Tag Archives: sorrow

I’m aglow with hope

Christmas lights

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

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

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

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

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

 

 

In remembering my mother, I honour her

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

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

Daily sister chats until her sister died;

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That, too, is her legacy. Her remains.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Acceptance and the reality of a long-term care facility

It happened again. Someone approached me at the long-term care facility where my mother once lived (she died just over a year ago) and where I now volunteer, to talk.

Just when I think I will stop blogging about caring for parents with Alzheimer’s, something happens to pull me in.

This family member looked anxious. She doesn’t visit every day, but she does visit often. And she is thoughtful when she visits. The room of her loved one has all the elements of considered care and placement of mementos – photos, art, books, comfortable chair, lovely seasonal wreath on the door, flowers and plants. Cards and tokens are pinned to the bulletin board. The room is bright and airy; the curtains are pulled back to expose a huge picture window.

One of the most challenging and difficult times is how we adjust to our new reality – our loved one has now entered a care facility. Most of us recognize that this monumental step signifies a final stage; we recognize that it is highly unlikely that our loved one will return home. Unfortunately, our loved one often does not recognize this; they live in perpetual wanting to go home.

This finality unnerves us – it represents many losses for both us and our loved ones. Loss of independence, loss of health, loss of mobility, loss of our home (and all that our home represents) and more.

So as family members, we struggle with the losses and the grief and sorrow that is attached to those losses. And we are tired. We are bone-weary. Many family members carry the load (the responsibilities and the sorrows) alone.

We are filled with incessant thoughts and emotions: a 24-hour, non-stop tour of what ifs? The ever-running reel fills our bodies, minds, and spirits with toxic energy. Self-care took a detour ages ago.

Our attention and our energy has lived in the past or in the future; but seldom, in the present.

Reality lives in the Present. But, sadly, we have chosen to live in the past or future in our heads because we do not accept the present.

So in awareness of my present, I sat down with my new friend. (We are all joined together on this journey.)

Most people just want to talk. We want to be heard. Who else will listen when we are suffering? The rest of the family is suffering, too, right? And most of us want to protect our loved ones from our worry and stress…so we do not share our thoughts. So we hold it in.

And so she talked. And I listened.

And when she had finished, I passed on a little of the lessons that I have learned from my journey – a journey that is rarely unique.

I remind her that “your mother’s journey is not your journey. Even though you share some of it with her, you are not your mother; this is not your life. You are not here to heal her. That’s not your job.”

“Your only job is to love her. And that is evident in your actions and your words. Give yourself permission (and it is a choice) to love life and find joy and contentment, even today, right now, while you visit and care for her.”

Earlier, when I parked my car outside the care facility, I could hear a cardinal in the distance. Its song was distinctive. I stopped and searched the pines that grow along the fence of the grounds of the facility. I spotted him (deep red) at the top of the branches. I stood and listened to his song for a few minutes. I was present.

Later, when the woman approached me, I knew instinctively that she was seeking me out to talk. I have learned to pay attention to present moments when I visit and volunteer; I have learned to listen to my instincts when I encounter residents, staff members, and family.

Listening and paying attention to my instincts is an ability that each and every one of us possesses – but we need to pause to allow our instincts to arise. It’s an ability that we must nurture.

Awareness, first. Awareness is key. Awareness of the fact that we are tired, that we are grieving, and that we have unrealistic expectations: If I do more, visit more, talk more, I can change her (heal her) and she will be happy.

Next, acceptance. A simple concept. Too simple? We have been trained all our life to conceptualize, label, edit, analyze, reject, deny, dismiss…but too accept the present moment? The present moment is reality. Eckhart Tolle suggests that to not accept the present moment means not to accept our reality – and he calls that madness.

How can acceptance lead me to peace? How can acceptance alleviate my problems?

When we accept the reality of the present moment, we let go of expectations; we let go of worry and stress about the past and the future. We let go when we accept and recognize our emotions – oh, I am filled with worry about my mother; oh, I am filled with worry that my life is over; oh, I recognize that I am angry about this situation; oh,  I am filled with guilt.

In other words, by accepting our emotions, we accept the present moment. Acceptance or recognition of our emotions allows us to feel compassion for ourselves, rather than fighting our emotions (which makes us feel worse). So acceptance doesn’t alleviate the problems that we face in this moment, but it allows us to step back and just allow the emotions – space. Space. Take a breath. Allow ourselves to release the pent-up energy of these toxic emotions that are consuming our bodies.

Again, Eckhart Tolle urges us to recognize each moment as if it were our true purpose in life.

That practice can transform your energy. Instead of worrying about the past or the future (what ifs), we can pay attention to our present moment. We would enter our loved one’s room as if she was our true purpose in life. You will accept whatever happens as you enter. Is she upset? Then calmly bring your attention (and peaceful energy) to her needs. Calmly and lovingly. Listen. Pay attention to her face and determine if she is in pain? Is she tired? Is she anxious? Sit down and assess the room. Is it too dark? Are the lights glaring? Is the television on? (Turn it off.) All of the time, staying alert and present, but calm and peaceful. Allow her to recognize that your energy is one of compassion, kindness and love.

In stillness, listen to your own instincts. You might already know what is wrong (you know her better than the staff). Answers will arise within you.

You might suggest a walk outdoors; a shared cup of tea; a story; a visit to another resident’s room or a visit to the activity room.

Or you might just want to lean in and whisper, “I am here for you.”

When the visit is over, hug your loved one and whisper some loving, kind words of comfort. Assure her that you will visit again soon (you don’t need to state a date) and that she matters to you. And allow her to know how much this visit meant to you.

Ignore any words of complaint or of dissatisfaction (or worse). Detach yourself from her negative energy. Recognize that her complaints are valid; but that you cannot heal them or change her thoughts.

You are doing the best that you can. Your presence (staying present to the moment) is your best. And that is enough.

At the moment, while I am writing this post, I glance up and see that it is snowing outside. My back yard is a winter wonderland. After early spring-like weather, and plants that have emerged from the dark earth, the air is filled with large, white snowflakes. I stop to breathe in the view. It won’t last – the temperatures are too high and the ground is too warm. I love this in-between season: winter doesn’t want to leave but spring is impatient; she is pushing and shoving winter out.

I rarely complain about weather – wasted energy, in my opinion, to complain about the reality of weather. Besides, nature never ceases to astound me. Full of beauty and wonder; harmony and balance. And transience. For me, Nature is ephemeral and that is her greatest lesson (a gift).

What I really want to say, but won’t, to the family member who is tired and grieving is this:

You think that the more you visit her, she will appreciate your efforts and tell you that she is happy now. You think that if you do enough for her that she will stop and tell you that she forgives you and that she doesn’t blame you because she now lives in the care facility.”

What if I told you that in all the years that I have spent, either care giving or visiting a loved one in a long-term care facility or in a hospital, or hearing other family members tell me their stories, or volunteering, I have never once heard of a resident or a patient telling their loved one that they are happy where they are – that they like the care facility or that they are glad that they live here. Never.

So what if I offered this: why waste time and energy (and your health) trying to beat the odds? Let go of your expectations. And if you cannot do that, then at least recognize the pattern of your actions. And maybe, in time, you will laugh at yourself (with compassion) that it is not worth the suffering.

Your loved one is on a different journey than you…he or she is suffering from many health issues, including a decline of the body and the mind.

You are healthy and not in decline. So allow your health and wellness be the energy that you bring to the visit.

Everything is transient. Each moment doesn’t last. The winter snow melts and spring emerges.

When we practice living in the moment (in the Now), we begin to appreciate all the facets of the moment – the beauty and wonder of the surroundings, the uniqueness of each person’s face when we meet and encounter people, the love, the gratitude and the compassion that wells up within us when we sit with our loved ones. But we have to allow awareness or recognition of the moment to arise, first. Or we will miss it all.

“Whatever you accept completely will take you to peace, including the acceptance that you cannot accept, that you are in resistance.”…Eckhart Tolle

 

 

 

 

 

 

 

 

 

Pull the car over and just cry

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“Pull the car over and just cry. Give in to your sorrow.”

My neighbour stopped me last Friday, just when I was about to get into my car and run errands. Her mother died a few weeks ago, so I closed my car door and walked over to her.

I need your advice, she said. “I know that your mother died last year and you seem to be coping well.”

I didn’t answer her. I just listened.

She continued, “I drive around and I just want to pull over and cry my heart out. I don’t know what to do with myself or my emotions.”

She said a few more things… about caring for her mother for a long time, and how lost she felt now that her mother was gone. And she talked about how sad she felt. Everything she said resonated within me.

Finally she took a breath and looked at me, “What should I do? Do you have any advice?”

Before I could edit my words that were forming in my head, the words popped out…”Why don’t you just pull over and have a good cry? Give in to your emotions.”

She blinked. She blinked again. She stared at me intently. “Oh!” she whispered.

Her eyes welled up and she whispered, “Thank you.” And she turned away from me and went back into her house.

“Pull the car over and just cry.”

How little we need from each other when we are overcome with grief and sorrow.

While I was writing my Ebook about caring for parents with Alzheimer’s, I took a couple of courses in palliative care, and one of our instructors (a palliative nurse for many years) encouraged us to read a book, I Don’t Know What To Say – How to Help and Support Someone Who is Dying, by the late Dr. Robert Buckman.

When I first learned of Dr. Buckman, an oncologist, he hosted a television show in the 80’s, a show about sex. He was a warm and funny man and I immediately became a fan. When I Googled Dr. Buckman, I learned that he came to Canada in 1985 and worked in Sunnybrook Hospital and later, Princess Margaret Hospital in Toronto. He wrote a lot of books and publications and made many videos, combining medicine and humour. Interesting – I have always thought that people who combine science or medicine (that is, facts and information) with humour are gifted.

Dr. Buckman’s book set me straight many years ago. It was a difficult book to locate as it is out of print, but I bought a second-hand copy, on-line. I consider his I Don’t Know What To Say… a bedside table book – it is my go-to reference book whenever I learn of a friend’s poor diagnosis.

If I had to identify only one lesson that I have received from this book over the years, I would have to say it is: Listen. Say nothing. Just listen.

So when my neighbour asked me for advice, my other persona (I can fix this! persona) wanted to hijack the conversation; but, thankfully, I could hear Dr. Buckman whispering in my ear, just listen.

I wish I could say that I am a good listener all the time. It is actually the only 2016 intention that I made this year: Listen more. But the reality is that I often talk too much, especially when I am confronted with someone’s need to bare their soul to me. My default reaction is “Okay, I have just hung my armchair psychoanalyst shingle – I’m In – and I am ready to dispense advice.”

But wisely, Dr. Buckman encourages us to just stay still when someone comes to us with their sad news – a poor diagnosis or prognosis or a death of a loved one – and just say nothing.

He reminds us that patients or family members of someone who is ill or dying do not want us to solve their problems; they just want our ear. They want to talk and they need someone to just listen and say nothing. We can murmur yes, or nod our heads, or we can echo back to them what they just said as an affirmation that we are hearing them (correctly).

One of the most interesting things he wrote about was a simple lesson about listening.  A research study was done in the United States in which untrained people were taught to “counsel” volunteer patients – they were taught to just sit and listen and say “I see.” All of the patients thought that the counselling sessions were excellent, and asked to see their “therapists” for more sessions in the future. The untrained people (just by listening) were viewed by the patients as “therapists,” helpful “therapists,” no less.

Dr. Buckman was making a point – listening is a valuable and worthy strategy when dealing with people who have problems. Well, people with problems would include…all of us! The whole Universe (unless you are Thich Nhat Hanh or the Dalai Lama).

Dr. Buckman’s advice is gold; it’s an alchemy.

Listening is a therapeutic tool because it allows for that sacred space: the space where there is stillness and silence. In that sacred space is where healing takes place and where acceptance lives. It is an energy that is real, and when we most need comfort and support, that healing energy allows us to talk freely, without distraction, without judgment. Listening can transform someone’s pain – just by allowing someone to share their pain and sorrow. When we listen to someone (without giving any advice), we silently transmit a message: I’m here for you; whatever you say, I hear you. And that silent message allows us to connect.

Thanks to Dr. Buckman I learned that I didn’t need to cure/solve/fix my neighbour’s grief.  Nor did I need to advise her – she already had the answer within.

Her first comment to me was that when she felt so sad and overcome with emotion, she just wanted to pull her car over and cry. That’s the answer.

Our hearts and our spirits always push us in the direction that we need to go…that little lesson I know for sure. Her heart was telling her to just cry and let it rip.

Holding on to our emotions is never a healthy coping strategy.  (If you are in a crowded arena with complete strangers,  you might want to hold in your emotional buildup. Like the time I was in a nurse’s office answering questions about my father’s needs on the first day of his entering a long-term care residence – I spotted him on a gurney in the hallway and I let it rip. I was an emotional geyser that blew up. I am sure that I traumatized the admitting nurse.)

No matter our age, losing a parent is a huge milestone in life. And one of the means of allowing ourselves to let go of the grief and sorrow as it wells up within is to…weep.

When we allow the emotions to flow, we show compassion to ourselves. If we feel anger, then acknowledge it. Sit with it. Whatever it is that we are feeling, whether it is sorrow, resentment, or anger – just sit with it and allow it. Do not fight it; or push it away; or ignore it; or look for distractions. Sooner or later our feelings need to vent. The beauty of this technique is it is so simple; no editing, no revising is necessary.

We need to allow our feelings, a voice. Sit with them and accept them and in time answers will arise and we will figure out why we are angry or resentful. And we will learn to let go. But first, there must be awareness.

We are human. And humans feel.

Pull the car over to the side of the road and just cry.

Trust me on this…you’ll feel better.

 

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

 

 

 

 

 

Whose “reality” matters?

My mom was convinced that the new resident was an actor from her favourite television show Coronation Street, a popular British soap that many Canadians watch faithfully.

Even though the new resident didn’t have any similarities to the actor, she was insistent, “It’s him. He lives down my street.” Down the street was her term for the hallway.

Misunderstandings, misinterpretations, hallucinations, delusions and altered perceptions are all symptoms of Alzheimer’s disease and of other dementia-related diseases. Unfortunately, altered perception is also one of the most misunderstood symptoms that families of a person with a dementia-related disease struggle with when their loved one is ill.

My own family floundered with our mother’s perceptions and hallucinations nearly every day. I learned that we were not alone: Many persons with Alzheimer’s suffer greatly from this symptom of brain disease.

In fact, since I have been volunteering at the long-term residence where my mother lived (she died last December), I have discovered that many of the residents are affected by both delusions and altered perceptions – even those who do not seem to have any other symptoms of dementia.

I have learned that a seemingly lucid person can suddenly demand to be taken back to her room because her daughter has arrived for a visit…when I look around, there is no daughter. In fact, sometimes, I turn around in a complete circle…There is no one here! Just me.

Other times I have been in the middle of a conversation with a resident and suddenly that person will look up and insist that “the children have arrived.” You guessed it: There are no children.

My friend’s mother often had an animal friend that slept in her room. She would ask my friend to pat the animal, speak to the animal, and, of course, feed the animal – which my friend lovingly obliged her. So she fed it, patted it, and spoke to it often; imaginary food, of course.

When we go along with the hallucinations and altered perceptions, we are not harming our loved one’s reality. Their altered perception is their reality. When we argue or attempt to correct our loved one, we cause further harm and suffering. Worse, we hurt their pride – their sense of self-worth.  (We need to understand that people with Alzheimer’s still understand disrespect and intolerance from someone…they just do not process that negative energy the same way as someone with a non-damaged brain.)

So how should we respond when our loved one tells us that the boys are in the trees? (That was a common refrain of my mother’s. “What kind of parent allows their children to climb those tall trees?”)

First, I think it is important to understand why our loved one is seeing things! Compassion comes from our understanding another person’s viewpoint. And it is in compassion that we can lovingly adapt to or manage our loved one’s symptoms.

Hallucinations are not necessarily hallucinations; in fact, our loved one might be experiencing visuoperceptual difficulties. Many people who have a dementia-related disease have damage to the visual system; therefore, they have visual problems. Visual mistakes are often made since the patient’s disease (the deterioration of brain cells) prevents them from seeing an item and then interpreting it correctly (and many times they do not name it correctly because of their language deficiencies).  Hallucinations do occur, of course.

As caregivers, we can begin to discern or differentiate between misperceptions and visual mistakes that our loved one makes and hallucinations.

For instance, when my mother was alive she made many remarks that were quite outrageous, but when my family learned that her visual system could be damaged because of her loss of brain cells, we took a closer look at what she said: “The boys are in the trees and they have been there all day.”  On closer inspection, the wind was whipping the tree tops and the leaves were moving frantically back and forth. This movement caught my mother’s eye and she mis-perceived the tree and its leaves.  Because of the brain damage from the disease, she no longer could judge or interpret events; hence, she saw boys in the trees. Even though most people who do not have damaged brains would realize that the suggestion was ridiculous, my mother could not make that distinction.

A common mistake our loved ones with dementia make, time and time again, is that they see people in a chair by the bed.  If a house coat or sweater was draped over the chair, or even a comforter or a blanket, that outline of fabric would fool my mother and she would see people. This is a very common mis-interpretation that people with dementia-related diseases make.

Misperceptions and altered reality are two of the many causes that allow for accidents and falls. My mother was constantly underestimating the exact location of the table – she would either place a cup of tea on the table and misjudge the distance;  hence, a spill.  Or, she would sit down onto the toilet and miss it entirely; she would try to climb steps and her foot would hover in the air as she probably could not see the steps clearly. She would trip over the doorway threshold.

There were times when I took my mother into the bathroom and she would catch a glimpse of herself in the mirror and she would stop and refuse to go into the room: “There is another woman using the bathroom, Mal. Who is she?” ( I would reply in a quiet voice, “Mom, perhaps it is you!”) She would pause and then burst out laughing. Notice that I allowed for her to make the adjustment – my way of allowing her some dignity.

These encounters occurred throughout the whole day with my mother. She would absolutely refuse to go into the hallway from her room because she was convinced my Dad was in the hallway with his floozies. My dad had died two years earlier, and no, he did not have floozies (to my knowledge. Ha!). To make a distinction, this was a hallucination, not a misinterpretation. (She was not mis-perceiving people as there were no people or objects to mis-identify in the hallway.)

But along with hallucinations and misconceptions and altered perceptions, there are times when our loved ones insist that someone has stolen something or a personal care worker is now a “thief.” The many times my mother said my father visited her room to raid her closets would be considered a delusion – most delusions focus on infidelity, paranoia of someone, theft, or abandonment.  Unfortunately, delusions are also another common symptom of dementia-related diseases – and since they usually “finger-point” to a family member or a staff member, they can cause hurt and bitterness. With understanding the causes of these symptoms, we can let go of the story and not take them personally.

Then there are the times when residents insist animals are sitting beside them or friends have visited when you know for a fact, no one visited them that particular time.

But since time and space are confused, a meeting that takes place on Monday can be remembered as taking place on Saturday. And, when someone does visit, our loved one insists that they did not!

It’s all very confusing, yes? Yes! And frustrating. Until you accept the symptoms of the disease and just go with the flow. I make it sound so easy and yet I know that it is not. It is a constant challenge to live in the Now, and accept our loved one’s disease. But it is what it is.

We cannot change our loved ones. Only we can change!

As Gandhi said, Be the change that you want to see.

Hallucinations occur more often in people with Lewy Body Disease or Parkinson’s, but clearly Alzheimer’s does present these symptoms.

Here are a few tips that I learned when I cared for my father and my mother:

  • avoid talking or laughing or whispering while near the person with Alzheimer’s – if that does occur, then ensure that you clearly explain to your loved one on the exact nature of the discussion (otherwise, your parent misinterprets or mis-assumes/deludes herself, imagines/perceives a story or complete fabrication)
  • no loud, violent TV (again, our loved one thinks the television story is real)
  • don’t argue in front of the person with Alzheimer’s (this frightens them and they stay frightened long after; some people become quite traumatized)
  • help them look for missing or stolen items – just go with the flow (never insist that they are wrong or imagining that an item is stolen)
  • try to have duplicates of the lost items (for example, an extra wallet, loose coins, another set of keys) when they “lose” something, now you can “find” it
  • do not argue with your loved one over the reality of a situation – in their mind, this is real for them
  • increase the lighting in their rooms (they cannot see well)
  • de-clutter the room (if they live in their own home, de-clutter the entire home)
  • hang clothing in the closets – draped items cause visual problems for them; a coat rack can become “a person”)
  • ditto, pillows and cushions – they are mis-identified often
  • watch the person’s movements and adapt to them – often my mother would stretch out her arm and I recognized that she was going to just drop the cup  (into space). I began to anticipate her moves and I would take the cup from her, or move a table closer to her.
  • say aloud what the item or object is when you hand it to them
  • in the case of mis-identification, learn to identify her visitors  (E.g. “Oh, Mom, here’s Margaret, your best friend. She has come for a visit.”)
  • anticipate that they need support or help when they climb stairs
  • be aware that shiny floors or patterned carpets can completely “dazzle” their eyes or confuse them (take their arm and gently say, “Allow me to help you up the stairs. There is a step in front of you. You will need to lift your right foot.” Or, you might remind them that the floor has transitioned to carpet.)
  • learn to go with the flow and agree gently with them on most occasions (do not argue, cajole, or try to persuade them that they are wrong – you will never win the argument)
  • if they become agitated, stay calm and lean into them – rub their arm or hug them; tell them “This must be difficult for you. I am here for you.”
  • recognize your emotions when your loved one has an altered perception; recognize and accept the emotion – do not suppress it or deny it; learn to accept your emotions as a natural and human reaction to our loved one’s stories (in time, you will let go of the hurt)
  • try to maintain a sense of humour

To recap, objects are visually seen but the impaired brain cells (and damage to the visual system) misinterpret what the objects are. What many of us, as caregivers, have labelled as hallucinations are not; they are visuoperceptual difficulties.

Similarly, the person with a dementia-related disease will misunderstand or misinterpret conversations, even conversations that they overhear. Many a visit with my mother included bizarre re-telling of stories – some had an element of truth in them somewhere, but mostly her stories were based on erroneous facts and misunderstandings.

One time my mother told me that her sergeant insisted that she move to another home.  Nothing we said could allay her fears. Weeks later I learned that the new director of the home had introduced herself to many of the residents. My mother’s impaired judgment led her to believe that the director was the sergeant and that some of the goals stated were misinterpreted to mean changes. Because my mother could not discern fact from fiction she insisted that the sergeant was moving her to another location.

So one can now understand that persons with Alzheimer’s and other dementia-related diseases do not see and interpret things the same way that we do…their brains take in and mis-interpret visual information causing them to misjudge distances, dimensions, depths, colours, items, events, and circumstances.

Once we become aware of this new information, caregivers and family members (and visitors and volunteers) can let go of their fears. Remind yourself: it’s the disease, not them. And learn to go with the flow. Try not to take things (wild stories about your father) personally.

It is completely natural and human for family members (and caregivers) to be fearful of these kinds of symptoms – it is natural that we are shocked when we first hear such accusations and wild stories. We feel sadness and grief. These wild stories or hallucinations trouble us deeply – we are both bewildered and saddened, but we are also totally overwhelmed in how to cope with them.

When they first occur, we reason with our loved ones:  “Now mother, you could not have seen a donkey in the yard…here, let’s go outside and I’ll prove it.” (Yes, early in my journey, I actually tried to reason with her, over a donkey.)

Then, we argue and debate: “Okay, let’s call the neighbours and find out if they saw the donkey.” (Yes, I argued and debated the odds of actually seeing a donkey in the backyard. I lost. My mother reasoned “many farmers have donkeys in their back yard. Who’s to say one of them wandered onto my property.” When I explained that there were no farmers on our residential street, she calmly answered, “Well, you don’t know everything.” Just for the record, there is no retort to that remark.)

Then, we cajole (and blackmail): “Now, look. If you continue to see donkeys, we will have to call the doctor. And you know that you don’t want me to call him, right?” (Thankfully, I did not resort to blackmail, but I have heard many family members say such things to their parents when I visit the long-term care residence.)

When we have more information about these kinds of symptoms, we all learn to accept their actions, and we begin to have more compassion, kindness and understanding for the person who has a dementia.

Besides, what’s the harm in seeing a donkey.

The next time our loved one insists they saw …a donkey, a dog with rabbit ears, a horse in the bedroom, boys in the trees…let’s respond with love and understanding…

“I’m so glad that you have a new pet. I bet he keeps you company when you are feeling lonely. What did you name him?” or just say, “Any animal would be lucky to have you.”

 

 

 

 

 

 

 

 

 

 

 

 

In our sadness, we look for gifts

This week we learned that our friend has received some news from the doctor about his cancer. His cancer has metastasized. We struggle with the news, slowly try to process it.  After a few days I invite our friend’s wife out for lunch in a quiet restaurant to talk (away from home)…I wanted to give her my presence so that she could vent and cry. Two things are important now – talking and listening.

But I have underestimated my friend’s strength and wisdom because as soon as we are seated at a table, to my surprise, she handed me a piece of paper with the following poem. She wasn’t sure who the author was but I Googled it and found a woman’s name, Sue Rogge. (I apologize if I have not credited the correct author.)

We are all born to a world of change,
Though we may never know why.
We grow and learn, despair, rejoice,
Wonder, and laugh, and cry…
And the days fly by.
And some look back with little more
Than regret and a wistful sigh,
Or worry their way toward the future,
Or do their best to deny…
That the days fly by.
Each moment in time is a gift that comes
And goes in the blink of an eye.
We question, as always, the meaning of life,
And “to live” is the only reply.
So let’s celebrate us in the here and now –
May we live as well as life will allow,
And may our spirits be ever high,
So they, too, fly…
As the days fly by.      Sue Rogge

And just so you know, we do talk. And she did vent. And we both shed some tears.

Talking and listening. Both are gifts that we share.