Tag Archives: kindness and compassion

Thanks to caring for my parents, I choose to see life wearing rose-coloured glasses

Chronicles of a Chronically stressed out Caregiver. Meditations and Mindfulness Changed My Life. Mindfulness, Meditation and Me.

Let’s be honest. When you are sitting with a notepad in your lap, and the only thing on the paper are titles for the eBook (instead of actual writing), you know that you are in avoidance mode.

Damn, again? At my chronically gifted age one would assume that old trait of mine (avoidance) would have been ‘fixed’ years ago, but sadly, the only thing I do better today is actually notice when I am in avoidance. Thank you, mindfulness and meditation.

While writing another eBook, I find myself enjoying longer than normal walks, hours of playing in the dirt (gardening), and sitting on my freshly painted cobalt blue Adirondack that now matches the cobalt blue bird bath, while sketching my amazing garden. (I am entitled to call my garden ‘amazing’ because this little piece of heaven gives me peace and equanimity. And peace and equanimity is amazing.)

My dilemma is what do I give up so that I can write more?

I have plenty of time to do the things I like to do, but I keep adding to my list of “things to do that give me joy, or wisdom, or fill my curiosity” – I keep trying to cram more into my days.

I am so grateful for this time – no matter the season, or the day of the week, or the time of the day – life is good.

I choose to view life with rose-coloured glasses because I can. It’s that simple.

I learned that how we perceive life and how we co-create our lives is our choice, and that lesson I learned when I closed my children’s retail shop so that I could care and support my parents: my father had a dementia (most likely Alzheimer’s) and my mother was showing signs of a dementia-related disease, also. My life spiralled from an exciting one of fun-loving staff and customers, buying trips to the clothing marts, new encounters and learning possibilities every day, to one of stress, resentment, guilt and burn-out.

Instead of embracing each day filled with hope and gratitude, I dreaded each day as I faced endless chores and responsibilities, grief, and sadness.

Chronic stress nearly felled me, but I came through the challenge eventually as a different woman. I went into the experience with blinders on, and I came out wearing rose-coloured glasses.

I say rose-coloured glasses because my experience of caring for our parents changed my life; the experience changed me.

When my father died, both my sister and I felt that his disease, his dying and his death transformed us and gave us many gifts: wisdom, forgiveness, love, compassion, honesty, and Grace.

Wisdom to realize that self-care is integral to a purpose-filled and joy-filled life – we cannot care for another when we do not care for ourselves.

Forgiveness in the many times our parents would tell us stories of their childhood (those are the stories that are often intact when someone has Alzheimer’s) that shone a spotlight on challenging traits (things that they did that pissed us off) or events that happened (that pissed us off).

My mother would throw these (illuminating) stories out to us – the stories were like candy that she lobbed at us. We would excitedly jump up and gather them to our hearts. Those stories gave us meaning and understanding to her life, to our father’s life, and to ours.

Love and compassion grew as we spent so many hours with our parents, as we truly began to understand their lives, the hardships, their sacrifices, and the reasons why all of it was important – family! Our parents do what they do – for us. That knowledge lit something in us, and warmed our hearts.

Honesty grew. In the last days of disease, dying and death, we are our most vulnerable and authentic. Truth matters.

And Grace. There are many times in life that we know that we are surrounded by Grace, but I am always humbled and awed when Grace supports us at the bedside of our loved one who is dying. It is Grace that holds us up and whispers, “lean in” because when our bodies and minds move forward (instead of away), we learn and we expand. We grow.

These lessons have left me with a passion to help and support those who care for loved ones who have a dementia-related disease, to volunteer with residents in a long-term care home, and to advocate for change.

Like the families who have loved ones with dementia, I, too, fought my circumstances so I recognize that none of them accept their reality (they are still fighting with truth), and in my humble opinion, it is this conflict that causes the stress. We are not meant to fight; we are meant to lean in.

So today (Father’s Day) I am writing this blog as a tribute to my father (and my mother) who allowed me the privilege of caring for them – it changed my life.

I get to choose how I define my life (even if I don’t get to choose the crap that happens); I get to choose to live in gratitude, honouring the simple moments – the scent of lilies in the air, the sparrows and starlings squabbling within the hidden recesses of the viburnum, and the sun’s reflections – bands of white dancing to and fro – on the ceiling of the living room.

When we choose to define our lives from the lessons that we learn, we empower ourselves; we begin to trust ourselves, and we begin to recognize that all the answers to life are within us.

All the answers to life are within us. Thank you, Dad (and Mom) for that gem.

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Share the road, people

During my morning walk, I passed a sign this morning that made me pause.

Share the Road

Is not our whole life’s journey about sharing the road?

Perhaps our politicians and world leaders need to take a pause and reflect on the mantra share the road.

As part of a cycling campaign to promote road safety and well-being for everyone – cyclists, motor vehicles, and pedestrians alike – not only do our roads become safer, but our communities and cities evolve when we cooperate and support each other.

When we become aware of the power of these three little words – share the road – their meaning or significance to our world’s health and well-being becomes central to our actions.

We share ourselves with others every day. We share our ideas, our creations, our kindness and compassion, and our love. And we share our energy. If we exude a peaceful or balanced energy, we share a peaceful presence; if we are angry, we share our anger.

Like road rage, toxic energy hurts all of us. Toxic energy lingers and when it settles in for the long stay, real harm occurs within our bodies, and later, spills into our families: our health suffers, as well as our circle of influence. An angry co-worker taints the workplace. An angry parent damages a child.

Many of us read blogs that motivate us to do better – writers share ideas, experience and expertise that teach us, expand us, and push our boundaries. In sharing, bloggers and writers share pieces of themselves in every post, article, column or book. As faithful (and interested) readers, we accumulate and expand our knowledge, our creativity, and our perceptions as we assimilate these new, and sometimes, provoking ideas and thoughts.

A shared idea or expertise is an opportunity to transform another being – that’s a pretty powerful thought.

From my experience, every day when I tune into another how-to paint video posted on-line, I am not only grateful for these gifts, I am truly motivated to share my joy of learning how to watercolour from these talented people. (Check out videos and tutorials on YouTube – watercolour painters, Peter Sheeler, Grahame Booth, Steve Mitchell, and Grant Fuller…the list is endless.)

We  significantly impact others when we share the road.

The verb share, I believe, is an exchange of energy – giving and receiving – an energy that reflects only one part of the bigger whole. One part. Share means partnership or a connection to another part. A connection.

One part. A connection.

What if when we share, we are connecting to another part of the whole – the whole being the Oneness of the universe?

What if when we share, we are connecting to the Oneness – of you and of me? Perhaps that connection to the Oneness of life is why we feel such satisfaction and joy when we do support others?

When I share my ideas or my creativity, I can feel the expansion within; that expansion comes from my inner self which is realizing (in part) my potential. When you share something of value – your ideas, thoughts, creativity, experience, expertise – begin to notice how you feel. Does it give you a sense of well-being, a sense of purpose, or joy? If the answer is yes, you are sharing (connecting) to a greater part of the Universe – you are impacting others, and your soul is loving it which is why it is so satisfying!

For those of us who volunteer, we already are aware of our impact – we share our time with others and benefit greatly from the interactions. Volunteers will tell you that it’s about sharing; sometimes, as volunteers, we feel selfish as we receive so many benefits, more than we give! It’s an exchange of energy that is like nothing else on earth. (And if you are not feeling it, then you are probably in the wrong kind of volunteer work.)

My daughter-in-law and my son are very creative people (art and musically inclined) and they are keen on weaving their careers, their home, and their passions with the care of the earth. Every decision is based on the sustenance and well-being of the environment. They buy in bulk and store beans and legumes, rice and staples in plain, glass jars with screw-top lids. When I offered to plant their front-yard garden with perennials from my garden, they gratefully received my offerings, as long as I allowed for plenty of space for home-grown vegetables. If last year is any example, peppers (all varieties), kale, spinach, cucumbers and squash will find homes in friends, neighbours, and fellow staff members’ kitchens. Old, past their prime shrubs, are pruned, instead of dug out and discarded. Every decision is based on a careful philosophy of reduce, re-use, recycle.

Their shared philosophy of environmental awareness has spilled over to our lives. Here’s the thing: their actions have influenced my own decisions. We are constantly re-thinking purchases: Do I really need this? (Don’t I already have a set of watercolour brushes?) Can I re-use these old shutters or give them to a vintage store? Do I really need to replace my worn cloth napkins?

I no longer buy cases of water bottles or coffee filters (a reusable one is just fine); we’ve reduced our weekly trash bags to one small bag; we’ve reduced our cleaning supplies to only those that are natural or home-made; soaps and shampoos are chemical-free; and we’ve reduced water to minimal usage (alas, my hydrangea are thirsty often).

Small actions, but as I mature, my actions grow, and so does my influence. Small actions are like seeds – they sprout.

Our philosophies impact others every day. I may not embrace everything that my son and his wife do, but their actions have taught me to pause before I act or commit.

We share the road from birth to our last dying moments. Surrounded by family and loved ones when we give birth,  the circle of life continues when our loved ones join us at our final good-bye.

When I sit with a resident who is dying at the long-term care home where I volunteer (and where my mother lived for two and a half years), I share many moments with either family or friends who drop in, or other residents who want to say goodbye.  Staff, and sometimes other volunteers from the palliative volunteer team, join me during our vigil.

And always I walk away from the experience with a humble, but wondrous feeling that I have shared in a transformative moment. In those hours (or days) of sharing, I am humbled by the gifts that the staff, and others, and I share – compassion, kindness, love, generosity, wisdom, and giving. Each of us has this capacity to give and share, even when someone is dying. Perhaps because someone is dying. Even at our most vulnerable, we share.

Even at our most vulnerable, we want to connect. When we share a piece of ourselves, we expose our vulnerabilities – and that is when we are our most honest and authentic. We connect with others because they sense (sometimes at a subconscious level) that we are sharing a piece of our true selves, and their vulnerability recognizes our vulnerability.

One thing I do know: that it is in the gift of sharing this road – that the transformation occurs. It is in the sharing that we meet our greater selves.

In awareness, let us move throughout our day and take note of how much we share the road. We cannot move through our lives without it. We cannot meet our potential without it. We cannot transform without it.

Share the road. Share yourself. And you will find yourself accepting an endless supply of gifts.

If only world leaders could learn this simple act. Just share the road.

 

 

 

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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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.

 

 

 

Migratory geese and lessons

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There is a small park along the shores of Lake Huron just outside my city – a park in between the city and its bedroom community. The park is a public park although there are many days one can visit and be completely alone.

When we were a young family, my sister and her children, my mother, my father and my aunt and uncle would convoy our long journey – twenty minutes in the car – to this park where we would set up a mini-kitchen on wheels, barbecue and briquets, lawn chairs, badminton net, coolers, and fold-away picnic tables. If we could find a shady treed area, we settled in. Back then the trees were not so tall and protective (many young saplings), so we would erect the large umbrellas that we had borrowed from our home’s backyard.

On other occasions in the summer and fall, we would set up our tents and trailer and camp for a few days or more. A short walk in our flip-flops and bathing suits, the blue waters beckoned. Long days on the beach; evenings spent around a bonfire. Idyllic.

These are true gifts that we pass on to our children.

My mother died one year ago and I find myself these last few days in an in-between state – between grief and contentment. Between letting go and holding close.

A year before she fell and was hospitalized, my mother gave me a scrapbook that she had made. The scrapbook reflected my life from childhood through the decades: baby, graduation, wedding, pregnancy, my children as babies, their childhood, their graduation, a son’s wedding; she had included newspaper clippings from when I had opened two stores. This simple, unadorned scrapbook reflects a life-time ago. A life before dementia.

In one of the old photographs, my father and my two sons are holding hammers, wearing hard hats when the three of them knocked down a doorway in our home. My boys are four, maybe five, years old – their hammers are yellow.

Today one of my sons (after university and working) is now a carpenter, too. He went back to learn the trade a year after my dad died. Papa would have been pleased.

My son framed a copy of this photo and hung it on the wall of his apartment; beside the photo, he hung his papa’s tweed cap on a large brass hook.

Many of the photos show our family celebrating holidays – paper streamers crisscrossing the ceiling; Christmas cards hung on simple white string; tables laden with Christmas crackers and noise-makers. And always present in my childhood photos sit an older couple who rented the upstairs apartment of my parents’ old house.

I remember that my mother always invited them for holiday gatherings and Sunday roast beef dinners. My mother was kind and thoughtful. Even as a young child I instinctively knew that my mother was compassionate – I believe the seeds were planted then, in me. I saw it in all of her actions.

When the couple grew older and older, and one by one disappeared from our family gatherings (and the photographs), I have keen memories that it was my mother who took meals to them on a tray with pink flowers. Sometimes I would trail after her up the stairs to see what mysteries lay in this apartment (that we were told was off-limits).

Once I followed her into the bedroom and found my mother consoling the wife. I was too surprised to see an adult crying in plain view to ask any questions. Later, the ambulance arrived and I did not see our tenant again.

Another snapshot captures my family dancing – chairs and furniture pulled back against the wall to make room for a dance floor. My mother and father, my aunt and uncle, and my cousin, my sister and me…all of us dancing with joy and abandonment. Arms flailing, bodies gyrating, Christmas red and green paper hats still on our heads.

We danced a lot in our house when we were growing up. We used to dance before the war, during the war and after, according to my mother. We danced our sorrows away, she would say. My aunt used to win dance competitions in their home town in England; years later, she and my mother would dress up in their fancy frocks (that spun when they twirled) most Saturday nights. We would be heart-broken because we were left behind.

One time when my mother lived in a long-term care residence, we picked her up and brought her to the cottage that we rented on Lake Huron. My sister and I (as my mother and her sister) love to dance and we often turn up the music and let loose while preparing our evening meal. While our mother stayed at the cottage with us, she required a lot of care and attention, but every afternoon at four, we cranked up the music and danced. One on each side of her, holding her upright, we sashayed, cha-cha’ed, line-danced with our mother. If we had let go, she would have crumpled to the floor.

The neighbour photographed the three of us attempting the Electric Slide – not even dementia could steal that piece of joy from my mother as she swayed in perfect tempo. She has her sunglasses on, and her head is thrown back with laughter. In the photo she looks younger than her age (90); she looks happy. I make a note to myself to include that photo in my scrapbook.

My mother insisted that she wasn’t very smart in school, that her brothers and sisters were the brains of her family. But when I find an old Bible of hers and I open it, I find an inscription in blue ink: To Gwen, for perfect attendance.

My daughter-in-law was standing beside me when I opened the book, and we looked at each other and our eyes welled up. I gave the Bible to her and my son as I know they will honour my gift. It is evident in their home and in the well-worn items that they still cherish that pieces of the past mean something to them: an old vintage chair that we gave them when they were in university many years ago; another old floral chair that was her grandmother’s – both chairs made the final cut when they moved from rentals into their first newly-bought home.

I sense and see traces of my parents in everything, in all, like wisps…

I text my sister, It’s time, and the two of us drive to the green park that is along the shores of Lake Huron, the same park where we have spent so many seasons of our lives, and where now my father’s and my mother’s ashes are strewn. Some under the pines; some flung out in the blue waters of Lake Huron.

We get out of the car and we are silent. We walk under the pines and stand still. We have each wrapped ourselves in our mother’s shawls (one pink, the other peach); it is a damp day but a mild one.

We stand still and breathe in the traces of fall and winter, and after a few minutes we return to the warmth of the car where we have decided to meditate.

Twenty minutes later my cell phone app chimes that our meditation time is up, so we decide to walk along the paved road that trails the lake’s shoreline. As we turn the bend of the road, we sight hundreds of Canadian Geese along the water’s edge.

Many steps later and we sight first, a solitary Snow Goose, then  Canvasbacks wading alongside the Canadian Geese. The further we walk, there are more geese. It’s migratory time. (The Snow Goose is clearly lost.)

The geese are hard-wired to set off to far-away places in the spring and in the fall. These birds will follow their instincts, the sun, the moon and the stars; they will ride the air currents that flow above the winds and the waves.

There is a time and a season for all things. A time for balance. A time for harmony and Oneness.

Joy and laughter; sadness and sorrow. I am learning that the two states are not exclusive of each other. They are interconnected.

I look around at the geese perfectly aligned along the shore lines of Lake Huron’s blue waters – a blue that always takes my breath away.

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Occasionally we stop and share my binoculars to study the birds, the sky and the water; we snap some photos.

And then we continue walking along the path that trails along the shoreline of Lake Huron.