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.

 

 

 

A new dawn; a new sunset – book-ends

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sun rise on the way to London

When I arose just after six this morning, my living room was pink. The white sheer window shades allowed the sky’s dawn to enter in all its glory. The pink had saturated the walls and ceiling and when I scrunched my eyes, I am almost certain that even the air was pink.

But the rosy glow didn’t last long, and by the time I turned away from the screen door as I watched the sky’s pink palette, the magic had disappeared in my living room.

I never get tired of the show. It’s the reason I am an early riser.

The sunrise and the sunset of each day are gifts – gifts that bookend each of my days. The simple ritual of breathing in the dawn’s glory, and hours later, breathing out the dusk allows me to make a mental realignment.

A realignment that grounds me. I become centered, focused on living mindfully. My bookends allow me to be present, in awareness: to stop and listen to the sparrows and wrens that live within the branches of the viburnum (that should be pruned, but I don’t want to disturb their homes); to pause when the Harbor Bay bell that hangs from the shed that my father built us twenty years ago, gongs – a gong that resonates so beautifully that no matter who is in the yard, they stop and savour the sound; to kneel beside a resident in the long-term care home where I volunteer, to listen deeply, and witness her story.

The shed that Dad built

The shed that Dad built

harbour-bay-bell

harbor bay bell

My mind is cluttered with thoughts throughout the hours – mindfulness does not eliminate them. But the practice allows me to align them – to at least put some order to them.

I’m aware of the big questions in life: Who am I? What do I want? What is my purpose?

And mindfulness allows me compassion for myself and those thoughts that consume me – never-ending thoughts, like books stuffed in a bookcase – piled high, teetering on chaos.

Mindfulness allows me to peruse the titles: Nature, Family, Aging and Disease, Death, Creativity, Art, Writing, and more. The shelves are crammed.

Mindfulness allows me to be the observer – detached, yet alert. I notice the thoughts that often consume me when I am walking. I write in my head, stories that I discard later or save to paper. I draw in my head. Water and the elements of nature are a never-ending, repetitive meme. What colour is that blue? I must learn how to use watercolours. OMG, is that sky not the most beautiful thing ever? The pink of that canna lily reminds me of the shawl that we bought my mother one Christmas – the same shawl that my sister now wraps around her shoulders during meditation.

The observer within me embraces all of the subtitles: envy, judgment, inadequacy. (I own the series of all of those subtitles.)

But here’s the thing: mindfulness allows me to recognize the two prevailing themes that underline all of my thoughts. Love and fear. Thankfully, this life-transforming strategy opens my heart to self-care and compassion – self-care and compassion lead to gratitude, joy, love and acceptance.

Acceptance means that I recognize the thoughts that I have – of envy, judgment, inadequacy – I recognize the titles, I thumb through a few pages, and then I discard them. Enough. Life is too short to read the book. Instead, I recognize the fear and I just sit with it. I have learned to trust that soon those thoughts will disappear.

Thoughts are transitory; impermanent; illusions.

The joy that I experienced this morning while in the pink glow will return tonight when I experience the sky as the sun disappears.

Tonight. Tomorrow morning. Tomorrow evening.

The jumble of thoughts and all its disorder and chaos will realign itself. I will re-set.

And it is this re-set that reassures me that all is well.  I am. Cluttered mind and all.

Whether I need to re-set multiple times throughout the hours (and that is inevitable), or I simply observe the thoughts, I learn to accept the moment. Whether the books are jumbled or the tomes are straight and orderly – I am content to be in my skin (and in my mind).

I have learned that if I am not content…I wait. My thoughts will dissipate and new ones will replace them.

The library in my mind is ever-changing.

Sunrise, sunset. Bookends. Gifts.

sunset at Canatara

sunset at Canatara

 

Why continue to blog?

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

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

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

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

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

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

I know this without any doubt.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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