Monthly Archives: January 2016

Reading aloud, saying goodbye to our home, and dog tales.

As we walk along the hallway, the resident whose arm I am holding begins to speak Chinese to me. She speaks fluidly, without pause or hesitation. And what strikes me in awe (not the least of which is her effortlessly spoken Chinese when I comment to her that I was in China recently) is that ten minutes ago when I asked her to join us at the reading session, she had no idea what I was talking about – even though she attends our session every Friday afternoon at two, and has done so for many weeks.

What a mysterious organ we possess in this thing we call brain.

The resident’s ability to remember some Chinese phrases (someone taught her them years ago, she tells me) is still intact, yet a recent activity that she has enjoyed with us for a number of weeks, she has no recollection.

“What book are we reading?” she inquires. And I remind her that we are reading Marley and Me by John Grogan. I recap the story for her – a story about the author’s dog, a Labrador retriever, who is kinda goofy or daft, and is accident-prone due to his love of …well, everything! That makes the resident laugh and she confides that she thinks that she will love this book because she likes dogs. I want to remind her that she has enjoyed the book – she reiterates that fact every week and also informs me (each time we read together) that the author is an excellent writer. My gut tells me that she is extremely well-read and intelligent: I suspect this because of her smart and thoughtful comments about the author’s writing and the story itself.

A few months ago when I sat with another resident and recorded her story and wrote it down for her (and her family), I discovered that my resident friend loved to read but no longer does because of physical restrictions. She, like many other residents, no longer enjoys reading because she cannot physically hold the book. A stroke and the complications and aftermath of the stroke now restrict her from many activities, such as holding a book or turning the pages.

But in the resident’s life story I learned that one of her fondest memories was reading aloud to her mother during the Second World War…reading aloud (sometimes by candlelight) while her mother sat close by, knitting or tatting lace.

Her memory ignited one of my own – the many times when I read aloud to my sons when they were young. A voracious reader, I read everything and anything to them. Many a five am feeding would find me reading the back of a cereal box as my sons didn’t particularly care what I read aloud – as long as I paid attention to them, and the words sounded melodic or rhymed. (Heck, you can sing the ingredients of a loaf of bread aloud and your tiny audience will smile and coo at you.)

So reading to the residents of the long-term care facility (where my mother used to live for two years) seemed like a natural extension.  When I proposed my idea to the activity director, she was delighted.

Reading aloud to someone has a very calming effect, I have found.  Many of the residents that I bring down to the reading room (formerly known as the computer room or as my mother termed it, “the room at the end of the street”) are in wheelchairs; some have had strokes and now have physical and language impairments; some have a dementia – some are in early stages of a dementia and others are in later stages; some are responsive and some are not. But the ones who are particularly agitated and do not sit still under most circumstances are the ones that I notice sit quietly when I begin to read.

The benefits of reading aloud to someone are plenty:

  • benefits mood and increases well-being
  • stimulates memories and exercises the brain (sensory stimulation)
  • encourages a resident to reminisce
  • reminiscing can reassure a resident that their life had meaning and significance
  • sharing time with others (engaging with peers)

The benefits for the reader are also significant: I have learned that while reading aloud I am forming new neural pathways in the brain. Bonus! Apparently reading aloud also sharpens my focus and comprehension. When I focus more intently, I am living fully in the present. Reading aloud allows me to be more mindful – that’s a benefit that I embrace!

I Googled suggested book lists for seniors and there were many book titles for those who do not have Alzheimer’s or other dementia-related diseases. I learned from some Alzheimer’s sites that reading poetry aloud is as soothing as music therapy. A couple of my residents did not want to listen to poetry, but I stored that suggestion in my “vault” for a reading  one on one  project, perhaps in the future. Some of the books suggested were not appropriate for my group, either because they were too explicit, too graphic, too many deaths or too gloomy.

Should we read a classic? A short story? An article or story from a woman’s magazine? Or, should I read one of my own personal favourites? Since Crime and Punishment is my most beloved book, I nixed that idea quickly (alas, no Russian literature lovers in my group). Some residents have hallucinations and paranoia and are particularly vulnerable to suggestions. Even news stories on the television upset them and blur the line of reality and fiction for them, so I didn’t think the murder of an old woman was appropriate.

I also think the stories based on the veterinary surgeon from the Yorkshire Dales, James Herriot’s  If Only They Could Talk (once a popular series on television, All Creatures Great and Small) might fit my reading needs.

So off to the library to further my research. One of the librarians is intrigued with my quest for the perfect book and so she begins to make suggestions, too. She takes me to a section where all the books are dog-inspired tales, and the two of us begin to read opening chapters.  Dog tales or animal stories are often easy to relate to and usually full of humour and so are important features when reading aloud to seniors in a long-term care facility.

We discard a few titles. And reluctantly I dismiss James Herriot’s books. There is not enough action, I think. Wait! Do we need action to hold their attention? Yes. Not a lot, but some. The librarian is younger than me and she winces when I read aloud a few lines of Herriot’s book. “Too dry,” she declares. (Hmmm…I am truly glad neither of my parents heard that remark. The television series based on Herriot’s books was one of their all-time favourites.)

I finally decide to go with Stuart McLean’s Vinyl Cafe series. Two reasons: Stuart McLean has been reading from these beloved books for nearly two decades on CBC Radio. If someone can read a book aloud on the radio – and keep his job for nearly twenty years – then he must have his finger on the pulse of the masses. Right? Second reason: I found a couple of the Vinyl Cafe books in my mother’s book stash after she died. You know that I trust synchronicity! Enough said.

The Vinyl Cafe series are collections of short stories about a man who owns the Vinyl Cafe  (a record shop) and his family which consists of wife, two children, a dog and a cat. And his mother. And his neighbours. And the townsfolk.

I read a few of the stories and my audience likes them. Well, okay. Like is perhaps not the word I should choose. The reviews are mixed: Some have fallen asleep and some seem riveted to their chairs. Some have to leave because they need a bathroom break (and they do not return…I blame the staff for that!) and some leave because their loved one has shown up and visitors always (always!) trump a volunteer who is reading aloud to them. (And so it should.) And I also learn that what I think is hilarious – they do not. (What? No laughter at a cat who teaches himself to flush the toilet? Oh, come on.)

But here’s the beautiful thing. After reading a number of stories for a few weeks, and not receiving any good feedback (to be truthful, I do not receive any feedback), and just when I think it isn’t making any difference to their quality of life – something wonderful happens.

I was reading from Stuart McLean’s Vinyl Cafe series, the short story Margaret Gets Married, when out of the corner of my eye I notice movement – a number of the residents are now sitting on the edge of their seats, their bodies erect; those sleeping, woke up. The story is about the main character’s mother’s decision to re-marry – when she is in her 80’s. That caused a little stir in the room. Then, the man who she is dating decides to propose and wants to pop the question at a romantic place – so he chooses Margaret’s childhood home where she no longer lives as the location where he parks his truck and pops the question. Margaret hasn’t visited her childhood home for years so she is mystified why they have come to the site. But she is thrilled to re-visit it and fondly reminisces.

The residents are now excited and begin to tell me that they did not have the experience of re-visiting their home before they came to the care facility. Some are telling me about their family homes; some are smiling at me. But nearly everyone in the room is fully engaged with the story – even those who are unresponsive. They have woke up and are on high alert. (See, that’s the magic: even when you think no one is listening, they are!)

Afterwards I mull over what their responses were to the story and I am puzzled until I remember that someone once told me that her biggest desire was to go home –just for one last time to say goodbye. When someone who now resides in a care facility tells us that she wants to go home, we worry about dredging up the past and we worry about tears, grief and sorrow. But what if a visit to the family home signified the ritual of saying goodbye, a last farewell? A short visit to the family home to honour it and the memories – shouldn’t that be a rite of passage? I think so.

During the reading of Margaret Gets Married, I touched a nerve. Nearly everyone responded to that story in a way that I couldn’t have foreseen. Upon reflection, I believe that all of us (dementia or not) have strong ties to our childhood or family homes – these are the long-term memories that stay intact until the end of life and often are the last to disappear when someone has a dementia. And these are the ties that shape us, that influence us, that create who we become.

Childhood homes, weddings, second marriages and a bride who is in her 80’s – all topics that the reading group responded to.  Stuart McLean nailed it. And the short story has humour, too.

We laugh along with the antics of the townsfolk who want to support Margaret but try to take over/hijack her wedding plans. In the end of the story, Margaret’s wisdom and just plain good sense prevails and she gets the wedding that she wants, not the townsfolk. Clearly, Margaret is a credible hero to this group of residents.

Excerpt from Margaret Gets Married, Extreme Vinyl Cafe

She danced the night away.It was her wedding after all. She had already had for better or for worse, for richer and for poorer, in sickness and in health. This was the part she had given up on. This was happily ever after.

Marley and Me is winning over the residents, also. The outrageous antics of this goofy dog is too funny and I find myself laughing throughout the chapters. One thing that I have learned is that twenty pages is the limit for our group – more than twenty pages and too many lose interest and fall asleep. An hour of reading is optimal, ensuring that I read slowly and pause at the funny parts. On one occasion I read two short stories (not one) and a resident succinctly informed me that “two stories are just too confusing. Don’t read two again.

Sometimes I ask questions to initiate a discussion within the group.  Last week we read that Marley wrecked havoc in the home because of his deep-seated fear of thunderstorms, so I inquired if anyone had owned a dog that was terrified of thunderstorms.  Most had owned a dog at some time so many had funny stories to share. And a couple of residents just told me stories that were not the least bit related to dogs. Or books. Or reading. Reading sessions have taught me to just go with the flow. It’s more fun then. Besides, that is the true essence of mindfulness:  Just be. Don’t edit. Just be.

And always, always my group tells me like it is…”you are reading too fast,” “you are reading too slow,” “I am confused,” “what’s the name of this story?” “are we going home soon?” “when can someone take me to the bathroom?” and lastly, “when is this over?

But once in a while, a daughter of one of the residents will tell me later that her mother enjoyed the story, or that her mother likes to attend the reading group. And that is enough.

  • McLean, Stuart. Extreme Vinyl Cafe (Toronto: Penguin Canada, 2009).
  • Grogan, John. Marley & Me  (New York: HarperCollins Publishers, 2005).

 

 

 

 

 

 

 

What happens when we cannot accept our loved one’s prognosis?

snowdrops always return in the early days of spring - a sign of hope and re-birth

snowdrops always return in the early days of spring – a sign of hope and re-birth

Your mother probably has Alzheimer’s or a dementia-related disease. There is nothing that we can do for her. She has broken her hip and her wrist and after her bones have healed, we suggest that she cannot live alone. You should put her name on the list for an opening at a long-term care facility. You are probably looking at a wait up to two years. In the meantime, she will stay in the hospital.

Words that sounded familiar – an echo of a similar conversation that we had when my father fell on the stairs and an ambulance took him to the emergency department of the nearest hospital. At that time, 3 years before my mother fell also, my dad lived at home and my mother, sister and I cared for him. He was not diagnosed with Alzheimer’s but we knew that he had the symptoms; my mother refused to take him to the physician to be assessed. She denied that he had a dementia-related disease.

But after my father died, I knew in my heart that my mother was showing many signs of dementia, herself. My dad’s death had transformed me – love, compassion, kindness and other lessons from my journey of caring for him – and so I was able to accept my mother’s illness more readily, without the burden of guilt, resentment, anger and denial. Those were emotions that travelled with me when I cared for my father. I lived in a world of bewilderment and hurt during that journey.

When my mother had to go to a long-term care facility, we faced the difficult decision with an open heart and we accepted the reality. We did not fight it as we had when my father was ill. We accepted that we had nothing left over after his death; we had little time to refill or replenish ourselves. The well was empty. And we cannot look after someone else when we are not whole ourselves. That is a lesson that still resonates with me today.

There is nothing that hurts us or our loved one more than our non-acceptance of a diagnosis or prognosis. Nothing.

I have learned when we accept the reality of the illness (and what it means in the future) fully and completely, we open up our hearts and our minds to living today, and not wallowing in death and dying.

There is a world of difference, my friends. When we do not accept that our loved one is ill (that he has a dementia-related disease) we live in denial and that leads to a myriad of emotions, none of them loving or compassionate. Hurt, suffering, pain, sorrow, resentment, anger…all of these emotions arise (and it is natural for them to arise) but we cannot let go of them when we live in denial.

And in the process we begin to hurt our loved one. Our sorrow or hurt spills over and touches them. They will feel our energy – an energy of a stewing pot of negativity; not one of love and compassion.

Our loved one will feel ashamed and full of self-blame. He will begin to constrict and instead of being open and sharing his emotions and fears, he will do the opposite – he will keep them close; he will hide them. In our non-acceptance of the disease, and in our anger that our loved one is losing his cognitive abilities, we close the door to an open and loving connection.

When I learned to accept that my mother, too, had a dementia-related disease, I vowed that now that I knew better, I must do better (Maya Angelo) and so I let go of my fears and tried to live in the Now. I vowed to visit her often (between my sister and I we visited her daily as we rotated visits – three days one week, four days the next) but never walk into her room with negativity. I left those doubts and fears in the parked car. When I visited, I went with no expectations, no hidden agendas. Just love and compassion. Whatever greeted me as I entered her room, I accepted.

Sometimes we sat outside in the garden and listened to the birds, and other times we sat in the activity room listening to music, or attending the music therapy sessions. We sang hymns together and laughed with the other residents.

When I cared for my father, there was not a lot of laughter or singing in our home. We carried his illness around and rarely laid it aside – we were sad and I often found myself crying in the bathroom, when I found five minutes to finally be alone.

I look back on those days with regret that I did not accept his illness – all those days wasted in fear! If I only had learned to accept my reality, instead of resisting it every day.

But I have come to a peace about that time. In retrospect, I realize those days made me who I am today. The lessons (I call them gifts) from my journey have transformed me.

My compassion that grew during those days and after have allowed me to live a life of joy in living in the present moment; finding solace and comfort within at any time; living in mindfulness each day; finding my true self. I have learned compassion for others and for myself. That compassion has led to less judgment and more acceptance of others and for myself.

I have accepted that I am imperfect. I have accepted that when we look after a loved one who is ill, we will find peace when we accept the moment as it is. Sometimes that will mean sadness and grief layered upon regret that time is running out. We accept that, too.

The peace comes when we accept the truth of the Now – the reality of the present moment. We suffer when we look away or deny the reality. Or if we try to take control or manage the Now. We cannot control illness – we cannot change the prognosis. No matter how much we love someone, we cannot cure them. (Let that thought go.)

But we can change the energy that surrounds us. We can control our thoughts.

Our loved one who is ill wants only one thing from us – he wants our acceptance of him as he is right now, even ill. He wants to talk about his fears; he wants us to let him know that we will walk this journey beside him; that we have his back.

He wants to know that he still matters. When we sit beside him, when we listen, when we laugh with him, when we share the present moments (watching a sunset together, listening to a choir or a guitarist, hearing the birdsong, reading aloud, sharing a cuppa) …this is how we allow him to know that he still matters to us!

Just listen. Let him express his fears and frustrations. We are not here to cure our loved one. We are here for one reason only: to love.

Love has another name: Acceptance.

Let us not shy away from the gravity of a diagnosis or prognosis – but let us lean into it. Let us express to our loved one (in our words and in our actions), You are loved. I am here for you. I have your back. We will walk this journey together. You matter to me. You are not alone. Let’s enjoy the present moment…together.

All gifts.