In May, my mother-in-law, Joy Ellsworth, had had enough with a pain in her right side and finally agreed with our urging her to go to the hospital emergency room. Despite the fact that her primary care physician had been encouraging Joy for some time to do just that, Joy’s style was to call the provider’s office, schedule an appointment and make her complaints in person, apparently assuming that eventually blood and urine tests would sufficiently inform the doctor as to what might be source of her discomfort and pain.
Joy at age 81 was being treated for diabetes, was legally blind; possessed of vision only out of the corner of one eye and dealing with intestinal problems she might have assumed to be an irritable bowel syndrome or something else manageable with medication. An extremely stoic personality when it came to her health and privacy issues, Joy tended to long-suffering rather than open herself up to an assortment of medical tests and explorations. She seemed quite ready at the drop of a hat to pooh pooh the notion that she might be seriously in need of more dramatic medical attention and that her ability to endure discomfort had worked for her long enough to cause her to attempt to ignore her condition despite warning signs.
What the medical provider knew in terms of Joy’s complaints, was that appointments, blood and urine tests were not going to provide a solution so long as Joy could “manage” her discomfort and avoid learning anything catastrophic about her health.
We were in the hospital Emergency Room for more than 8 hours. During that time a sequence of medical tests and examinations were run including scans, an EKG and x-rays. None of the tests indicated a cause of the unremitting pain in her right side just below her rib cage …. until the last exam, an ultrasound. The result of the ultra sound revealed a growth on her liver and a suspicion that required a biopsy.
Based on the tests, all signs pointed to liver cancer.
In June the results were in, the diagnosis was stage 4 cancer in the liver, bile ducts and lymph nodes. The only question was the origination point from which the cancer had metastasized. It had not begun in the liver and eventually the conclusion was reached that the start point was somewhere near the connection between the stomach and the large intestine.
Joy was referred to an oncologist. By this time, my wife’s siblings had been fully apprised of Joy’s condition and its implications.
My perception of Joy’s stoically heroic or heroically stoic (makes no difference) way of expressing herself about her life, her fears, her expectations, is that the stoicism was part of a larger self-presentation that tended in a narcissistic direction. For years Lietta and I had discussed the seemingly over-arching concern Joy exhibited in terms of how she was perceived – by everyone – and not just immediate family. Particularly after she became a widow, her need to portray herself in a spot-lighted way became more pronounced.
Lietta and I had arguments about how we ought to manage our interactions with Joy in an open and honest manner, given Joy’s tendency to act as if she were constantly on stage and in front of an audience. On more than one occasion, I found myself caught in a three-way conversation with Lietta and Joy in which I was obviously the audience Joy was speaking to even though her interaction was with Lietta her daughter.
The rest of what I write is entirely my opinion and judgement based on my observance of events, behaviors and listening to dialogues between Joy and others.
Once having become aware of Joy’s “performance” and “audience-minded” way of speaking to individuals when other people were present, it became somewhat of a challenge to hold an honest conversation with a mother-in-law who treated everyone in the same self-interested way: she only told you what she wanted you to know … and nothing more.
Under the diagnosis of a terminal illness, Joy could no longer reveal to you only what she wanted you to know. We all knew what Joy knew and had confirmed with her medical providers: she was dying and her condition was not fixable.
Remaining heroically stoic, she rejected the idea of chemo or radiation therapy if such could not hold out a promise of more than six months assuming therapeutic success. Remarkably poised about not wanting unnecessary physical distress and adamant in seeking to preserve her dignity in dying, Joy signed documentation requesting non-heroic measures in treating her condition and agreed to accept hospice care when the time came.
She wanted to die at home, planned to do so and hoped to do it by falling asleep and not waking up.
At the outset, stunned family members flocked to her home almost en masse – which was great for raising her spirits but also harmful in draining her strength and energy.
Lietta and I – next door to Joy’s home – experienced a sense of being somewhat suddenly pushed aside as her children and grandchildren arrived to see mother and grandmother one more time; to “be there” for Mom or Grandmother, and what appeared to be an attempt to one more time act out a previous time when Joy had hosted and presided over a Thanksgiving or Christmas celebration.
Only this time, Joy was in a recliner, breathing through a tube connected to an oxygen machine via a 25 foot rubber tube and doing her best to be the hostess with the mostess.
The visits simultaneously raised her spirits and drained her strength, requiring that she frequently retire to her bed to sleep while the celebration continued. That’s the way she wanted it to be.
For Lietta and I, the two years of Joy’s life in Spokane, during which time we had witnessed the onset of her declining health which was kind of offset by a greater frequency of intimate interactions in private meals, movies, long drives, a seemingly endless array of rummage and craft sales during the autumn months of both years, shopping (including dropping her off at a store and leaving her to leisurely push a cart through an entire Fred Meyer’s, Target, Shopko, Burlington stores. There were church visits, shared meals at home, Red Hats meetings and visits to several senior centers, church services at the Episcopal cathedral, the Methodist, Lutheran and U.U. churches.
All that came to an abrupt end as Joy became temporarily lost in all the family affection that surrounded her.
The decline in her health was surprisingly rapid. The arrival and departure of family members eventually trickled down to her four adult children. Then a time came when they needed to return home to take care of their own affairs – all the time promising and intending to return for the final scene.
On Sunday, August 13th, Lietta and I inherited the care and keeping of Joy who by that time was almost entirely sleeping her way through each day. On Monday we helped her walk to the living room to her chair after she awoke. After a few hours, she was ready to return to her bed, but her strength had failed her and she was unable to stand or walk. Lietta called hospice and ordered a wheel chair which was delivered that afternoon. We managed to return Joy to her bed. She did not leave that bed again.
By Wednesday, after emotional episodes with Joy who was in and out of coherency, Lietta and I had concluded that Joy was more than likely not going to be able to pass in her home in her sleep. We contacted the hospice folks who were of the same mind.
She was taken to a hospice facility in North Spokane where adequate care was given and skilled nursing immediately available on a constant basis. Lietta’s brother flew in from Arizona to be with his mother at the end.
Friday morning, we gathered around Joy’s bed, Lietta tearful and bearing up with a courage I cannot measure. Joy was lying on her side, seemly asleep or unconscious, her death rattle already sounding. The hospice chaplain was miles away and not scheduled to visit until the afternoon.
Never taking her eyes off her mother, Lietta asked me to read scripture. I read The Lord’s Prayer verse by verse with Lietta repeating after me and speaking to Joy. When we were finished I started into the 23rd Psalm (the Lord is My Shepherd).
“He maketh me to lie down in green pastures. He leadeth me beside still waters.”
At some point, when Lietta was repeating a phrase I had just read, Joy opened her eyes, looked directly into Lietta’s face for a few last fleeting moments and then closed her eyes again.
I did not see her breathe again. Lietta called for the nurse who confirmed Joy’s passing.
The last mortal vision Joy saw was that of her oldest daughter attending her until the final moment.
I have no idea how long it will be until Lietta is fully at peace with her mother’s passing. She is tormented by a sense of regret at her perception of how hard and harshly she treated her mother in encouraging her to perform the necessary self-care, seek the necessary training and information regarding blindness, diabetes, pain management, not to mention the household chores Joy could manage in maintaining her domestic independence.
Lietta says she badly wants a do-over, believing that in encouraging her Mom to do as much self-care as possible, she (Lietta) gave up her desired role as a daughter and unwillingly became a care-giver in the absence of professionals to whom Joy would not give attention.
I’ve witnessed her sense of loss and the greater sense of alienation from some members of her own family who have misread and misunderstood the actions she took in asking her mother and the rest of her family to take the illnesses seriously; who expected them to be able and willing to prepare for that time when the finality of Joy’s mortality was unavoidable.
I see her pain daily.
I weep for her weeping, and grieve for her grieving. She has become over the past month, a monument to personal courage, grace under fire and her own fierce and unyielding commitment to the honoring of a life and integrity of dying.