Tag Archives: life stories

Your words, not mine; your stories, not mine.

Sunset over Charlottetown HarbourI am watching my resident sleep. I’ve been sitting beside her for fifteen minutes now, and the staff members assure me that she will be awake shortly. She doesn’t usually nap at this hour, they say.

I don’t mind as I am narrating a story in my head – all quiet moments are gifts of time.

The last couple of weekly visits have changed – the routine of greeting my resident, talking for a few minutes to reassure her of the reason for my visit (I am recording and writing down her life stories and memories), turning on the recorder, and prompting her with a few questions to stimulate her life stories has disappeared.

Lately, during our visits I notice that she is either very drowsy or somewhat confused, and conversations about her family, childhood, school antics or young married life have dried up.

I have had to adapt, and I no longer ask her questions or give her prompts. Only a month ago I had inquired about her grandchildren and she had responded with a lovely story.

But not today.

When she awakes, I have to remind her who I am (Gwen’s daughter – you remember Gwen – she lived across the hall and you shared many cups of tea together) and she smiles her beautiful smile, and although I can read on her face that she is happy to see me, I sense that she no longer remembers Gwen (or me).

So I try again. More confusion.

In my cloth bag I have a copy of her life stories to date, so I retrieve the typed pages which are in a plain, three-ring, navy blue binder. I place the binder in front of her on the lap tray of her wheel chair and open it to the front page. I have learned an 8” by 11” binder is easily held by a senior.

She stares at the page for a very long time, and I am leaning over to close the book when she reads aloud her name and the words, “Life Stories.”

She looks at me and grins, and I urge her to turn the page.

She begins to read her very own, unique stories of her past. Unexpectedly, I note that she is a good reader and am thrilled because I didn’t realize that she still possessed the ability to read. My own mother had difficulty reading when her dementia progressed, and eventually she lost the ability completely.

I remember the October before my mother died in December, she signed a birthday card for my sister that I had purchased for her. I asked her if she would like to sign the card herself, or would she like me to sign it. She answered (as I knew she would), I can do it myself. She spent a few minutes gathering her strength to sign the birthday card to my sister, Sue. Then, she scribbled (almost illegibly): Love, Sue, instead of Love, Mom.

I loved that card. Because her intention (love for my sister, Sue) was so beautifully evident.

I draw my attention to my resident: She is reading aloud her stories…she pauses at the funny parts to look at me and remind me, that happened to me, also. I realize that she is not completely aware that these stories are hers! I keep re-assuring her that they are her stories, and that I only transcribed them. I keep repeating: your words, not mine; your stories, not mine.

When she reads aloud, she re-reads many of the passages and so I lean over and begin to turn the pages, but she stops me, and goes back to the top of the original page to re-read the story. After 45 minutes, we have only read two pages. I begin to panic and worry that we will never get to the end of the book at this rate.

But then I see her face. I begin to really see her face and read her energy. In that moment of being present (truly present) I am aware that she is completely entranced in the story – her story! She is smiling and nodding her head, chuckling (oh, yes, her stories are funny) and then I have an aha moment. My resident is in the moment.  Her moment! She is oblivious to the natural bird sounds outside her window; she is oblivious to the staff who are talking, and pushing carts in the hallway – the noises of life in a long-term care home are a muted constant 24/7.

My resident is in the moment. Time has ceased. Her face tells me that she is a young child again, living a life of scarcity and hardship, but filled with family love, laughter, and richness.

One thing I have learned when transcribing life stories of the residents is that our memories evolve: they don’t change completely, but we, as humans, re-paint them. We brush over the memories that hurt us, or caused us pain. I, too, find that over the years, my hurts and disappointments have been watered down – I have lifted out the colours that no longer serve me.

Like others before her, my resident’s stories have been blended with other experiences and the passage of time, and now understanding and forgiveness is the rich palette that remains. Through the lens of our journey we perceive our parents’ weaknesses, as strengths; their mistakes, as lessons. A gruff father who never spoke of emotions (or feelings) to his daughters becomes the ninety-year old man with Alzheimer’s who never speaks, but utters, I love you to both his daughters whenever they leave the room.

Through him, I learned that disease, dying, and death are powerful teachers. Forgiveness, reconciliation, love and peace are potent change agents. They transform our stories – blending, layering, pulling out colour, until bleeding the stories into one.

Through the process of reminiscing we begin to connect the dots starting with the point of origin to the last dot You Are Here.

These are the insights I have gathered, and these are similar to ones that I hear time and time again from the residents who I sit with. In the telling of our stories, the bad bits get left out and the good bits grow, and we are left with a richness that we had never seen before – colour laid upon colour. A richness that inspires gratitude.

When a resident comes to the end of her life story, I often hear:  I’ve had a good life. Those were wonderful days and I feel lucky to have lived them. I’ve had a good life and I am at peace. I am ready for my final journey. I am content.

Still reading the first few pages after an hour, I eventually tell my resident that I have to leave, and I know that she is disappointed but she closes her book as I promise to leave the binder with her. Yes, I still have lots to read, she informs me, and she adds, it’s a good story.

My intuition tells me that the time has come to end our weekly sessions – she no longer has new stories to tell me. I believe her stories are still there in the recesses of her mind, but they are not accessible as they once were. Like a locked filing cabinet, I no longer hold the key to open it.

When I leave, she grabs my hand and closes her other hand around mine and gently strokes it. Thank you, she whispers. Please visit me again.

I will, I promise.

As I walk through the hallways of the long-term care home, I am reminded once again that the only thing that really matters is our presence. As humans, we all want to know that we matter – that our lives are spent well – whether we are young or old; healthy or not.

And I am reminded that gratitude, above all else, matters, too.

 

 

 

 

 

Why continue to blog?

For the past few weeks, I have not blogged much. An intended short respite from blogging became a two or three-month break.

Since my mother (and my father) have passed away, and I no longer care for parents with Alzheimer’s, I have struggled with my new blogging role. Yes, I still blog about people with Alzheimer’s or a dementia-related disease, but I also am finding that I return over and over again to the topics of mindfulness, awareness, creativity and expansiveness.

I wonder if I am defining myself as a carer, when I clearly no longer am a carer. That part of my life is over.

I have friends who think I volunteer at the long-term care facility where my mother lived for more than two years for the sole purpose of hanging on to my past. That is, they wonder if I am still clinging to my role as carer for my mother and father when they had Alzheimer’s.

They make a valid point. When a person’s role in life is a full-time caregiver, it is natural and human to feel a loss of identity once death ends that role. I understand that.

My friends mean well. I know that.  But when I listen to their words of concern, I always counter with I am where I am supposed to be.

I know this without any doubt.

How do I know? Because when we are doing something we love, we feel such joy. I visit the residents who have Alzheimer’s or other dementia-related diseases (and some do not have any diseases – their bodies are just slowly breaking down) and I receive many gifts from them. They teach me patience, wisdom, strength, compassion, generosity and more. I find myself laughing out loud to their insightful remarks or clever retorts; yes, Alzheimer’s does not rob them of humour and laughter.

I have learned to pay attention and listen more. (To listen is my 2016 intention.) I have honed my mindfulness practice. I have learned to just go with the flow – not to take things personally or to react when a resident screams at me or turns on me. I quietly respond or I walk away and find a personal support worker. (My cardinal rule is: I am not here to fix anybody or cure them.)

And I have learned to stay in the present moment – to give up expectations. Expectations is about living in the future.

And I have learned that impermanence is the only constant in life, and while I still dread death and disease just as others do, I am accepting change more easily. Living in the now and being filled with gratitude eases my fears.

So, when I think of my volunteer work I know that I am living a purposeful life – one that I would never have realized if it were not for caring for parents with Alzheimer’s.

My past journey has led me to this new journey. And so I have learned to trust life, even in my darker moments.

Many years ago while watching television,  I heard a group therapist say,

“Every time you tell your story, you give away a little piece of the pain.”

According to this therapist, telling our story (owning up to it, accepting it, and saying it out loud) is the basis of healing.

When I volunteer at the care facility and visit with the residents, I am capturing a little piece of each of them. With luck, I will have a better understanding of who they are now and who they were in the past. I have found that the more they learn to trust me, the more they are willing to open up and share their story. And when they share (even a small chapter of their life), I can visibly see the impact on them: they relax, they smile, they sigh, and sometimes they shed a tear. I have learned that everyone wants to be heard. And to know that they matter. It’s universal. And I have learned that when we are listened to…we heal.

When I sat and recorded, and later transcribed, one of the residents’ life story, I was struck how much I became connected to this woman after I learned of her story – where she came from, how she got to Canada, how she built a life and family here; her sorrows, and her joys. I felt such a connection to her when we finished her life story. And still do. I rarely miss an opportunity to visit her when I volunteer. And I know (because she has told me) that she feels the same connection to me. I am grateful.

When I visit the residents, I hope that each of them knows that they matter just as they are. Many of them are at the end of their journey – they are in the last innings of the game (as my baseball-loving husband would say). The last stages of the residents’ lives are as important as the last innings, albeit for different reasons. Last innings are about last chances to win the game. In life, last stages are about reconciliation, forgiveness, and peace. On second thought, perhaps not so different, as peace is a powerful win.

I have a hope or an intention that everyone can understand Alzheimer’s with more compassion and kindness. It is such a misunderstood disease; no wonder because it is complicated, complex and incurable. It is mysterious: Why do some have severe personality changes, and others do not? Why do some become violent and angry, while others recede and become quiet? Why do some talk more (in early stages), while others fidget and cannot sit still? Why are some residents (seemingly) normal during the day hours and yet affected by sundowning during the evening hours (their moods swing or they become cognitively diminished)? Our brains are not one-size-fits-all.

That just scares the hell out of all of us. So we cringe when we even just hear the word dementia. My mother used to react to the disease cancer in much the same way.  She would lean into my ear and whisper,”the C word.” Strangely enough, even with Alzheimer’s and living in a long-term care home, she would whisper to me, “Poor man. He has the C word.” Bizarrely, she didn’t realize that she, too, lived in the same place that he did, with another disease that people whispered about.

So I write about my experience with caring for parents who had Alzheimer’s in this blog. Not because I am an expert; not because I have any answers. My journey was difficult and I struggled with it.  But I had a second chance to do it better.  And so I did. And that made all the difference in the world.

And I write about my encounters with the residents at the long-term care home so that people will understand that they do not lose their essence when they have Alzheimer’s or other dementias – they are still here! If a reader learns nothing else but that someone with dementia still matters, then my intent is fulfilled.

If I can change my thoughts and accept disease and learn to live with it in loving kindness, then anyone can. And I believe that we need to accept the disease, so that our time with our loved one can be one of quality and love, not fear.

So I write about mindfulness and acceptance because that is how I changed. And I write about creativity and joy because that is what I experience now. Who knew that my journey would lead to such joy and expansiveness? But I shouldn’t be surprised: Compassion and an open heart always leads to more love, more joy, more insights. Joy leads to more gifts.

When we share our gifts (no matter what those gifts are) we connect to other people – and that is how each of us makes a small (but significant) change. And I believe that is how together, we will heal humanity and our Earth. One person’s small act at a time. One small connection at a time.

We change the world when we realize that we cannot change the world. We can only change ourselves.

“Yesterday I was clever so I wanted to change the world. Today I am wise so I am changing myself.”   Rumi

My blog is a small act. And so just for today I will continue. Tomorrow – we’ll see.

But here’s a last thought: Am I not still a carer? Are we not all carers? Are we not all caring or protecting or comforting someone or something? Are we not all carers of our earth and humanity?

 

 

Dying and the heart sutra

Peace. Harmony. Laughter. Love.

Peace. Harmony. Laughter. Love.

I can hear snatches of conversations out in the hallway. A man’s voice is asking where are the balls?, a woman’s voice is insisting that she hasn’t paid for lunch while another soothing and calm voice assures her that your pension pays for lunch.

Peace. Harmony. Laughter. Love. I have been repeating those words over and over since I arrived at the long-term care facility where I have been asked to sit with a resident who is dying.

Peace. Harmony. Laughter. Love. It is a heart sutra that one can recite while meditating. I feel it is appropriate to meditate on these words while I sit here.

In the hallway life continues. Life has only slowed down in the confines of this room. The door is open and now I hear the medications wagon roll to the room next to the one where I am sitting and I hear the tap, tap, tap as the charge nurse counts the pills, and I recognize the familiar noise of the pills dispensed into a paper cup. Now she pours the water into a Dixie cup. For sanitary reasons, everything is disposable in the long-term care facility.

I recognize the soft padding of footsteps – silent, rubber-soled shoes of residents and staff. For a macabre moment, flashes of the “sidler” from an episode of Seinfeld enters my consciousness.

Thud. Thud. Wheelchairs on rubber wheels are quiet and unobtrusive as residents propel themselves with their feet.

A resident yells. Quick steps. More soothing words. A quiet blankets the hallway for a few minutes.

A resident’s footsteps are hurried; later, he returns, still hurrying. Again, he repeats the trip down the hallway; and again, returns. The repetition of his hallway journey seems never-ending. The resident’s dementia is relentless and won’t let go.

The man who was looking for the balls wanders past my door – he is now carrying a basket of brightly coloured balls. He, too, repeats the trip past my door, over and over.

The resident who I am sitting beside is still. I look around her room so that I can understand her a little – rooms reflect our personalities, our families and our loves; therefore, rooms are autobiographical.

The machines that were stationed beside her bed are gone – they are superfluous now. My resident is on her final journey – one that is solitary, bereft of things and stuff. This is life at its basic core – she is becoming a shell. Soon she will be formless. Spirit.

Peace. Harmony. Laughter. Love.

The sounds of the hallway. And the silence and quiet in this room. Side by side.

Life and death close by. My mind wanders to my mother’s death. She, too, lived and died her last moments here in this same facility, although in another area of the building.

No one disturbs us. Occasionally the staff check in and linger for a few minutes. Often they whisper words of comfort and love into the sleeping resident’s ear. Their words move me.

I am always humbled when I recognize that words of love come easily when we visit someone who is dying. If only those same words flowed so freely when our loved ones were well and healthy.

Another resident down the hallway is anxious; she is beginning to confront other residents and now they are agitated. But a staff member has intervened and all is well. A few simple words and calmness reigns. Another potential crisis is diverted – peace. Words of comfort heal many sores.

Peace.

The resident who hurriedly travels back and forth, up and down the hallway has been re-directed to “dust” the hall rails. He is completely transfixed on his task and is polishing the rails until they glean. (There are a myriad of rails to dust – he should be occupied for some time.) Happy to be of service, his face is set in determination and purpose.

Harmony.

A personal support worker (P.S.W.) stops to visit our room. I ask her a question about the resident’s life and she captivates my imagination with tales of the resident’s assertiveness and joie de vivre. We laugh together as we honour this remarkable woman’s life story.

Flash cards in my head. I am remembering my mother’s death: as staff and residents filed into her room to say goodbye, they each took time to tell us stories of our mother (humourous anecdotes) that filled us with tears and laughter. Colour loading: two strokes of paint, one colour beside the other colour, side by side. Laughter. Tears. Joy. Sorrow.

Laughter is a lifeline: it tethers us to one another.

Laughter.

A husband pushes his wife’s wheelchair past our room and I recognize him as he and his wife are often at weekly bingo. He is hunched over and moves very slowly. Very slowly. He is like the many other husbands and wives, family members, who care for their loved ones with dementia. Daily visits that last from early hours until bedtime. That is the norm.

When you volunteer at a long-term care facility long enough, you begin to recognize the unsung heroes in the home. Their health is often jeopardized; their health declining at a faster pace than normal.

When I sit and talk with them, they assure me that there is no other place where they want to be. They consider the long-term care facility their home now, too.

A husband in his 80’s once told me that when he takes a respite from the daily commitment to his wife, that he is lost; he finds himself adrift. And so he returns to the care facility, more at peace and comfortable here (living his commitment to his wife) than in the loneliness and quiet of his home.

Love.

This room is filled with love. I see the love in the many family photos that are pinned to the bulletin board, or framed in the cabinet. Cards are filled with heart-felt sentiment; words of family love.

I see my mother in the bed. And I see my father. Now I see my mother-in-law, my aunt and others.

When you look at your loved one, you see that he is also made of stars and carries eternity inside.   Thich Nhat Hanh

Interbeing.

Outside I can hear the birdsong. It’s Sunday so I also can hear the church bells in the distance. Down the hall someone is playing an organ and a few are attempting to sing a hymn and in spite of being off-key and discordant, there is a flow. The sounds are comforting. There is a rhythm in this building that I can sense – a heart beat – and I find it comforting.

Peace. Harmony. Laughter. Love.

May Grace surround my resident as she travels her last journey. May Grace surround us as we honour life and interbeing.

 

 

 

 

 

 

 

 

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).

 

 

 

 

 

 

 

That’s a good bingo!

That's a good bingo!

That’s a good bingo!

On Wednesday afternoons at the long-term care facility where my mother lived, you will find me in the community hall (or according to my mother – the big mall where people sing) volunteering at bingo.

I go with an open mind and an open heart.

Every week I learn something new from my peeps at the residence. (My sister calls them my “peeps” and I like that so I use the term often.) The gifts that they give me are many and I cherish them.

If you want to meet people who are truly authentic…then visit a long-term care facility. Even those who have Alzheimer’s or a dementia-related disease are real and authentic. When you least expect it, the true essence of each of us shines through; the residents are no different.

My peeps inspire me, and teach me to live in the Now. Often they are so thankful and grateful for the smallest of kind gestures that I just want to weep. Whenever I am with them, I find myself laughing and full of joy.

Today at bingo, my beloved friend (who sat at my mother’s dining table and kept an eye on my mother) joined me. She is full of spirit and enthusiasm – she meticulously cares for her attire, hair, and make-up and always looks so wonderful that I sometimes have to re-check what I have on…am I appropriately dressed to visit her? She visits the chapel daily, she confides, as she is deeply spiritual. She didn’t have to tell me that – I guessed it from her loving and positive energy that she emits every time that I visit her. (I want to be just like her when I grow up!) In spite of a difficult past that I uncover in bits and bobs (as my mother would say), and because she is so strong and determined at the age of 92, I so want to hear her story and record it. But she’s skeptical and isn’t ready yet. I accept that because I have learned that she has withstood many terrible events and grief, and I am deeply aware that perhaps I, too, am not ready to hear her story. I trust that when the time is right, we will recognize that moment and she will share her story.

Another one of my peeps at the bingo table has had a full and rich life in the public eye. I know that because I recognize the people in the photos in her room when I pick her up to go to bingo. She is remarkable, in spite of her dementia. She loves music – I would call her a music aficionado – and often rates the music in the community hall. Her face tells the story – she frowns and says oh, no, that isn’t music, or  she’ll sway to the music, tap her feet, and smile at me and say, yes! When I am with her, I am reminded that each of us (no matter how old) has a rich and colourful past. We must not underestimate anyone. (And I would like to capture her story, too.)

I love the residents’ honesty! They don’t hold back. They don’t mince words. Many people don’t like that but I suspect it’s because we are all so used to such mediocrity, such blandness, such hypocrisy in conversations…that when a real and honest conversation takes place, well, we are confused.  We see that as oh, auntie is having a bad day.  In reality, auntie is just telling it how she sees it. And it isn’t always pretty.

When they are so honest, I think they are more authentic than ever. I have learned to read their faces and the emotions that sit there…words not spoken, but humour, love, distaste, disgust…all blatantly evident.

When the residents play bingo (I overstate that), most are not actually active in the game. Instead, volunteers or staff members sit beside them and help. The volunteers/staff point to the called numbers or actually cover the numbers as the numbers are called aloud.  At my table, there are only two of us to help the residents – the other person is a staff member who is a student. She is leaving tomorrow as she has graduated from her course and so this will be the last time I see her.

She is a special person. I am in awe of her. First of all, she is young, happy, full of joy and she is not afraid to express those traits with the residents. She leans in and kisses them on their hands; she often hugs them; she laughs loudly all the time. When someone yells bingo! (no one actually yells bingo!…it’s more like a whisper because the residents are often too weak or too shy to yell) she will jump out of her seat and start jumping up and down, often dancing! Oh, I just want her to stay and play bingo with us the rest of her life! Please don’t go, I tell her, which just makes her laugh more.

She has a beautiful singing voice, too. I know this because once a month there is music therapy at the residence and I volunteer. Since I am not a very good singer, I was terrified to sing alone the first time that I volunteered. But here’s the thing about music therapy at a long-term care facility – it’s the music teacher (who is a talented volunteer) and the volunteer who do most of the singing. Usually when I round up the usual suspects for music, we have only two or three residents who will join in the singing as most of the other participants are unable to sing (for various reasons). I have learned that one does not have to actually sing…to enjoy the music. I have witnessed many a toe-tapper whose eyes are closed.

My mother sang beautifully and sang often in our home when we grew up so I am pretty sure (once again) that I am drawn to music therapy for deep, psychological reasons (Ha!) and to get over my fears.

So I sing.

And I love it. (I love the fact that I choose to sing even though I cannot.) Here’s the funny thing: the residents think I have a lovely voice! (Okay, peeps – we are going to get along just fine.)

But I digress. Our student worker (the one who is leaving at the end of this week) once started singing the hymn that we were trying to sing during music therapy. She was in an adjoining resident’s room and just chimed in.

Oh, even the residents in wheelchairs who barely move or show any emotion, woke up. It was like a miracle! I practically burst out crying, with joy. And so did the woman who leads us. We looked at each other with knowing eyes and we (all of us in that small room) were connected – by the joy of listening to the student’s beautiful voice.

Oh, yes, we will miss her. Wherever she is going, lucky them.

At my bingo table the two of us are attempting to keep track of twelve cards or so, with help from a couple of residents who actually do play bingo, but are hard of hearing. Four? No, fourteen. Forty? No, fourteen. You get the picture.

Well, eventually someone whispers bingo! and then the tables all respond…we help the bingo card winner yell it out….BINGO!

When it’s my turn to check the winning card and give back the called numbers, I am always a little nervous – many of my peeps cover more numbers when I am not looking. I think they feel like they are doing something worthwhile – if I cover one number, why not ten other numbers?

So keeping my eyes on all of their cards, pointing to numbers, and ensuring that no one is “cheating/helping” takes a lot of attention on my part.

I always remind myself to just go with the flow of the afternoon.

Once it has been established that the card is good – that is, all the numbers have been correctly called and identified, the caller yells, “That’s a good bingo,” and we all cheer. As if we have really won the lottery.

Inevitably, after we do a victory dance (whether or not we win), the two of us help the residents to the smaller activity room (the room as my mother used to call it “where the whirling dervish lives,” the high-energy activity director) where the whirling dervish, oops, I mean, the activity director has prepared coffee, tea and cookies for the participants.

When we sit at the round table enjoying our coffees, I often think of my younger life as a mother, sitting with other young mothers, talking about our daily lives and keeping one eye on our kids. I’ve come full circle. Life has an unexpected symmetry, I think. Here I am with residents, keeping one eye on them as they sip their hot drinks, and talking about our daily lives. For a few moments, I know that I am in the flow.

And I think to myself... that’s a good bingo!

 

 

 

 

We are meant to share our stories because they connect us!

Immigrated to Canada

Immigrated to Canada

When I showed up at the designated time to sit and record the resident’s life story at the long-term care facility where my mother lived before her recent death, the activity director informed me that my resident was ill and that our visit was cancelled. I was skeptical. This has happened before. So I asked the activity director if I could just pop in and say hello to the resident.

I knocked on the door even though her door was wide open, and I was told to come in.  My friend, the resident, was lying in bed.

She told me that she wasn’t feeling well and that our interview should be cancelled indefinitely. Yes, I suspected as much…anxiousness about the interview.

“Another day,” I assured her.  And because I suspected that her stress regarding our interview had caused her to feel ill, I asked her if she had second thoughts. “My story isn’t very interesting anyways,” she admitted. She sat up a little in bed.

I chuckled and reassured her that when the activity director told me a story about the resident’s trip to Canada, solo, as a young woman, that I found it not only interesting but courageous, and that I was anxious to hear more stories.

She sat up straighter in bed. “Now take a seat. Where’s your recorder? Are you going to take notes?” I burst out laughing and asked, “Is the interview back on?”

I prompted her with a couple of questions, and she elaborated about her family growing up in Europe, her trip to Canada, and her marriage. I was enthralled. Like many of us who grew up listening to stories about our parents who immigrated to North America, and sat in wonder as they told us about their  childhood and lives – so very different than our childhood lives, her stories reminded me of my own parents – their childhood in England, and their immigration to Canada and adapting to a new country. Her stories gave me pleasure; my reward – wonderful memories of my own parents’ stories now connect me to her stories.

During my visit, I noticed that my friend has sat up in bed, made herself comfortable and she has leaned in – she was vibrant and quite aware that she had a captive audience of one.

It was time to leave (an hour is optimum for a first visit) but I inquired first if I may return to hear and record more stories and she agreed wholeheartedly.

And now the confession: She admitted to me that she felt ill about our visit, and that she worried that she was not very interesting.

My intent from the beginning of this project, I assured her, is about the residents and their stories; it’s about fun; it’s about remembering the past with fondness and about seeing the connections – who we become and the moments that changed us. And most of all, it’s about recognizing that our lives matter – to our loved ones, our friends, visitors and volunteers, and to the staff.

I assured her that if the story-telling isn’t fun or if she doesn’t think it is worthwhile, then the project isn’t worth pursuing.

When I left her room, it occurred to me that in the beginning of this story-telling process, it’s vital to reassure the residents and perhaps to relate a couple of stories of another person’s life. That’s when the magic happens – all of us, young or old, like to hear stories. And when the stories are true – autobiographies in the making – we are all fascinated to capture a glimpse into the past and see inside one person’s life. At least, I know I am.

Because at the end of the day, we are all so unique, and not so unique. Once the stories flow, we can see how we are all connected – even though our stories are different. When she spoke of her family immigrating to Canada, the ship’s journey and final stop in the port of Halifax, I immediately thought of my parents’ arrival to Canada and wondered if they, like my friend, were scared, too.

We all think that our own individual lives are rather simple and mundane, and that in our own eyes, that we are not very special. But a funny thing happens when we share our stories with others: through the reflective lens of another, we begin to value the meaning and worthiness of our own stories. Through the lens, we see and understand the significance of our journey.

I believe that is the true gift that we receive when we share our stories.

I trust that my friend’s pleasure and joy in talking to me allowed her to see the significance of her life; I know that I received joy, inspiration and wisdom. And I cannot wait to visit her again.

But most of all, I am always so grateful that when we pay attention to people (and to their stories) we focus on their spirit – their true essence. And that is what connects us. Our spirits are all connected. We are all connected.

When we pay attention to another person, we share a part of us and in sharing we begin to care…our compassion, our kindness, and our love within grows. And that is the true gift!

 

 

 

 

Love transforms us

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Portugal countryside

Yesterday I read an article on a travel site that high-lighted life-changing trips and those words sparked the thought “What life-changing moments have I experienced?”

Certainly I experienced true bliss and joy when I once stood in a village made of slate stone erected on the side of a mountain in the beautiful country of Portugal.  While there, I leaned against a slate wall and all I could see for miles and miles were vineyards, green fields and dots of cork trees. There was a complete silence. Suddenly I could faintly hear in the distance the sound of bells – sheep bells.

Life-changing? Yes.

For sure I experienced utter joy when I gave birth to my beautiful twin boys so many (many) years ago one October day.

Life-changing? Yes.

Absolutely when I set eyes upon my husband (even more years ago).

Life-changing? Yes.

The telephone call that told me that my sister’s mammogram results weren’t good. And the moment that I fell into my husband’s arms, crying with relief, when the physician assured my sister that the operation was successful.

Life-changing? Yes.

And without a doubt, when I cared for my father who had Alzheimer’s, and then sat by his bedside for a week, all day and all night, when he slowly but surely died.

Life-changing? Yes.

And just last December, when our beloved mother died in our arms, surrounded by family and loving staff…life-changing? Yes.

So what do we mean when we say something is life-changing? Well, for me, it means in that moment, I was transformed. That something deep within me resonated and I felt it. I knew without a shadow of doubt that my soul (my spirit) was touched. We know because we can feel the reverberations – it’s like a gong that is resonating deep within…over and over. And it feels – well, like something really, really big is happening!

And always those moments can be resurrected easily: I just go into my memory bank and pull them out and easily I am transported to the moment as if it were yesterday. I just pull them out, breathe them in, and savour them. Yes, even those overwhelmingly emotional moments at my parents’ vigils.

I savour those moments because they comfort me. Those moments remind me of what makes our life so precious.

Those moments are filled with love. Love. And Grace.

When I stood on that mountainside in Monsarez, I felt joy that brought me to tears. I knew in those moments that the Universe was beautiful and that I mattered, even in my insignificance.

When I glimpsed my babies for the first time, I smiled at my husband (through the tears) and knew for sure that we were forever changed – we were now connected to two beautiful beings that we were to love forever.

Love.

Love transforms us. It completely changes us and our lives. It changes our thoughts, our perceptions, and our energy (our power).

So, yes! We do all have life-changing moments. Sometimes those transformative moments are the biggies – birth, death, illness, marriage, loss. But often those moments are very simple instances when we are hit by an insight or a eureka.

I once walked into a vacation rental that was plain, sparsely decorated and had a terribly uncomfortable bed and I turned to my husband and announced that “wherever I am, I am home.” He still teases me about that one. But what he didn’t realize is that when I walked into the rental apartment, that I had this sudden flash that I was happy and content – no matter where I landed. It was a huge life-changing moment for me! I cling to that thought whenever I am feeling uneasy or uncomfortable…I just remind myself that I am enough!

I suspect that when we choose our professions or careers that some of us have had those life-changing moments. When I opened my first children’s clothing store, I felt something deep within. I remember my husband and I sat on the floor of the store one New Year’s Eve, toasting the New Year, and thinking that I was meant to be there. But I also remember the moment when I knew, just knew, that I was not to be there any longer and that it was time to close the store. Strangely enough, only two months after closing my store, my father’s health and my mother’s inability to cope led me to caring for them full-time.

Life-changing moments or events or challenges (because often it is the challenge that defines who we are and who we are meant to be) are significant if we choose to see their significance and meaning.

Whether those moments are momentous or simple, it is those moments that are gold! They are precious. That’s why we savour them. They’re alchemy.

(Note:  The travel site I visited was AFAR.)