bradford tree outside my window, now in full bloom, like snow against the sky. 

Will I see another winter snow, or a fall harvest garden, or a summer sunflower field, or even a spring planting?

I wait… and I watch.

at least as much as I can be at this point.  I think there is always more one can do.

      I’ve been thinking back on the death of a good friend just before I left on this cruise.  He was a scientist, a marine biologist, always looking for the proof of a thing – any thing – every thing.  Yet he had Buddhist leanings in the later years.  True to his science background and investigative mind, he had studied many religions over the years and had decided Buddhism was what held his interest now – or as he said – he had a keen interest in Buddhism.

      When he received his diagnosis of Stage IV melanoma – he went online to learn more about it, even as he started chemo treatment with its slim odds.  Nan had suggested – after speaking to an experienced oncologist who said the chances are so slight with that diagnosis – that he confront his doctor about his honesty as to the prognosis and his recommending hospice – she knew that doc usually waited until a day or two before the person died to stop treatment and say it was time for hospice.   Allen asked the doctor, who then said that he would be straightforward about both the prognosis and hospice referral – NOT!    

      Heart problems developed which the oncologist said were due to his old problems related to his heart, later determined to have been brought on by the chemo.  Treatment slowed as the heart was dealt with – or attempted to be dealt with.  The trip to MD Anderson was discouraging.  The Medical Director at Nan’s Hospice said that his prognosis was very poor and he should start preparing for the end. 

      We had tried to tell him that, but his investigative side continued to play as he checked out other chemo and other meds even as he said he was ready to die and wanted hospice when it came time. 

      Nan had to be the one to tell him it was time – actually, it was past time – since his general doctor wanted him to build his strength back up since he was so weak now and the chemo doc wanted to still try other drugs.  And Allen wanted to research a nifty scooter so he could get around his apartment better. 

      We all tried to tell him that it was the natural progression of his cancer that was making him weak and nothing would make him stronger now.   But he loved his research, whether in science or in determining what to buy.  Nan realized that he needed this research into a scooter to feel in control of something since so much was being taken from him.  So we all waited even as help was gearing up. 

      One male hospice volunteer, an intellectual who was trained in zoology, went to visit and they engaged in a exhilarating exchange.  Another male volunteer was a Buddhist so could go and share that aspect and meditate with Allen.   And a female volunteer who did hand and foot massage was involved to provide support for Allen’s wife.  Allen had been a hospice volunteer so many volunteers were wanting to help.

      But hospice had to wait as first, the scooter was the focus and then building strength back up.  The doctor had actually said he should eat more – like a hamburger with all the fixings and a shake – since he was malnourished.  Duh! as the kids say. 

      Not eating is the body’s natural way to move beyond the energy needed for digestion – meat is the hardest to digest and the first item to be dropped naturally.  Allen tried, but just couldn’t eat that – or much else.  And he was beyond getting physical therapy to help, but that continued, also.

      Eventually, he was so weak that he finally accepted it was time for hospice.  And 8 days later he died.  At one point Nan had asked him what he would think if he went to visit a hospice patient who looked like him.   Allen acknowledged that he looked like he was close to dying and he would have wondered why he hadn’t gotten hospice earlier so he and his wife could have the support and education to make it a bit easier.

      Not only does not facing one’s impending dying impinge on the patient and family not getting the necessary support, it is also a grave disservice to the children of the patient, who usually goes along saying “I’m fine” so as to not worry the children.  A rosy picture is painted, particularly when the children live out-of-state, so they thing everything is fine.

      When suddenly, 2 weeks before dying the patient finally tells the children, they can’t handle it.  They haven’t been given the time to prepare and slowly come to terms with what is happening.  “It’s so sudden” they say.  And they are not ready.

      “We usually die the way we live” Nan has frequently said.  I understood better seeing Allen and his journey.  His few years of interest in Buddhism was not enough to override the long-standing pattern of being in control, being a scientist and checking out everything, doing things himself and not trusting that anyone else will do it right.  A course correction at the end helps modify, but doesn’t change, the destination.

      I still have some time.  What do I need to do?  Face it all – obviously the first step.  Accept it – I am going to die!  We are all going to die eventually, but I am going to die soon!   I think I’ll read that book, “A Year to Live” in earnest – from the beginning – again.  And do the work.  It is time to prepare!

Subject:           Osbeth almost died

From:              Nannie109@aol.com

To:                   ClarisaT@yahoogroups.com

 Finally have a chance to email you and bring you up to date.  So much has happened.  Mother had an exacerbation of her condition and almost died.  On top of her ongoing condition she developed pneumonia, probably from sitting outside in the cool, night air so much, which almost did her in.  They wanted to air-lift her back home but I prevailed upon them to wait and allow me to be with her.  They finally got the pneumonia under control, and relieved her lungs of mucus so she can breathe again. 

 She will be allowed back into her room in a few days… IF she’ll continue the breathing treatments and using O2.  She continues to deny anything is wrong but did say she had a lot to tell me.  Unfortunately, she gets so short of breath when she talks, she still can’t talk much.  I was called back from the donkey expedition from the Valley of Bones.  I may or may not resume depending on Mother’s progress.

 When I arrived here, she was so pale, could hardly breathe without wheezing and coughing, her heart was racing.  She looked terrible and had lost weight.  She was scared enough to tell me (finally) where important documents were and what she wanted (burial, not cremation). 

 But as soon as she started breathing better and feeling better, she decided she was not only fine but had been fine all alone (no need for concern – what?  she was close to dying?  No way!)  She didn’t want to be alone with people she didn’t know but she also didn’t want my trip interrupted.  Her new friend Marlene, stayed with her until I returned.

 Elsie was so upset.  She thought it was her fault (the way kids do) for wanting to stay up late one night and watch the pod of whales surging by.  I tried to assure here it was NOT her fault (it turns out Mother was on the top deck, in the wind, without a jacket or coat on as she wanted to be part of nature, she said.)  Most assuredly, Mother has no one to blame but herself, but I wouldn’t even blame her.  With her probable limited time who wouldn’t delight to be a part of such an event?

 Fortunately, she seems to have reversed it all and will soon be allowed to return to her cabin.  She won’t like it but, between hiring a nurse, myself and Marlene, we’ll keep her company all the time.  Oh, Elsie wants to help, too.  She has been so helpful so far holding Mother’s hand, singing to her, reading to her, telling her stories and showing her the pictures she draws of what is happening on the ship.  They laugh over the outfits and shenanigans of some of the passengers. 

 And Marlene has been a gem.  Marlene tells me that, due to Mother, she has turned her life around because of Mother’s openness about death and dying (can you believe it?) and her wisdom in that area (is this my mother?)  I can’t imagine what Marlene is referring to.  Perhaps an alien was inhabiting Mother’s body while I was gone.  But it sounds like whatever it was, it was good for Marlene.  I guess I’ll find out as things calm down.

 I’m so sorry to hear that Madrue died.  I can’t begin to imagine how difficult it must have been for you to be the one to be direct with her about the time for hospice.  So many doctors simply cannot face it when they can’t “fix it” for someone, and so advise more and more treatment.  Of course, it doesn’t help that so many people, even those associated with hospice, aren’t ready to let go (they see it as giving up particularly if they had been a doctor or a nurse as Madrue had been before she became a volunteer eleven years ago.)  It’s hard enough to deal with ongoing deaths of people you don’t know but then come to love, but when it’s one of your own, as Madrue was, it is even more difficult. 

 You played it right, though, talking to her of “allowing natural death” since she was such a nature-lover, talking to her of nature and the help hospice can provide not only for her, but also for her husband and her daughters.  No wonder the most common comment on the family satisfaction surveys sent out after the death of the patient is “We should have gotten hospice sooner.”

 I remember reading an article about communicating a prognosis, particularly one that is terminal, is one of the least addressed in medical training even though the article also said the patient show less anxiety and depression when they are told they are terminal.  Patients need to know their symptoms (generally pain) will be controlled, and that their doctors are honest but not brutal with them.   The article ended saying that relaying a prognosis should be viewed as an ethical duty of the doctor to help build the trust of decision-making.

 Even though it should be the doctors telling the patient, actually in this case, anyway, it makes more sense for you to do so since you know her better and know metaphors (like dealing with nature) that would make more sense to her.  It is always hard to tell someone it is time for them to say their ‘good-bys’.

 Years ago, I wound up being the one to tell my father-in-law he was terminal and there was nothing they could do, since the rest of the family and the doctors wouldn’t.  My father-in-law had been raised in Italy as a sheepherder and better understood my speaking of whether he would want to be told of the wolf in the hills endangering the flock he was to take out than about terminal prognosis, diagnosis, etc. 

 “YES, of course!” was his response, so I wound up telling him that the doctors found he was full of cancer and they couldn’t remove it.  There was nothing else the doctors could do.  We cried together and shared a difficult moment that further cemented our bond.  (My mother-in-law later told me she didn’t ever want to know if there is a problem.)

 But the average person does not want to know the “Truth” much less have to make decisions regarding it, no matter how much they may say they do.  When it comes to things like dying, they prefer to deny what is happening, which is their right.  Even though they may have prided themselves on facing death, it manifests as an intellectual attitude rather than an emotional one.  The idea is right, the reality is not.  There is always something else to try or take, something else to think about, read about or, more recently, to check the internet about, rather than face the core emotion – “I am going to die!”  And I may well be the same, even though I hope not to be.  I hope I can learn from our patients and the people I’ve been honored to share this journey with.  But really, who knows? 

 Gotta go – keep on keeping on.  Give my love to everyone and take care of yourself.  You do great work.  I know how hard it can be.  People can either think one is a saint for working in hospice or a ghoul for constantly dealing with death.  We know it as a calling, a ministering no matter what our spiritual bent, we’ve chosen  (or it’s chosen us) that most don’t want anything to do with.  If we don’t share that final walk with people, who will?   We know: no  one should die alone and unloved. 

 Thinking of you,

Nan