Care Partnering, Life & Living, Love, Spirituality

what it means to be or not to be


To be, or not to be, that is the question—
Whether ’tis Nobler in the mind to suffer
The Slings and Arrows of outrageous Fortune,
Or to take Arms against a Sea of troubles,
And by opposing, end them? To die, to sleep—
No more; and by a sleep, to say we end
The Heart-ache, and the thousand Natural shocks
That Flesh is heir to?

From the play Hamlet, by William Shakespeare 


“Doing” and “being” are sometimes separate and sometimes intertwined. “Being” with somebody acknowledges their humanity and experience in a different way than “doing” does. Doing is about “service;” being is about spirituality and connection. Being with somebody is important to our health because meeting emotional and spiritual needs is as vital to well-being as fulfilling physical needs is.

During the time I cared for my mom, I brought joy and happiness into both our lives by doing things together: gardening, cooking, walking, flower arranging, and more. As her capacity to do these kinds of things declined, I found other ways to help her engage with life: walking in a slower way, sometimes even just standing, singing, “learning” to play the piano and the guitar, rhyming, and simply enjoying each other’s company.

As the disease progressed, we spent more time “being” than “doing,” partly because Mom was unable to do many of the things she had done before, and partly because her needs changed. So what does it mean to “be” with somebody? It begins with listening. By listening I mean being present and paying attention – paying attention to the small details of her physicality and how she was experiencing the world and adjusting my behaviour in such a way that it reduced her anxiety and increased her peace and enjoyment.

I further developed my observational skills. I learned to pay attention to the physical and social environments in which we found ourselves. Was it hot or cold? Quiet or noisy? How were the people around us interacting with us? How were we interacting with them? Not from my perspective but from hers. I became more sensitive to the way she talked. I learned to interpret her sentence fragments and jumbled words and to decipher the meaning behind them. I asked myself questions: What is she trying to communicate? How can I help her to express herself more fully and therefore be with her in her experience in the moment? I tried to discover the underlying meaning of her alphabet soup.

We had conversations in which there are rather long periods of silence. During these conversations I noticed she was still processing information; it was just at a much slower rate. She knew what she wanted to say; it was a matter of finding the words to communicate the thoughts and then helping them to make the journey from her brain to her mouth.

She was more aware of her environment and what was going on around her as well as within her than it might have appeared. I believe that as certain parts of her brain become more damaged and disabled, other parts compensate for the losses. Mom developed what I call “intuitive clairvoyance.” I know this may sound crazy to some people, but I saw clear evidence of it myself.

I watched carefully. I looked for tiny changes in her facial expressions and noted where her eyes moved. I “held space” for her to communicate with me at her own pace and in her own way. I tried to put myself in her world, to see out of her eyes. I listened with much more than my ears. I listened with my whole body and especially my heart. I didn’t rush her.

I asked lots of questions. Sometimes she answered, sometimes not. Often we just sat in silence. Just being together was enough. I believe emotional and spiritual connections as well as physical closeness are important to all creatures, and maybe even more so to the elderly (human and otherwise) as their experience of the world changes. I “read” Mom’s “state” by the expression on her face, the tilt of her chin, the look in her eyes. Sometimes she reached out to me and put her hand on mine or on my forearm or on my face. I may or may not have responded verbally, depending on the moment.

Holding space for somebody by simply being with him or her nurtures the spirit; it helps them to know they are wanted, valued, and still connected to their own humanity as well as the rest of humanity. It’s enriching for everyone involved. I also believe that being with people with dementia means not giving up on them. It means actively seeking out whoever they are now, and connecting with them on whatever level they are able to connect. It means providing them with  opportunities for growth. For me, it’s not about mourning the loss of the person they once were; it’s about seeing and acknowledging the person they are now, as well as the person they are transforming into. It’s about validating their experience and process. I believe we change and evolve until we die. It’s important to be with each other in real way until we are no longer in this place, because being together feeds the spirit, and when the flesh is no more the spirit lives on.

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