Category Archives: alzheimer’s disease, dementia-related diseases, caring for parents

Joy. I choose joy.

“It is morning and again I am the lucky person who is in it.”  Mary Oliver

As I stared at the screen of my cell phone, I couldn’t contain my laughter as I sat in the doctor’s reception room. Laughter spilled out as I watched the twenty-second video of my new, three-month old granddaughter that my daughter-in-law had sent to me.

When joy bubbles up, you can’t squelch it. You can’t put a lid on it; you can’t hold it back. Joy has a life of its own. Much like laughter. Both are meant to be shared.

Joy. It’s transformative.

I’m convinced if you want happiness or peace, you must recognize these tiny moments of joy and just let them out! Joy does its best work when it’s let loose, or when we let it rip.

As I looked around the sparse waiting room (I am sitting on a hard, wooden bench, for God’s sake) I realized a number of people are smiling back at me which meant that my laughter had affected them, too. They are smiling and leaning in towards me.

I had to share my joy, so I confessed that I was watching a video of my new granddaughter attempting to roll over. Now their smiles widened, and faces nodded, knowingly.

Babies. They make us smile and laugh. Babies. They cause joy to overflow.

But as much as I am in awe and wonder of this new little life among us, I find joy and meaning in many moments throughout each day. I have cultivated this habit for many years.

I find joy in my garden (even during the bleak, winter months), in my daily walks along the river, in sunrises and sunsets, in the ever-changing skies, and even in the patches of sunlight that fall between the cracks of my shutters, painting a pool of umbra gold on my living room floor.

I find joy when I walk into the long-term care home where my mother used to live, and where I now volunteer. Joy wells up every time I lean over to speak to a resident, and that resident grabs my hand and holds it tightly to their chest. Or when I watch a person who rarely speaks, softly mouth some of the words to “Amazing Grace” and “I Come to the Garden Alone,” during music therapy. And joy sits beside me (and all around) when I read aloud to some of the residents on Friday afternoons at two. As a reading group, we’ve shared many funny stories that bind us in that small, drafty room at the end of the hall. My mom used to call this room “the house at the end of the street” – the east-end computer room to the rest of us.

I feel joy each time I sit with dear friends over coffee, or when I sit in my meditation circle. As friends we share our highs and lows, our achievements (“I have a first grandchild”) and our disappointments; our fears and our hopes connect us, strengthen us.  Joy sits at every family meal, she is in my painting supplies, and she is sitting here right beside me as I finally sit my ass and write!

I choose joy every day. Over and over again. I choose joy.

And I especially choose to seek joy when I am in sorrow. Joy and sorrow walk side by side. Laughter is a breath or two away from tears. Both arise within us and cannot be quieted.

Joy and laughter nourish my resilience that grows stronger as I age. Like an old tree, we become stronger in the face of bad weather and adversity. Each moment of joy is like another ring around my trunk, and it is those very moments (like the rings of a tree) that sustain me, that map my growth. Like the concentric rings of a tree trunk, my cells are growing, flourishing, and nourishing my body and spirit.  When we recognize that it is those moments of joy and laughter that help us recover, our resilience matures.

When I cared for my parents who both had dementia, I found that the challenge of care-giving became a gift to me because it was during those difficult times I recognized that joy still visited me during my sorrow. I learned that even in the midst of disease, dying and yes, even death, joy springs up.

Joy was in the nurse’s words when she whispered softly in my mother’s ears; joy made me laugh out loud at my father’s bedside when I could suddenly hear a cacophony of birds’ sounds during the early dawn hours; and joy made me smile when a cardinal tapped on the window of my mother’s room when she lay dying.

Joy, laughter, and Grace. If we are open and receptive to them, they will visit often.

They reside within the baby’s innocence, in a stranger’s smile, in kind words, in acts of compassion, in creativity, and in love.

Every day I choose joy. When we choose joy, I believe we choose life.

 

 

 

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The 7 A’s of Dementia – Apraxia

Whatever you accept completely will take you to peace, including the acceptance that you cannot accept, that you are in resistance… E. Tolle (Stillness Speaks)

Apraxia is the loss of ability to initiate purposeful movement. Individuals with apraxia may also have trouble understanding terms such as back, front, up, down. As a result of these losses, it becomes difficult to do things such as tying shoelaces, doing up buttons and zippers, and any activity involving co-ordination. When we lose our abilities to remember the sequences and patterns of movement, it results in the eventual inability to co-ordinate hand and leg movement necessary for specific activities, such as driving.   Apraxia definition from http://www.alzheimer.ca/en/on/About-dementia/Dementias/what-is-dementia/Seven-A-s-of-dementia

There is a sequence when we complete a task or chore – a natural order. Unfortunately, persons with a dementia lose the ability to remember and to understand the sequence and order of things – they become unable to discern the steps or sequence of a task.

They also are unable to attend to the task because they lack focus. This lack of focus (and lack of understanding the steps or sequence when doing a task) will upset or anger the person with a dementia.  Frustration follows. Often the person will refuse to do the task or interrupt or walk away from the chore while in the middle of it, simply because of their frustration. Frustration sets in because they cannot understand why they cannot do the task or remember how to do it. Often the person with a dementia just wants to “save face,” so they walk away or they begin to exhibit aggression, combativeness, anger, etc. We wrongly assume (especially in the middle and later stages of dementia) that a person with Alzheimer’s doesn’t feel embarrassment when they make mistakes – wrong! They are embarrassed and often will feel shame. They are aware that something is wrong, but they do not recognize what is wrong or how to fix it. Often this is the underlying reason that they become aggressive or angry.

My mother would often rail at us when we tried to help her dress or brush her teeth. She would insist, loudly and persistently, “I can do it myself!” Many times when we took her to the bathroom, she argued that she didn’t need our help, when so many times, she clearly did!

In time we learned to step away  and just allow her space. Often she forgot in the middle of attempting to find her day clothes in the dresser, why she was rummaging through the drawers. She would move away from the dresser (and leave the drawer wide open) and begin to do something else. Other times I would put her jacket on the bed and she would just stare at me. She clearly was unsure of what to do with the jacket.

Or, we would take her into the bathroom and step aside –  she would turn the faucets on, let the water run, and run, and run. Without either brushing her teeth or washing her face, water still gushing, she would turn her wheelchair away from the sink and announce, “I’m ready.” Brain cell damage prevented her from following through these simple tasks. She would be completely unfocused.

Behaviour management strategies should include space and dignity, but unfortunately most staffs are too busy and short-handed to allow this. Instead, they hurry through their daily tasks and residents become anxious.  When we allow the resident with a dementia, time and space (without the sense of urgency), we allow the person to maintain his dignity. When the person with dementia becomes distracted or forgets the task, we simply step in and continue to complete it for them, without any judgment on our part.

When my sister and I cared for our parents, we learned many tricks to ease the day-to-day care. My parents shunned our help and support, especially with the daily tasks such as dressing and bathing. Instead of arguing each day over simple tasks, such as dressing, we tried to simplify things. We learned to arrange clothing items  in the order of getting dressed: underwear (first), top or sweater, pants,  socks; lastly, shoes or slippers placed next to the bed. Otherwise, you will notice that the person with a dementia will attempt to put on socks over the shoes, or simply not wear socks. Or, you might notice that they will put on slippers to go outside. Or, the shoes are on the wrong feet. Or, not wear a coat or warm clothing for cold weather.  We need to understand that someone who has apraxia may recognize the item, but really have no idea what to do with the item. I once gave my mother a Kleenex when she was sneezing, and she took it, stared at it blankly and then threw it up into the air and watched as it fell to the floor. She then continued to stare at it as if she had never seen a Kleenex before. (I remember watching her face with total fascination.)

So how can we help when we recognize our loved one is unsure of completing a task? Calmly (without any judgmental commentary, please) step in and begin to give how-to instructions – one step at a time. Slowly introduce the next step in sequence, but only once the previous step is completed. Keep in mind that persons with dementia can focus better in a calm, quiet space; therefore, distractions, noise, or too much chatter (your running commentary) are not helpful.

“Mom, here is your sweater…put one arm into this sleeve first.”

My mother liked to talk and would often become distracted as soon as a second person came into her room. It didn’t matter if she was drinking her beloved tea, eating a cookie, combing her hair or putting on a warmer sweater. The moment she noticed another person in her room, she reacted. She became curious and completely forgot what she was doing, or she became angry and confused,”Why is that person in my room?”

Before my father died, and while I cared for them both full-time, I once was in a grocery store with my mother, helping her shop. (This was before we realized that she had any dementia.) She did not have a shopping list. (That was a clue, my friends. It takes planning and thought to prepare a grocery list.) When we walked into the store, I explained that we would probably need fruit, vegetables, bread, rolls, and cereal.

Since the fresh produce was in the first aisle that we approached, we began to shop. I asked her what fruit did she want to buy. She didn’t answer. Instead, she perused the fruit bins, picking up item after item. After I realized that we had spent nearly five minutes in the store, and had yet to choose an item, I suggested bananas and peaches. She agreed. We went to the vegetable bins and she just stood there. I suggested a cabbage, some carrots, onions and lettuce. She agreed. This hesitancy continued in each aisle. Finally she announced she would like cereal and that she didn’t need my help, so I left her in the cereal aisle and continued shopping. After ten minutes I realized that she had not met me at the front of the store. I went looking for her and she was still in the cereal aisle – and had yet to make her choice.

Now that I know what I know (when you know better, you do better – Maya Angelou) I know that she wasn’t just fatigued or stressed (and that is why she took so long to make her decisions), but that my mother was showing one of the many early signs of dementia – lack of focus and inability to follow the steps or sequence of a task. She no longer made grocery lists because she couldn’t focus on how to complete them. She couldn’t make a decision, because that was a skill that she had lost.

Not all persons with Alzheimer’s exhibit all the seven A’s of dementia. In fact, without a brain scan, it is difficult to determine which areas of the brain are damaged.  Different areas of the brain cause different symptoms of the disease.

For me, I did not care if my mother exhibited any of the  A’s of dementia, as it only mattered how I reacted to her behaviours.  If I gave my mother her lipstick and she smeared lipstick across her cheek instead of her lips (which she did on multiple occasions), or if I handed her a hairbrush and she used it upside-down, well, I tried not to over-react and correct her actions. (I wanted to! God knows, the first time that she smeared lipstick (bright red!) across her face, I nearly gasped out loud.) Instead, I learned to calmly take the brush out of her hands, re-position it in her hands, and say, “Let’s try combing your hair this way.”

I tell you this story so that caregivers can understand that persons with dementia will exhibit different symptoms, but that these symptoms should not scare us.   Because in understanding their behaviours and the reasons behind their actions, we allow the seeds of compassion to take root. Compassion changes everything.

At the end of the day, when caring for someone who has Alzheimer’s or any dementia-related disease, we all need to let go of our need to control, and we need to let go of our expectations.

We all need to show more kindness and compassion and allow our loved ones to just be – allow them dignity and space.

I believe that compassion, dignity and space will transform our own personal energy because our energy will be based on acceptance. Persons with Alzheimer’s or a dementia-related disease will feel our loving energy, in spite of the disease, and they will understand that they matter to us, disease or not.

The disease may diminish their quality of life, but our actions and our reactions to this disease will determine how we (together) spend our remaining days.

Let our journey with our loved one be one of peace and acceptance, not struggle and judgement.

 

Apraxia definition is taken from http://www.alzheimer.ca/en/on/About-dementia/Dementias/what-is-dementia/Seven-A-s-of-dementia

 

Colours of my meditation

When I walk along the river, I make up names of the colours of the sky and of the river. I often recite the colours aloud to my husband: River city steel-grey blue; Freshly laid cement grey; Cottage on the Lake vintage shutter white; Sparking turquoise gemstone blue; Old driveway past its day, pot-holed grey. Today, my love, is a River city steel-grey blue kind of day, I would announce.

My husband is never very impressed; to date he has not contacted Sherwin-Williams.

What I didn’t confess to him was that I have assigned new colours to things since I was a kid. I can’t help myself.

So you can imagine how I feel (like I have come home) ever since I took up watercolour painting. My morning and evening rituals of watching the dawn skies (and later the sun sets) have me running for the paint palette – all new colours to me. (I swear: If heaven mirrors our thoughts – I am looking forward to skies of alizarin crimsons, cadmium yellows, and ultramarine blues when I die. And note to God: Please throw in a little yellow ochre and raw sienna, for no other reason than…I love those colours!)

Even my meditation and mindfulness practices have deepened – in living technicolour palettes. My mind wanders during meditation: I hear a bird trill and instead of labelling it – sparrow, junco, robin, cardinal – I assign it a colour. The lowly house sparrow is labelled in shades of raw sienna (oh, come on, my favourite colour), a mix of alizarin crimson and ultramarine blue, with just a touch of yellow. Umber, that is. Not too much, or my brown mixture will be the colour of mud.

Once I recognize that I am painting  the bird sounds that are interrupting my meditation, I re-focus on my breath.

Breathe in. Breathe out. Expansion. Release.

It’s so obvious that I am thinking about paint colours and mixtures again. (Blame the birds. They are a chirpin’.)

Breathe in. Breathe out. Expansion. Release.

Because watercolours give me such pleasure (even pronouncing the colours in my head delights me), I find that instead of chastising myself for the numerous round trips that my mind has taken during my meditations, I find myself smiling. Colours just make me happy. And so does meditation. Meditation allows me to access my inner spirit – and my inner spirit is turning cartwheels (I’m fairly certain of this).

I will chalk up my mind’s wanderings to beginner’s mind – one of curiosity and attention. Thankfully, I think my beginner’s mind (thanks to learning a new art) is the opposite of my usual state. That is, I’ve become acutely aware that my mind’s tendency is to label things: Those bare branches look like tangles and plaques of a mind affected by Alzheimer’s disease; that tree mirrors Quan Yin (the statue of compassion); that person resembles Hercule Poirot (the famous Belgium detective of Agatha Christie books); the dog who lives next door is barking madly again – he must have seen a falling leaf. (Ah, judgment of the dog. He barks at everything.)

Oh, the state of beginner’s mind – an open, curiosity to life’s present moments – hasn’t cured me of the habitual 24/7 narration of attaching colours to everything, nor has it cured me of labelling my perceptions. Rather, beginner’s mind has allowed me acceptance of my thoughts, my narrations, my desire to see life in a technicolour, dream coat palette.

And acceptance, I have learned, is key. It is key to a healthy self-awareness, and a healthy self-awareness helps us navigate this journey.

Beginner’s mind (like a child’s mind) reminds me to pay attention to this moment – attention to the breath during meditation (as a touchstone) and attention to our sensations, feelings, and emotions. We miss the point of meditation or mindfulness if we do not realize its’ greatest gifts: attention, awareness, and acceptance (the three A’s).

And by acceptance, I mean that we embrace our mind’s wanderings, judgments, labelling, and stories. During meditation, we note our mind’s wanderings, and then gently bring our attention back to the breath.

Instead of chastising ourselves and becoming frustrated with the meditation session, attaching blame to the session or becoming frustrated with ourselves, we smile (Thich Nhat Hanh) and return to the breath.

Breathe in. Breathe out.

Umbra yellow. Ultramarine blue. If I mix the two colours, will I create a vibrant green? Or turquoise?

Colours again.

Breathe in. Breathe out.

I smile.

 

Meditation and a viewfinder

viewfinderI cut out a rectangular shaped box in the middle of the piece of cardboard and look through my “viewfinder.” The angles of the table are now easier to sketch. When I look through the small box, I can perceive the smaller picture and the relationships of the table within the small opening. I’m less distracted from the images that the cardboard blots out. Now I can close one eye, and like a monocular, focus on a small part of the bigger whole.

I think meditation works like a viewfinder. They are both tools to enhance our lives. One allows me to draw more accurately, to hone my attention skills while sketching. The other allows me to concentrate and pay attention to the present moment. Both tools render clarity and focus. Both make things simple and transparent. Both eliminate clutter.

Since Christmas I have been lost in a number of nesting projects – clearing out old unfinished stuff that has cluttered up the corners of our bedroom, and projects that have tumbled about in my head. Nesting and resting. It’s one of the reasons that I enjoy the winter months so much, as I get a huge delight in disposing of the yellow sticky-notes (my to-do list) that line my computer screen: Shutterfly album for son, done. Old photos scanned and uploaded, done. Library wall of books dusted, done. New blind for the kitchen window, done. New sketching pen purchased, done. Watercolours purchased, done. How-to watercolour YouTube videos  watched incessantly,  done. Dining room table now a temporary art studio, done.

Writing, not done. EBook about meditation, mindfulness, dementia and me, not done.

Makeshift artist's studio

Makeshift artist’s studio

The irony doesn’t escape me: lost in projects, losing focus. (My viewfinder’s not working.)

Over the holidays I spent a few days writing about dementia and mindfulness, and because I had no plan (no organized thoughts about an eBook), I sat down and began in the middle. But disorganization unsettles me; I feel uneasy when I see disorder. It’s a trait that I have possessed since I was a child and I own it. Order, neatness and cleanliness are a good thing in my book.

Eventually my struggles with writing led me to abandon the eBook. The middle was too weird for me – I kept asking the Universe for a beginning. My intention had become: A plan! A plan (the middle isn’t working for me)!

As humans, we sure complicate things. Instead of perceiving life as it is, accepting the Now, our minds search for something greater. In my case, I went searching for answers – for a plan, one that had a beginning, middle and an end.

So for the past couple of weeks, in spite of meditating and sitting in silence, and instead of accepting the sacred in the present moment, I kept searching.

When we do it right, there is a simplicity in mindfulness: when we see the grace in each moment – in peace or unease – then we are practicing mindfulness, complete acceptance of what is. The simplicity is in the awareness.

But I ignored those moments, I chose to struggle and complicate them:

I would meet people and we would begin a discussion on Alzheimer’s, dementia, and mindfulness, and instead of acknowledging the signs and the synchronicity – the repetition and constancy –  I dismissed them. I would take long, solitary walks and soon my head would fill with memories of my father standing on the counter (how I had to find a ladder to help him down); how my father jumped out of a moving car one morning and I still ignored the signs of his illness; how my father refused to go outside (when it was he who taught us to appreciate a sunrise, while camping); and memories of my mother sobbing over the washroom sink because she couldn’t turn the taps off. All of these memories and more would continue to assault me when I found myself in stillness. Thoughts and narratives inundated me – all about dementia, mindfulness and me.

And yet, I still didn’t see the connections. Instead, I found myself wishing that the thoughts of dementia and memories would move over so that a plan of a new eBook could enter! The plan, the plan…I need a plan!

We complicate things.

The moment’s simplicity eluded me, and I continued on the quest for answers:

Why do these narratives of mindfulness and dementia keep intruding into my thoughts and meditations? Why can’t I organize my thoughts into a plan with a beginning? Why would I want to write another eBook about dementia? Why is meditation not working for me? Why am I so filled with thoughts when my meditation should be about letting go? Why can’t I let go?

Begin at the beginning. Hold the viewfinder up and see.

Immanuel Kant once said,  “We see things not as they are, but as we are.”

When we struggle, life is a struggle. When we embrace life’s flow, life flows.

My meditations had been quite clear all along, transparent even.  The whispers were getting louder and more insistent, but always constant. It’s not monkey mind and clutter. Well, it is. But there’s a message within those thoughts – the thoughts are the message:  Write the thoughts down. That’s the plan.

I let go and finally sat still. And I listened to the silence behind the silence and that’s when I sensed that everything  – my writing, my lack of writing, my projects, my painting, my thoughts about dementia, mindfulness, meditation and me –  was interconnected, including my resistance. And that in spite of my intention to be in the flow – I had been swimming upstream.

My resistance had created diversions and distractions to prevent me from writing.  My resistance had shown up as nesting. Nesting was comfortable and safe. My projects were my attempts to clear out the clutter; or more accurately, to stop the narratives. Because I am afraid of the narratives. I am resistant to writing another eBook about dementia.  The truth is I have already written an eBook about that subject and I do not want to do it again. My resistance is actually fear: My fear of having nothing new or fresh to say; my fear that because there is no order in the book, that the book is not worth writing.

But here’s where the magic lies in recognizing the interconnections: Instead of writing, I have been painting, and as a beginner – learning a new craft – I am learning to let go of the need for perfection.  As a beginner, I have a beginner’s mind. I have become open, curious, and willing to experiment and make mistakes. In a state of beginner’s mind,  I am learning to let go…of a plan. I am content with imperfection.

“Meditation doesn’t solve anything, but it helps everything.”   Ethan Nichtern, Buddhist teacher

I’m humbled when these thoughts arise because they remind me that I had the answers and the wisdom within all along.

The viewfinder has changed my perspective. I need to be aware and recognize when I am nesting, and not lost in avoidance or distractions.

Lastly, in allowing myself more creativity in my life, I allowed myself to return to beginner’s mind – a state that I want to transfer to my writing, and other parts of my life.

Through this process I’ve learned to trust myself. The answers are all within. Everything I need flows to me: Nesting, creativity, wisdom, insights. And, yes, resistance. Our greatest lessons come in the disguise of resistance.

Challenges are here to awaken you and even if you’re awakening, life continually gives you challenges and then the awakening accelerates and deepens.             E. Tolle

It’s time to get back to writing an Ebook, in spite of my fears. My fears are no longer hidden under distractions and diversions; my fears are transparent. I will trust that I am to begin…in the middle, and not at the beginning which would feel more comfortable. I will need to trust the process. And I will need to trust myself.

I want to fall into  beginner’s mind when I write.

But first, I need to go for a walk and see the sky. And I don’t need a viewfinder for that.

 

 

 

 

Re-gifting Valentine’s gifts

It’s the day after Valentine’s Day and I am visiting my friend at the long-term care home where I volunteer, and when I ask her how was the Valentine’s party, she smiles.

I won two prizes, she tells me, and I gave both of them away.

Now it’s my turn to smile. Tell me your story, I urge her.

She proceeds to tell me about her day, how she was late for the party because she needed to take a nap for a couple of hours, and almost missed out on the festivities. She’s smart, and she wisely informs me that she didn’t really win the prizes…the activity director was winding down and gave her two prizes, instead of one.

When she won the two prizes, the woman who was standing beside my friend’s wheelchair let out a long breath when she sighted one of the prizes – a big, fat pristine writing pad. I know why she coveted the writing pad, my friend informs me, after all, she is a beautiful artist. Paper and artists are meant to be one, she intuitively knows.

So I gave the writing pad to her, my resident confesses.

I smile. Ah, you re-gifted the gift of joy, I explain to my friend. She shrugs, but I can see she is thinking about that statement and it is giving her pause.

What about the second gift? I further inquire.

Oh, that. I won some Valentine candy that filled a flower vase; you know, the hearts looked like flowers.

I begin to chuckle as I had just visited another resident down the hall (my friend’s neighbour) and this woman had excitedly shown me her Valentine’s gift from her neighbour down the hall. I remember clearly that the vase filled with chocolate hearts that looked like flowers occupied center stage in her room.

My friend who I am now visiting grins when I relate how excited her neighbour was to receive the chocolates/flowers gift, and she now re-assures me that re-gifting ‘joy’ is a gift – that I gave myself! (It gives me such pleasure to watch my friend’s face when she reflects on re-gifting.)

When I drive home from the long-term care home, I reflect on my gift – it is these moments of hope and joy that fulfill me, as a volunteer. I bank these gifts of hope and joy – I deposit them daily in mindfulness. I’m grateful that the depository is full and overflowing because I make withdrawals whenever I find myself watching the news on television, or when I find I am caught up in a conversation about the world going to hell in a hand basket. (Who coined that frightful image?)

Now more than ever we need hope to sustain us. Hope allows us to balance the despair. Thich Nhat Hanh reminds us that we need equanimity in our daily lives: equanimity is one of the Four Virtues that embody Buddhist practice, along with compassion, loving kindness, and sympathetic joy or empathy. Equanimity when translated into English means The Middle Way – the core of Buddhism.

The Middle Way allows us to live in balance, or as one of my son’s likes to quote…not right, not wrong; just is.

I’m reminded of the story of the Zen master who throughout many trials and tribulations greets each challenge with “Is that so?”

I had told that story of the Zen Master’s equanimity to my husband one time, and we spent the next few weeks proclaiming “Is that so?” to every mishap, argument, and challenge that met us. Alas, in time we forgot about the story and “Is that so?” has now morphed into long, complex, analytical sentences…none of which reflect equanimity at all.

I’m glad my friend told me her re-gifting stories. When she re-gifted her prizes, she re-gifted joy – one woman’s eyes lit up with visions of creativity; the other woman’s Valentine’s Day became special…because her neighbour down the hall had remembered her.

And I received a gift, too. Hope. Because it is in these moments throughout my day, when I interact with others, when I notice the sky change colours, when I can hear the birds chirping in the silence behind the silence, that I find grace.

Joy. Hope. Grace. All gifts.

 

 

 

 

 

 

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.

 

 

 

 

 

I’m aglow with hope

Christmas lights

Candles and tea lights, and strings of twinkling white bulbs are aglow in every nook and cranny of our dining room and living room – I want the rooms to sparkle and glow throughout the season. I look forward to that magical hour when the sun sets and darkness falls: it is the bewitching time to turn all the Christmas lights on, and light the candles. (Okay, I’ve switched to battery-run candles and tea lights this year – I nearly set the house on fire last year, but that’s another story.)

There is nothing that fills my heart more than flickering light during the twilight hours of the day. Nothing.

I walk into my living room and dining room and I am transformed into a little girl staring at the Christmas tree lights with wonder and awe; I am a young mother looking at the Christmas tree that my two little boys have decorated with handmade ornaments that won’t break and popcorn garlands that took many evening hours to create; I am an adult child who is staring at the Christmas tree wondering if this will be the last holiday that my mother will be able to come home.  I am a grieving daughter who finds solace and strength in the steadfast holiday traditions – the Christmas tree lights soothe my sorrow and remind me of beauty, joy, wonder and love.

Flickering lights, glowing lights, twinkling lights…represent hope.

My intention is that all of you find hope and love in the glow of the season.