An Ultimate Question

Dealing with these last six years of widowhood has also been impacted by my increasing responsibilities with my mom. Because I am only able to visit about once a month, I am much more aware of the gradual decline in her activities of daily living. The nursing staff seems to adjust to incremental changes in her behavior and memory. I see the cumulative effects and wonder how they could miss her increasing inabilities to direct her own care. They think she’s brushing her teeth. I see that she needs to have the toothpaste placed on the toothbrush and put into her hand then her technique monitored. They think she is cute when she can wiggle her butt in time to a tune. I see that she needs help walking down the hall by herself and that she has foot drop in her left foot which has not been propped when she’s in her bed. They think she understands when they ask her a question. I find that she has no memory of ever being asked these questions. Her dementia and hallucinations are increasing, but no one, as far as I can tell, is aware of her inaccuracies unless I tell a staff member.

When she wants a staff member to like her, my mom gives away something of her personal effects. Sometimes these items have had my name on them. When I go to retrieve the item, it is gone and no one knows where it went.

In this last year, a situation developed that has me asking the ultimate question, “Who has the final say?”

A year ago, my mom stopped being enthused about eating. When I was asked in a care meeting what I wanted them to do, I answered that I didn’t want them to force feed her with pureed food or Enfamil or any of the other high protein drinks. My decision was noted and recorded.

At the time, my mom was noticeably losing weight and was weakening. Because there is no other disease process that could cause her to die, I accepted the fact that she was, in her own way, deciding to let go of this life.

After about six months (of monthly visits) I realized she had a distended belly and she no longer had irregular breathing. Her level of energy was still down, and she was still sleeping 22 hours a day. But her weight had increased. When I ate with her in the dining room, I noticed that she was served a milk shake. I asked about that. The dietary workers reported that a special milkshake made with added ice cream and a packet of Instant Breakfast was being served my mom at every meal.

The next day, I had the opportunity to include the dietary advisor in a conversation with my mom. The woman heard my mom distinctly say that she wanted to die and join with my dad. The advisor said she was glad she had heard this request as she hadn’t been aware of my mom’s wishes. I told this woman that my mother had been requesting this since admission to the floor five years ago.

At a quarterly care meeting that same day, this advisor was present, along with other administrators and advisors. My soap-box speech to them went something like this: “I appreciate your attention to my mom. She seems comfortable and attended to.

“I just want to remind you that because my mom has dementia, she is not able to tell you in a sequential way, which you require of her on certain life-threatening or affirming issues, that she wants to die. She can tell me she wants to die, but by the time I get the nurse to come in, she’s forgotten her statement. She can tell me that she doesn’t want the doctor to do anything to bring her back, and she does have that listed on her Medical Directive. Yet when she uses the only method available to her to approach a condition that could help her cross over, you ignore it. The only thing my mother could do six months ago to change her circumstances was to stop eating. Despite my direct request, she has been receiving extra calories, and you have brought her back.

“I realize that Medicare requires some action be taken when there is a rapid decrease in weight or when the weight change is more than a certain percentage in a certain period of time. I also know that our documented agreement at a previous care meeting is enough to negate that very action which Medicare requires your facility to take.

“I just want to know: how can my mother’s wish to die be acknowledged? Who has the final say?”

At that meeting, it was agreed to serve my mom a plain milkshake only if she asks for it. She rarely does, because she doesn’t remember it’s available. Ironically though, she usually remembers to ask for a beer which the doctor finally ordered so it would be available for her if she requests one. She asks for one at lunch and dinner, every day.

The Beginning of a Tale

Titles pop into my head. Then I carry them around in a portable compartment of my mind like a favorite rock found on the beach or in front of me on my path and placed in a pocket of my shirt or pants.

I worry them, and they worry me. I don’t mean I give them a negative feeling or interpretation. The titles and the stones are like question marks at the end of perfectly good sentences. These sentences stand on their own, yet something is coming next, and I don’t know what.

Sometimes the stone just feels good in my hand, similar to how the title “Daffodils in December” rings like a soft bell in my brain. The ‘D’ sounds are grounding; the imagery of the words describe a bright feeling in the dim days of winter. Where the stone promises a memory of the place it was found (a windswept day on the California Coast), this title gives me hope, almost a yearning, of something better to come. I play with it, roll it around in my head and look at it from all angles. While my thumb runs across the one ragged ridge of the rock, my mind keeps catching on the possibility of a story, probably more than one.

“But what is the story?” I ask myself. “Who needs to have daffodils bloom in their life? Why would it be important? What sign other than the visual of bright yellow on a grey day does someone need to see?”

Gradually a female character forms. In my bed under a pine ceiling, I stare at two knot holes. Another piece of the story falls into my mind. The holes remind me of the Cheshire Cat and its off-again-on-again smile. My main character’s turmoil develops substance, and two male characters take their places on either side of her and my queen-sized bed. They represent her dilemma.

It’s still a work in progress but coming along nicely, I think. The title did not get lost, although I have returned the stone to the general area where it was found. The story will eventually be published through my website, www.standinginbalance.com as a PDF download.

Working diligently on my novel series is so engrossing that tripping over a title makes me take a breath from the mind-challenges of carrying so many threads of story lines presented in The Sacred Bundle Series. I don’t mind following the novel characters anywhere they wish to go; that is, until they get into a spot they can’t possibly wiggle out of. At this time, I backtrack to see what signpost they missed. With a smaller project to distract me, I can lay my novel down, refresh my mind with an unconnected challenge, then return to The Sacred Bundle Series with a renewed slant on the lives and problems of Selena, Flyn, and Amach, and now Dreag.

Having a title to ponder gives me a beginning to wrap my imagination around. Plus I have a shorter path to its ending. There was a time when my short stories happened the other way: story first, title last. These  required full-on attention because the plot grabbed me and wouldn’t let me go until it was all written. Luckily they had to sit for a time for mellowing and so I could un-attach from them. Which left me to write more on The Series and return later for an editing process.

“Daffodils in December” has been a puzzle, and it is just about solved. I can tell because another title has jiggled my brain. “Blackberry Dreams” is dancing off stage, and, this time, a shell has found its way into my pocket and is nagging me into a story.

Wholly Whole

I was finally able to walk alone on the beach yesterday. No sense of loss separated me from the crashing surf sending salt spray into the air. Memories didn't tug me into melancholy. I could simply sit and become lost in the movement of the water, an afternoon sun rippling across its surface as seaweed trees bobbed in the wave action of the surf rising and falling.

 Between 1977 and 2010, my visits to the ocean had been shared with my late husband. I've tried walking along the shore since then but the loss of his companionship has not allowed me to feel the usual comfort. Yesterday I could be there and really sit in the moment without a wish or a regret. The moment felt full and ripe in its own flavor. I regretted nothing. I had no need to let any anger or upset bubble up and release itself into the gentle wind. Anxiousness or worry about the past or future did not cloud the simplicity of being in a ‘now’ moment.

 Afterwards I felt no lack, no ‘I should haves’, not one iota of a missed opportunity to work on myself, to be more or less concerned and working out the details of some upset.

  I couldn't tell you what I was feeling before, during, or afterwards this hour in the afternoon sun but something like an emptiness and a fullness at the same time.

  I happened to be on the coast for a four-day writer's conference, jam-packed with critiques, lessons on scene creation, arching plot, characterization, balance of action, emotion, and theme, as well as how to pitch a book to an editor or agent.

   I passed through stages of nervousness, elation, depression, anger, and acceptance. Overwhelm and under-appreciation found new benchmarks. These rises and falls were much like these ocean movements I experienced after the gathering. I didn’t have to hang on to any one of these emotions. They passed as part of the texture of my life being lived in all its glory.

   I learned about my craft, my heart's passion to create a worded piece of art, and found a tribe of like-minded individuals to join.

  I've deemed this year as my 'coming out' year. So far I've begun repurposing a few blogs as monologues and have performed them, sung a solo with a banjo backup in front of over 100 people, developed and performed a five-minute clown sketch, impersonated Meryl Streep, tried out for a play, and offered the last draft of my second novel up for agent critique. That's just the tip of my personal iceberg. Stretching feels good.

  And, the ability to walk along the shore on my own two feet, to feel my body and mind relax into its awareness of self and circumstances without resistance but acceptance reminds me that with time and tide we each can become whole and wholly who we are.

   Today gratitude abounds.