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.

 

 

 

 

 

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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.

 

 

In remembering my mother, I honour her

Climbing, rambling, shrub roses in shades of old-fashioned pinks; ornamental rose hips; fleshy thorns that prick; Zinnias in a riot of oranges, yellows, pinks and reds; A disarray of messy hollyhocks, sweet Williams, peonies and daisies;

Endless cups of tea – lots of milk (not cream) and two spoons of sugar (oh, what the heck, throw in another teaspoon of sugar) – sickly sweet, all the better: “it’s healing, don’t you know”;

Daily sister chats until her sister died;

The aroma of Sunday roast beef dinner and Yorkshire pudding; Hamburgers on Saturday evening, fried in a pan (not grilled), sprinkled in paprika – loved by grandchildren so much that the recipe was discussed at her funeral;

Bed linens so immaculate and taut to satisfy any drill sergeant’s precision;

Hockey arenas at dawn, early hours to scream at the referees. Grand kids skating, ignoring their grandmother’s hollers and shrieks;

Dancing, always dancing. Even a wheelchair couldn’t hold her still;

Hugs that belied her tiny body – hugs that transformed you.

My mother’s legacy. The ephemera of a life once-lived: Moments not meant to last, but do.

These are the images, the scents, the memories that assault me each of the days since she died two years ago this week.

It’s what remains. Not things, not possessions. Just fleeting remains.

When I am in my own garden, I remember the many hours we spent in her garden: a simple garden, no plan, no design. A riot of colour.

Every time my stove top kettle boils and sings, I think of her – she is running (because I swear she lacked the slow speed dial) into the kitchen insisting that we don’t talk or finish the story until she returns. She never wanted to miss out on a word.

She was a cook in the army during World War II and her kitchen skills (and bed-making skills) were a testimony to the time she served.  My grill-loving husband used to shake his head and wonder how hamburgers, fried in a pan on the stove (no less), could be mouth-watering tasty. Her family dinners were legendary, now continued in my home.

But it’s those times when I am hugged, really hugged – you know what I mean? when someone hugs you so long and so deep, you swear that you are loved, fully loved – that I feel her presence so strongly. Because it is her deep love for her family that remains. That endures still.

Her love was a fierce and protective love. And it transcended family. Kindness and compassion transcend family: the underdog, the less fortunate, the lonely, the isolated, the shut-in and the shut-out.

Compassion and kindness remain. It remains in my sister, our children, and in me.

That, too, is her legacy. Her remains.

The Tao’s principles include cyclical growth and principles of harmony and balance: birth and death; all or none. The balance in life does not exist – unless there is birth, there is no death.

Joy and laughter; sadness and sorrow. I am learning that the two states are not exclusive of each other. They are interconnected …my last year’s post https://thegiftsthatweshare.wordpress.com/2015/12/19/migratory-geese-and-lessons/

I see my mother in everything. My mind says she is gone. She no longer exists. But my heart and spirit (and my body) still see her, smell her, and hear her. Last winter, in a dream, I felt her. She was in the form of a young woman, and I sensed the comfort before she came to me and embraced me in one of her Gwen bear hugs that surrounded you in love. When I awoke, I laughed out loud. Classic Dream 101, I thought. (But here’s the weird thing: my sister dreamt of our mother that very same night and she, too, was enveloped in a Gwen hug.)

On my way home today I watched a flock of swallows form a mumuration-like dance– the swallows swirled above me in endless circles – undulating in the late afternoon sky. I parked the car; mesmerized, I thought of mysteries, sweet mysteries.

I still do not understand the meaning of life or death. I only understand this: my mother’s life mattered: in small ways, in small moments. And that her remains endure.

I no longer grieve her absence as I once did. I rarely cry when I think of her. But I often smile, and laugh out loud. Her presence gives me great joy.

In the hours of the day, I feel her presence and I instinctively know that her life mattered, and when we are gone, our lives will endure, too – in small ways, in small moments.

I see the continuity of life in all. I am beginning to understand…Oneness. (Not with my mind, but with my heart.)

And in these moments throughout my day I pause – to fully accept the Now. I honour those moments.

One cannot be both unhappy and fully present in the Now. Eckhart Tolle

I have learned that to honour my mother I must continue her legacy, simple as it is: Love my family. Serve others. Be kind. Express my love (deep and lasting hugs). And dance with joy and gratitude. Honour her by acknowledging that I’m still here.

The peace and love in my heart will ripple through my circle of influence. Thich Nhat Hanh reminds us of this in Peace is Every Step:

Working for peace in the future is to work for peace in the present moment.

Dementia, dying and death are great teachers. As I remember and honour my mother’s death, I am grateful for that. All gifts.

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Naked, November trees are great teachers

The maples and sycamores, and the birches and oaks are almost naked; a cluster of withered, yellow leaves still cling to the hardier specimens.

It’s the season of transition. Impermanence.

Most think November is dreary, dull and dead. I do not. I think the month is one of great beauty.

Bare trees reveal their secrets. The birds have lost their hiding spots; the squirrels run hither and thither, scrambling along the branches and limbs like they are possessed. Their frantic motions are a harbinger of winter – of change.

In spring and summer foliage and flowers can distract us from the woody trunk – the true foundation of the tree. I believe that is where all the magic lies. The trunk is the soul of the tree. Everything else is just lipstick.

Trees have always fascinated me, and I am always under their spell. And even though I appreciate their greenery, it is the trunk and the shape of a tree that I find truly beautiful. The gnarled and twisted intricacies of an old oak or willow, the contorted beech trees, the aged maple that has not one, but multiple trunks that formed perfect perching spots for us when we were small.

And don’t get me started about the tree roots which form another world beneath. I have photographed roots that rise from the earth that look like alien planets. In fact, when I develop those photos, I am confused whether I am looking at the top or the bottom of the tree: I turn the photo this way and that, looking for signs of up or down. I frame them anyways, lean them against the living room wall, and when I go by, I reach out and rotate the pictures – upside down or upright, still an intriguing wonder to me.

When we walk along the river, I want to stop and gaze on each of the deciduous trees – often their limbs contort around another, like the yoga pose, the Twist. I am compelled to brush my hand over the trunks – some smooth, some so rough; some peeling, some filled with hideous burls. Hideous burls are worth sketching, are they not?

Bare tree trunks resemble torsos, their limbs reach out, cupped in prayer. And sometimes the torso has multiple arms like Guan Yin, the Chinese Bodhisattva, Goddess of Compassion, Mercy, and Kindness, that I saw in most temples in last year’s visit to China. We could do with more trees like Guan Yin. Better yet, we could do with more reminders of compassion, mercy, and kindness.

Guan Yin?

When you spend as many hours as I do watching the birds, bare trees are a gift. Just this morning I watched a family of black-headed chickadees flit from limb to limb, then fly to my wall of green (the ivy-covered fence) and then perch on the roof of our shed. Eventually they flew off to another barren yonder. In the summer, I can recognize their sounds “Chick-a-dee-dee-dee, chick-a-dee-dee-dee,” but often only glimpse a snatch of white and black. Today I drank a full cup of coffee while I spied on their movements. (You can hop, but you cannot hide.)

Last week, a Downy woodpecker (Downy-s are dinky; Hairy-s are huge.) was attempting to eat supper in his hidey-hole. I can see you, I call out. He ignores me. Supper is tasty. Last month his familiar rat-a-tat could be heard throughout the neighbourhood, but I spent too many minutes searching the leafy branches for his black and white presence. Eventually I gave up. His song was enough.

In my own backyard I tend to two small trees that are dead. Well, I have been informed by a number of people (some are gardeners, some are not) that the trees are dead. By their definition, I should remove them. They see rot and decay; I see life. Dead trees are apartment dwellings for sparrows, finches and chickadees. Dead trees are ornamental and sculptural when covered in snow or hoar frost. Dead trees are the perfect launching pads for squirrels and birds. And fights between the two species. Sketches of dead trees fill my sketch book. Dead trees house ready-made hooks for bird feeders and wind chimes. Oh, did I mention that during the Christmas season we decorate our dead trees?

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Remove them? What kind of gardener do you think I am? I haven’t met a dead tree that I didn’t fall in love with, yet.

Bare trees form dark silhouettes against the grey autumn and winter skies that resemble looming shapes of plaques and tangles – like a brain with Alzheimer’s disease. That image is forever imprinted in my brain.

Alzheimer’s disease and other dementia s are tragic reminders of impermanence. Of transition.

We are not what we seem; we are more than we seem. That lesson I learned while caring for parents with Alzheimer’s.

In Neale Donald Walsch’s, Communion with God, Walsch writes about impermanence and change:

Which snowflake is the most magnificent? Is it possible that they are all magnificent – and that, celebrating their magnificence together, they create an awesome display? Then they melt into each other, and into the Oneness. Yet they never go away. They never disappear. They never cease to be. Simply, they change form.

And not just once, but several times: from solid to liquid, from liquid to vapour, from the seen to the unseen, to rise again, and then again to return in new displays of breathtaking beauty and wonder. This is Life, nourishing Life.

When I cared for parents with Alzheimer’s, I was constantly in stress and my body (and spirit) became broken. I lived in a world of grief (for the past) and worry (about the future).

But throughout that challenging time, I learned to go back to two things that I had practised as a young woman and throughout my life. I began to take them more seriously, with attention and awareness. Meditation and yoga (and eventually Tai Chi) saved me.

More accurately, the steady and constant practice of both yoga and meditation on a daily basis transformed me. Slowly I began to heal my spirit. My mind and body followed. Stillness and silence are great healers. (Qualities that we attribute to the majesty of trees.)

Today I believe that mindfulness (staying present in the Moment throughout the day) and recognizing my emotions and feelings and not trying to divert, distract, or dull them, has opened me to a richer life – one filled with acceptance, non-judgment, creativity, and wisdom. Compassion, love and mercy are part of the whole package.

Meditation has taught me that “I am the sky; my thoughts are just clouds – that come and go.” (All the great meditation, mindfulness, and spiritual thinkers subscribe to that thought; most notedly, Pema Chodron and Thich Nhat Hanh.) We are impermanent. Every minute 300 million cells die within our body. Our bodies are in constant flux, as are our daily lives. As are our thoughts.

We are reminded in meditation to breathe through the nose – breath in, breath out – and yet if we stay focused on the breath, we will begin to notice that each and every breath is different. Sometimes I breathe in 8 seconds and hold, and sometimes I breathe in 10 seconds, and exhale without holding. Sometimes I feel the coolness along the tips of my nostrils, and in the next breath, I notice an itch. Sometimes my belly expands, and sometimes I notice not as much expansion. Each breath is different.

If a fundamental thing such as breathing is different each time, then we begin to recognize that all things are changing. All the time.

The trees teach me about impermanence. They are a daily reminder. They are my cheat sheets. I need cheat sheets – they keep me grounded. (Pun, not intended.)

When I remind myself that my moods are temporary, that a particular challenging issue has me stumped and filled with worry, that a friend is suffering, I turn to the universal truth of impermanence: All things are transient. This, too, shall pass. Today the trees are nude, tomorrow they will be wearing their green dresses. My dark mood will lift. In time the challenging issue will either resolve itself, or I will gain wisdom to see it differently. My friend who is suffering will find relief.

As humans, we will adapt better to living a full and happy life when we let go of the fear of change. We will breathe easier when we learn that within the changes that take place, lies ephemeral beauty. That a decayed and rotting tree will soon nourish the earth. And another tree will be born.

When we perceive change as not right, not wrong, just is…we will teach ourselves to adjust to change, and eventually, to accept change. Acceptance leads us to a happier life. Happier? No. Wrong word. A balanced life. That’s what I strive for. Happiness is fleeting. I desire balance or equanimity.

Naked, November trees remind me of transition: from a rich and verdant existence to one of bare essentials. Like us. Whether we accept it or not, we are all aging. At this very moment. Yes, all of us. By the time you get to the end of this blog, you and I will have lost a billion cells.

Naked, November trees remind me of essential truths: we are all going to die. Everything is impermanent. Many things are inherently beautiful – even the gnarly roots that surround an old, decaying tree.  Awareness and attention are transformative. We are meant to be whole, not perfect.

As my son’s last text reminded me of the importance of “not right, not wrong; just is,” those powerful words inspire me. Acceptance. Reality. Truth.

Besides, I need not worry. Everything will change. In a few seconds, or a day, or weeks. Or years.

I think my trees are teaching me a lesson: Don’t worry. Be happy. Better yet, be balanced.

 

 

 

 

 

I seek refuge in mindfulness

This morning, as other mornings, I turn to the skies to align my day. The dawn’s sky is navy blue and red – streaks that look as if a mad painter has swished his brush to and fro with a flourish. And peeking through a pocket or two, sits the robin’s egg blue sky.

It’s beautiful. I close my eyes.

I need to be silent for awhile, worlds are forming in my heart.  Meister Eckhart

I have turned to the dawn’s sky as refuge from the news. I did not stay up late to watch the election results. Instead, I awoke at five as usual and my husband has leaned over and whispered to me, “You are not going to be happy with the election results.”

His words caused me to leap out of bed. Stunned, I watched the CBC news.

I’ve spent my last ten years trying to live a life of simplicity, wholeness, and lovingkindness. I’ve surrounded myself with people who share similar beliefs, values and intentions. We strive to live fully, creatively, in love and compassion. Some of us meditate and live mindfully; some of us pray; and some of us share with John Muir, that Nature is my Church.

And although most of us are not Buddhists, we strive to embody its’ philosophies or tenets: Do no harm; Lovingkindness and generosity; Right resolve, right action, right speech, right concentration, etc.  All philosophies shared with Christianity and other world religions.

So this morning I feel the earth has shifted. I feel that worlds are colliding (in the immortal words of Seinfeld’s beloved character, George).

Everything has changed. Nothing has changed.

We carry on. We continue to be aware – to be mindful of the moments that make up our days, our lives. We continue to laugh, to cry, to support one another, to pray, and to meditate.

But for me, I vow to see more, to see clearly – to remove the rose-coloured glasses that prevented me from seeing and acknowledging the truth – that many suffer. And they suffer deeply.

When I wrote my free ebook on caring for parents with dementia, I offered to the reader that all of us, including those who suffer with Alzheimer’s and other dementia s, want to know that we matter – we all want to be seen, to be heard, and most of all, we want to know that we matter.

For me, this is the lesson that we have been profoundly offered.

My grandma would say when things go wrong it’s a Buddhist gift.  The Provence Cure for the Brokenhearted, Bridget Asher

Let us carry on today with eyes wide open. In awareness, may we really see each other. And let us touch base with the stillness within each of us, that continually guides and steers us to a life of acceptance, love, kindness, compassion and generosity.

I intend to let go of the discord and toxic energy that I felt this morning when I first turned on the television.

Instead, I turn to my strengths: honesty, trust, compassion, curiosity, service, creativity and connections.

All gifts.

The more we accept and expand our own unique gifts, the more we can share and connect with others. And all of this begins with awareness.

When we live in awareness (that is, we begin to pay attention to each moment) we change our perceptions. In mindfulness, we perceive the many acts of grace that surround us.

Acts of grace. Those are the gifts that will transform us.

 

“Oh, grandma. Look at all the other grandmas!”

I’m really getting tired of how people react to a long-term care facility. And I’m really getting tired of how people treat someone who has a dementia as if that person no longer mattered.

Family members and visitors (and once in a blue moon, a staff member) will often lean in and whisper to me, “Just shoot me if I ever have to live here. Just shoot me.”

And even though I understand where they are coming from – fear – it still hurts me when I hear the comment. How can we accept our present moment, when we are living in such deep fear?

What do we fear? We fear getting old, aging, illness and disease, losing our memory, losing our physical capabilities, losing control, and dying. Our deepest fear is that no one will take care of us when we cannot take care of ourselves, and that we will spend our last days in a long-term care facility – alone.

But I also believe that we fear that we will no longer matter.

When we constantly judge long-term care facilities, and when we dread the weekly or bi-weekly, or daily visits to them, do we not deny our loved one who lives in the care home dignity and respect?

Are we not (in a not so subtle way) expressing distaste for the space and, therefore,  disrespect for our loved one? Isn’t there an undertone of dread and dismay? “I’m so glad I don’t live here (thank God!) but hey, mom, hope you settle in here nicely!” I can’t help thinking of that line, See ya, wouldn’t wanna be ya!

When I wrote an eBook about my experience of caring for parents with Alzheimer’s, I included a story of my friend who visited her mother in a long-term care home and took her granddaughters to visit. Her one granddaughter grabbed my friend’s leg and hid behind her. She began to shake; she was terrified.

Her other granddaughter stopped dead in her tracks, looked around the spacious, open activity room filled with residents, and clapped her hands. With a big, silly grin on her little face, she exclaimed, “Oh, grandma. Look at all the other grandmas!”

From that moment on, her granddaughter was always excited to visit her great-grandmother.

And I am willing to bet that my friend’s mother (and all of the other residents) looked forward to her visits, too.

When we visit our loved ones with dementia, do we visit with an open mind? Or do we visit with dread? I believe that our loved ones sense our state of expectation (or energy) when we visit. What if they can feel the dread?

When I volunteer at the long-term care home where my mother used to live, I see a lot of unhappy residents. But I am also witness to many beautiful moments of love, laughter, joy, kindness and compassion. These small moments are exquisite.

I see wives, husbands, daughters, sons and grandchildren who visit daily or bi-weekly. I wish I had a dollar for every cup of tea or coffee or cookie that accompanies most visits. Many cups of tea are shared with residents and their loved ones. And here’s the beautiful thing: Many of these same visitors bring extras for other residents. (And staff.)

When I visit some residents and enter their personal rooms, flowers often welcome me – some are elaborate bouquets and others are simple posies. Greeting cards, postcards, posters and photos are pinned to bulletin boards or line the window sills. Handmade quilts or knitted afghans line the bottom of the beds, or are draped over comfortable, cushy bedside chairs.

In a quick glance around the room I can usually spot the family who cares about their loved one’s well-being. Books are piled high; bird feeders that overflow with seed hang outside the windows; walls display framed photos of family life, horses, dogs, ships, farms, landscapes and cityscapes from their home countries, angels, prayers, and life affirmations: Family, Love, Laughter top the list.

I’ve witnessed personal support workers who sneak extra cups of tea (and cookies) to the resident who has a sweet tooth; I’ve witnessed staff lovingly hug residents and rock them as if they were new-born babes. And I’ve leaned against the wall with tears in my eyes while a personal support worker has sung to a distraught or confused resident. (You Are My Sunshine is definitely top of the charts here.)

I have witnessed the residents who have no dementia support those who do. Residents look out for one another, and care for one another. Hugs and pats on the arm are doled out freely and frequently. (My mother who wandered the hallways in her wheelchair would often be returned to her room by another resident, Here, Gwen, you live here. And her dining companions would often greet me to report my mother’s latest skipped meal. You should know, my dear; your mother is not eating properly.)

When you witness the small acts of kindness and compassion, you begin to understand the deeper meaning (or at least the lessons within) of aging, disease, dying and death; you begin to understand that we are all connected – that we are all One. You begin to understand that love makes all the difference.

We are not meant to live forever in our physical body. We are all going to age, and one day, to die.

When we accept this unchangeable fact of life, we can begin to let go of some of our fear.

Instead of announcing that I would rather die than end up here in a long-term care home, why not begin to make life easier for those who do live here. Why not visit more often, not less; visit with love, not fear; visit with anticipation, not dread. If you are disturbed by the management and care of your loved one, visit often so that you can become an advocate. Become better informed: visit the care facilities website, the Ministry of Health’s website, and learn what the basic standards are. Speak up if you have an issue. Learn the names of the staff and begin to advocate for your parent. Attend the care meetings. Become a visible presence in the home. That will make a difference.

But recognize your emotions and discern whether you are fearful of the place because I dislike all facilities, like these; or do you have legitimate complaints about care.

Acceptance is a choice.

We can all open our eyes and choose to see the love, the laughter, and the joy that is still present – within the home, and within our loved one. They still matter.

When we choose to experience the joy in the present moment, disease, aging, and death do not disappear. But we will transform ourselves. Because in spite of the suffering, we choose to experience the wonder and awe in the most simplest of moments. We choose to see the beauty in everything – even in suffering. We choose to see the strength, the resilience, the exquisite vulnerability.

Suffering reminds us of some universal truths: We are not perfect. Nor is our body. We are human. Humans suffer. Life is not just. Life is not always balanced. To be whole, we must accept the good and the bad. Love can make a difference. In the last moments of life, love is the only thing that matters.

Over time I have learned that within us is an invincibility – that no matter how life unfolds, we endure. I’m still here. You’re still here.

That self-knowledge matures us as we recognize that challenges in life will not defeat us. Those same challenges (or crises) may fell us to the ground, but we will get up – sooner or later.

That’s one of the lessons that I have learned on my journey. When I visit the care home (or a hospital), I am reminded that when I first entered these halls so many years ago, I was heart-broken. When we had to make the decision to enter my father into a long-term care home where he lived for a short time before his death, I wept for hours. I was felled.

Now I visit with love and joy. I got up. I am still here.

I have absorbed the wisdom and strength that is offered to me each time I visit. I am not hear to cure anyone or fix anything. My presence is enough. (That’s another lesson that I have learned.)

I am here to just visit. My presence alone validates and honours the residents. My presence alone shares their pain and suffering. My presence alone says You are worthy. I care for you.

Laughter, love, joy and compassion tether us to our spirit. Or, perhaps laughter, love, joy and compassion is our spirit.

I challenge everyone who visits someone in a care home (or a hospital) to let go of their basic fears. Remember the little girl who clapped and exclaimed, “Oh, grandma, look at all the other grandmas!”

 

 

Caregiving and Mindfulness: Gifts

overnight, autumn crocus appears

overnight, autumn crocus appeared

There are a lot of articles, blogs, books, videos and websites that focus on those who care for people who have Alzheimer’s and other dementia-related diseases.

And that’s because the role of caregiver is not an easy one. Whether one cares for a person full-time or part-time, the stress is unbelievable.

One of the reasons there is so much content on the Web and support for the caregiver is because many caregivers become ill or undergo life-threatening illnesses themselves, perpetuated by the stress.

From my own personal journey (and watching others care for their parents) I have learned that a great deal of the stress is caused by our non-acceptance of the disease and non-acceptance of our new reality.

For me, mindfulness and acceptance led me to a new awareness of the disease, to a more fulfilling relationship with my parents, and to a new way of dealing with loss and sorrow, as well as aging and death.

Mindfulness led me to loving kindness and compassion for both my parents who had Alzheimer’s, and for myself. I had spent a lot of time beating myself up in the past, and self-compassion completely transformed me.

Mindfulness is really just another word for awareness or paying attention. And most people who do not practice mindfulness or meditation are completely unaware of their underlying emotions and thoughts. Thoughts and emotions are connected – we cannot have negative thoughts without a negative emotion following.

When we live in a hurry-up culture and a culture that emphasizes the ego, most of us are in the dark about how other people feel; most of us don’t pay attention to our own bodies or emotions, let alone another person’s.

The challenge of caring for someone who has a dementia-related disease leaves very little time for the caregiver to dwell on his own emotional state. And that’s a problem.

Because it is in mindfulness or sitting in silence (or meditation) where insights to our real state of mind occur.

Most caregivers spend their day supporting their loved one and managing their symptoms: toileting, bathing, dressing, feeding, laundry, doctor appointments, and management of medicines/prescriptions. Sometimes the person is in a wheelchair or uses a walker or cane so heavy lifting or supporting the individual is necessary throughout the day and night, a physical toil.

Many nights the bed linens will need to be stripped and laundered. And most times, pajamas, too.

If the parent or loved one has ‘sundowning’ (which is fairly common – day and night turned around) then the caregiver will be awakened throughout the night and on “high alert” to listen for the night wanderings. Unfortunately, the person with a dementia-related disease is often agitated at this time and symptoms become more difficult to manage. Ultimately this translates into less sleep for everyone in the household – especially for the person with the disease and for the primary caregiver.

As I wrote in my free-eBook, meals, laundry and housekeeping will need to be attended to throughout the day – meals, snacks, drinks, toileting, personal care; repeat.

The individual will need to have regular medical check-ups, blood work, hospital appointments, and prescription pick-up. Banking and financial matters will be the primary caregiver’s responsibility, along with your loved one’s home maintenance and responsibilities, not to mention your own home’s maintenance and care.

And sadly, most of these tasks will need to be done with cajoling and subtle manipulation so that the individual will oblige. Many persons with Alzheimer’s will be upset with the caregiver, stubborn, angry or resistant and demanding at times as their world is changing too quickly for them to understand and their loss of control is terrifying to them. Many stubborn acts of resistance are due to their fear – that is the only way for them to express their loss of control. Both the person with Alzheimer’s and the caregiver will be emotionally and physically weary.

Caregiving fatigue will often follow and it has many symptoms: fatigue, sleep deprivation, anxiety, stress and depression. And the experts remind us that stress leads to illness (which makes us more stressed).

When our stress levels become so high, we become disinterested in life and we begin to lose hope that this difficult journey will ever end. Did I just write that we begin to lose hope that this difficult journey will ever end? What kind of horrible caregiver am I to think such a thought? Now, I am more stressed.

What if I told you that it is normal to feel some resentment, anger and guilt while caregiving? What if I told you that while doing research over the years, that I have discovered that it is perfectly normal (when stressed to the max and so bone-weary) to have such emotions?

We cannot take care of ourselves and hope to heal if we cannot feel compassion for ourselves and that process begins with recognition and awareness of our thoughts and emotions.

And that is where mindfulness is the key to healing ourselves.

Our anger or resentment or caregiver fatigue is a red flag to remind us that we are off-balance – we need to pay attention to an issue that hasn’t yet been accepted or resolved. (Perhaps you have not accepted that your loved one has this disease, and so you are still fighting it. Or, perhaps you resent the time that it takes to care for someone because it means less time to care for your spouse and children. Or, perhaps you are caring for your spouse, and deep down you are terrified of being left alone.)

If we sit just for a few minutes throughout the day, in silence and in stillness, and ask ourselves a few questions:

Why do I feel this resentment?

Why am I so angry?

Why do I feel guilty?

Why am I trying so hard to be the perfect, supportive caregiver?

Allow yourself to just sit with whatever arises.

With honesty and truthfulness, allow yourself to look at your situation, at your relationship with your loved one, at the disease, and the sorrow and the sadness.

Allow your feelings and your thoughts to come up. We cannot heal if we do not recognize and then accept these emotions that we have been spending so much time trying to hide. We think if we push the emotions down or away (or ignore them) that we will be able to carry on. But the truth is that these emotions (without addressing them) will become toxic and harmful. The truth is these emotions never go away or disappear – they just fester.

Recognition and acceptance of our underlying emotions can (in time) lead to compassion for ourselves, and this self-compassion will lead to forgiving ourselves. When we begin to forgive ourselves with compassion, we will open our hearts to forgiving others. Our compassion will expand towards others, and kindness and love will enter.

It’s a heavy burden to feel guilt and resentment when caring for a loved one. Imagine how freeing it is to allow ourselves recognition, acceptance, and forgiveness of our emotions.

Imagine how healing it is when we accept that we are mourning for our loved one – even though he/she hasn’t died! (Yes, it is normal to grieve before your loved one dies – anticipatory grief.)

It’s okay and normal to mourn the many losses that surround the prognosis of Alzheimer’s disease: our loved one is no longer the person that he was; perhaps our loved one does not remember us; our loved one cannot support himself; our loved one has lost many of his abilities; our relationship has changed – we are the primary carer now (the roles have reversed); we are fearful of the future and what it may bring; our life has been drastically altered; our own health and well-being has suffered; perhaps our family sees less of us because we devote a full day to caregiving; we want our old life back, before Alzheimer’s entered our life. And we are full of sorrow when we see how our loved one suffers. We are heart-broken.

Once we face our fears (and name them aloud), we are able to let go of them, almost as if these thoughts that float around in our subconscious create havoc wherever they land, and once acknowledged – that is we pay attention to them – they begin to shrivel up and slowly dissipate. (Have you ever had ideas and thoughts jumbling around (portmanteau word: a jumble that tumbles) making no sense, and then began to write? Just the process of writing your stream of consciousness helps. As if we pluck these ideas from the interior muddle, and plop them down onto paper and poof! They no longer randomly float in our head. The muddle clears.)

I often think of Pema Chodron, Tibetan Buddhist, who advises us that when we run from the monster in our nightmare, we are terrified…but when we stop and turn around and finally stare the monster down…we find peace. The monster shrinks in size, and when he shrinks, we become more aware of his vulnerability. We begin to feel seeds of compassion for the monster.

When we dwell in our heads with thoughts and fears about… what if?… we are not present. When we wish the difficult journey was over or that it had never happened, we are rejecting the present moment. We are rejecting our reality; we are rejecting life as it unfolds.

Caregiving is a challenge, and there is no denying that fact. But when we cannot accept the prognosis or our reality, the challenge will even be more difficult. Most importantly, our time with our loved one will be fraught with stress and sadness.

Mindfulness or being present or paying attention to the present moment will lead us to a compassion-filled journey. It will allow us to be authentic. We will mourn, yes. We will cry, yes. But those moments will be real. We will not try to deny our sadness. Instead, we will lean into them and just feel them. Allow them space. And it is in that space, that Grace enters. And as Thich Nhat Hanh often reminds us to tell ourselves, “My darling, I am here for you.”

When we allow compassion, love and Grace to enter, our awareness will begin to notice the joy and the love within the sorrowful moment.

While I mourned by my mother’s bedside while she was dying, I watched the sun rise each morning. The magnificent palette of the skies will stay in my memory bank forever, as will the loving and kind gestures of the staff. Those moments are joy and love-filled, side by side with sorrow and tears.

Mindfulness allows for an easier journey because it will be filled with little sacred moments – of laughter, peace and fulfillment, reconciliation and forgiveness. Sorrow and tears, too.

Gifts; all gifts.