Life is a Mangle

7-APR-2019, Port Townsend, WA – Contranym – a word that is its own opposite. The noun mangle and verb mangle are life at the moment. A mangle is a machine with rollers that smooth cloth. I think of them as the wringer rollers on a washing machine, or the machines that iron sheets in a hotel. The verb is to destroy usually by twisting and cutting.

Hilary is dying. It blots out much of what I intended to write about.

 She stood in front of the temple and spread herself upon the wind, thinner and thinner, until only the wind remained.

Apollo referring to Hera in Star Trek episode 33, Who Mourns for Adonis

Friday a woman from hospice called to tell us that Hilary had taken a marked step downward.

When Hilary returned to the care home where she lives following rehab for a broken hip, the owner of the care home suggested we look into Hospice Care. It sounded like a Medicare scam. To qualify for hospice care, all that is necessary is a doctor to say that the person has a condition the could result in their death within six months. In the back of our minds, Jennifer and I each remembered that we knew someone whose parent had been in hospice care for years.

We were uneasy with hospice because we were confident that Hilary had another ten years to go.

With hospice care, which would cost us nothing, someone additional would come to visit Hilary multiple times a week to provide additional care. A religious person would stop by to provide comfort – this sounded like someone’s idea of a bad joke. Hilary has never believed in any supreme being a day in her life, nor can she engage in any sort of coherent conversation, but the more people visiting Hilary the better.

The hospice industry in Atlanta is booming with numerous companies providing the service. The fees and profits must be huge.

Jennifer would hear from the hospice personnel and their management about Hilary. The minister somehow got Hilary to sing God Bless America, a feat that fills Jennifer and me with wonder.

Jennifer spent some time on the phone with the woman who called. Jennifer then called the manager at the hospice company, the caregiver at the care home and the owner of the care home. The image that forms is of Hilary as a rag doll who does not respond to her name, can not sit up, can not eat or drink. But, the image is inconsistent, because there are moments when she will open her eyes, she will eat something.

There are so many variations in Alzheimers and dying.

Some sufferers forget how to swallow. If something liquid is placed in Hilary’s mouth, she will swallow. The caregiver has been opening Hilary mouth and pouring a small amount of Ensure into Hilary’s mouth. Hilary will swallow and the process will repeat…sometimes.

The caregivers have been getting Hilary out of bed each day, bathing and dressing her. She has no bedsores.

How long will Hilary live?

The question is answered uniformly but couched differently. The caregiver answered, ‘‘I am not God, I can not tell you!‘‘ And then quietly, ‘‘It will not be long.’’

The hospice worker bobbed and weaved, telling Jennifer that one can’t know, but Hilary has taken a major step down.

Someone else did speak longer saying that it varies so much by individual, someone who one would expect to pass quickly can take months, others seemingly strong will pass in a night.

The uniform answer to the question should Jennifer fly there was yes. Would Hilary make it to Monday? Again the answer was yes. Jennifer has a 6 AM flight out of SEATAC. Delta airlines knocked $200 off their lowest fare to help out. Delta wanted a lot of information about Hilary, where she was staying, the name of the hospice company etc. They are kind to do this at all.

How is Jennifer? Fine, except when she breaks into wracking sobs. Jennifer confided that before she had her children there was no one in the world she loved more than Hilary. I asked where I might fit. She looked at me. I asked above or below Falco the cat. She started to laugh, and then looked at me with little expression and told me she’d have to think about that.

Times like this are filled with strong emotions that power up the misery, sadness and dread; the emotions also punch up what is funny and make us laugh harder.

The back of the room at a wake is where all the funniest jokes are heard.

Jennifer asks, ‘‘Have I been a good daughter?’’‘‘Have I been the best daughter I could have been?’’ Reassurance does work to put these doubts to rest.

Intellectually, we understand that Hilary has not been with us for years. She has, like the gods in a 1960s Star Trek episode, spread herself upon the winds and slowly disappeared.

Hospice and palliative care is what we want and have been giving. The end goal is Hilary’s death. Intellectually, we know and understand this. We easily make the decision not to have a feeding tube, but now Jennifer will be there watching the effects of these decisions, watching Hilary leave this life.

I’m not flying to Atlanta with Jennifer. The reasons are mundane, selfish and trivial. My friend Erwin is flying to Seattle to join me to work on Caro Babbo, to install the new radar and autohelm that arrived the day before the phone call, to redo the wiring and install a proper marine circuit breaker panel.

When the time comes, I’ll be on a plane and be there in twelve hours. Erwin will be here alone to carry on.

You can read about what we have written about Hilary here:http://carobabbo.com/?s=hilary