When Words Fail Before All Is Said And Done

I Keep Looking But I’m  Not Sure I Know What It Is                                                                                                 photo via Shutterstock

It’s been two months since I last wrote about my 1/2 sister’s ‘internment’ at the Extended Care Facility, her life-limiting diagnosis, and enrollment with Hospice services.  What I thought was a peaceful acceptance brewing turned out to be more like an anger stewing in a witch’s cauldron,  smoking with an infusion of frustration because of increased aphasia: an absence, or impaired ability to communicate through speech, writing, or signs because of brain dysfunction.  Recall the feeling when the word, name, or thought you want is lurking far from the tip of the tongue, you know it’s there…someplace…and yet, it’s just not coming.

Sis’s aphasia is variable. Sometimes she’s very clear as in “Can you understand what I’m saying?” and that was the only thing I understood clearly.  Other times the words are halting, garbled, or inaccessible and the recourse is gesture, soon followed by the whole body effort to communicate.  There is no real understanding ‘why’ this aphasia has increased so much, so quickly.  It could be a series of ‘cerebral vascular injuries’ (small strokes). It could also be a side-effect of one or more of the meds she’s taking, and she only takes 3 routinely and two ‘as needed’.  A nurse friend suggested the possibility of ‘metastasis to the brain’ (a spread of the cancer).

We may never know.  We’ve been through the med adjustments, and the almost 2 weeks of drooling and marathon sleeping which I had hoped was therapeutic.  I don’t interfere with her medical care. I ask only if there are any changes medically or behaviorally.  There’s a lot going on within my sister, and I’m trying to figure out what she’s trying to say.

The All You Can Eat Helplessness Buffet

One of the several ‘preparing for death’ practices that Stephen Levine suggests in “A Year To Live” is the one in which we imagine ourselves as physically helpless in one or more ways.  Really Imagine.  A quick mind-picture doesn’t count. Maybe it’s as simple as allowing yourself to be fed a whole meal, or three.  If you’re very adventurous allow yourself to be transferred out of bed into a wheel chair, retaining control over only your head and shoulders.  These are relatively easy, presuming there is someone on whom you can depend to do for you what you cannot do for yourself.

For the X-treme Athletes of Imagination, what does it feel like to not be able to communicate your needs, wants, thoughts?  Feel the isolation of saying something and having no one understand what you’re saying.  You’re stuck. Alone. You and your Mind.  My sister is not totally in that place but there’s no telling how slippery a slope she may be on.  And the words that are spoken clearly, and confirmed by my repeating back what I heard and understood, are quite disturbing.  So much so that I had to design an experiment to, perhaps, figure out what was going on.

Before I Wanted To Be A Hermit, I Wanted To Be A Spy, So Spy I Must.

During every visit, Sis would go through her now well practiced diatribe: “You have to get me out of this place.” “I’m going back to Manhattan.”  “I CAN live by myself. I can cook sauce (pasta sauce).” “You wait and see!”  All with accompanying gesticulations and spittle.  I had to implement the drastic measure of no pizza eating until after she had her say. Aphasia is one thing.  Combined with chewing pizza it can be just gross.  And in response to the reminder that she begged me to move her up here, the retort is “I changed my mind.”  I’m thinking “She’s losing her mind” but I’m in for the duration and trying to ‘Do The Tau’ at every surprise.  Relying on my therapeutic skills, with Jedi focus and zen calm, I go through the situation again with honesty, authenticity, integrity, and love.  It is not in the realm of current possibility to reverse time or circumstance. I also communicated that it was no fun at all visiting her as long as she had a single track rant,  and asked her to consider if there was anything at all that she could be grateful for.  The response was a resounding, head shaking, “No”.  “What am I? Chopped liver?” remained unsaid. I told her I would visit no more than weekly, for awhile, and the experiment proceeded.

First: Enlisted the help of a close friend and Hospice volunteer visitor to visit my sister as a friend of mine. This would give me another set of eyes and ears to see how things are going when I’m not around.

Second:  I took to visiting the Facility at many different times of the day. This gave me a chance to see the environment with different staff, and to see my sister without her seeing me aka the spy part.  I ducked into rooms and behind laundry carts.  I left stuff for her, often with a note. Pizza, chocolates, a new pillow, chicken barbeque, with ‘the works’.

Third: Check-in with many different staff, on different shifts, to get their reports.

Executive Summary

I witnessed the almost 80 yr old woman cruising the halls in her wheel chair; attending activities downstairs, generally the ones involving animals; denies pain; has reasonable appetite; TV tuned to Turner Classic Movies; no interest in news, radio, music, magazines, or other people. I could have been in the elevator with her and she wouldn’t have noticed. No ranting or raving reported by others.

Each face-to-face visit we had involved my sister singing the same old song.  This last visit had a surprise addition to the score.

Have You Ever Hallucinated? Ever Been In Someone Else’s Hallucination?

It’s quite the experience.  Hallucinations among the elderly are fairly common in the hospital, especially if one has been in the ICU.  Many are side-effects of medications, some are pathological.  Whatever, it’s important to respect what the other is reporting seeing.

This most recent visit with my sister has been the most perplexing yet.  The script started as usual: “I need to talk to you.”  Progressed to the demands to ‘get me out of here’, etc.. Plus a new, “you’re going to let me die here”. Then, clear as crystal: “Why are you tormenting me?”  Followed by repeated jabs pointing over my right shoulder (where there’s a wall and the edge of a curtain hanging), and repeats “There. Look.”  I confess, to her, that I’m not seeing anything and encourage her to describe what she’s seeing. I am very interested in what she’s trying to communicate.  She could not describe what she was seeing.  No words. Not even garbled ones. No gestures.  The Slough of Despond. Shoulders bent beneath the weight.  I had nothing also, except pizza.

I Just Don’t Know

I’ve heard it said that all angry people believe they have been mis-treated.  That resonates with me and my sister seems very angry.  Even tormented. I suspect a connection between her anger and me but, beyond that, not a clue.  I think it’s more than a mitzvah gone awry. I think that maybe she’s never done a good life review.  I suspect that she has a heap of unfinished business.  I hope that she’s doing some of that work now, and that she finds resolution and peace.  In one of my imaginings, my sister is seeing Death over my shoulder, and she’s warning me.  Who knows?

Train The Mind While You Still Have It

A large part of preparing for a good dying is the Life Review. Lest you get the wrong impression, this could be Lifetime’s Activity. It becomes fun and eminently fruitful when we develop the skill of observing our own thoughts and feelings objectively.  The Mind observing itself.  Quick example.

I woke up. Got out of bed and proceeded with routine. By the time my foot hit the last stair I noticed some feelings of discontentHmmm.  Followed rapidly by inadequacy, so-and-so is *!##^&*, I’m ugly, and yadda, yadda, yaddaSimultaneously, another part of the Mind is reinforcing the desire for peace and acceptance. This other part also recognizes this as an old ploy, and it waits and watches for the thoughts and feelings to pass.  It took about 15 minutes of walking outdoors, focusing on the breath, and the intention / choice to stay calm and balanced, but the uglies left, there was nothing holding them in the Mind.

I suspect that more people do this, naturally, than is sometimes thought.

How do you check your mind? Just watch how it perceives or interprets any object that it encounters. Observe what feelings-comfortable or uncomfortable-arise. Then check, “When I perceive this kind of view, this feeling arises, that emotion comes;  Why?” This is how to check your mind; that’s all. It’s very simple. When you check your own mind properly, you stop blaming others for your problems.    (from Your Mind Is Your Religion by Lama Yeshe. Tricycle Magazine Wisdom Collection)

Will Keep You Posted

and I’m sure this is not a particularly unique caregiving experience. What’s your story?

The Mindful Dying Facebook page is a collection many relevant articles, videos, etc.  Enjoy.