Tag Archives: alzheimer’s disease

Joy. I choose joy.

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

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

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

Joy. It’s transformative.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Advertisements

The 7 A’s of Dementia – Apraxia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your words, not mine; your stories, not mine.

Sunset over Charlottetown HarbourI am watching my resident sleep. I’ve been sitting beside her for fifteen minutes now, and the staff members assure me that she will be awake shortly. She doesn’t usually nap at this hour, they say.

I don’t mind as I am narrating a story in my head – all quiet moments are gifts of time.

The last couple of weekly visits have changed – the routine of greeting my resident, talking for a few minutes to reassure her of the reason for my visit (I am recording and writing down her life stories and memories), turning on the recorder, and prompting her with a few questions to stimulate her life stories has disappeared.

Lately, during our visits I notice that she is either very drowsy or somewhat confused, and conversations about her family, childhood, school antics or young married life have dried up.

I have had to adapt, and I no longer ask her questions or give her prompts. Only a month ago I had inquired about her grandchildren and she had responded with a lovely story.

But not today.

When she awakes, I have to remind her who I am (Gwen’s daughter – you remember Gwen – she lived across the hall and you shared many cups of tea together) and she smiles her beautiful smile, and although I can read on her face that she is happy to see me, I sense that she no longer remembers Gwen (or me).

So I try again. More confusion.

In my cloth bag I have a copy of her life stories to date, so I retrieve the typed pages which are in a plain, three-ring, navy blue binder. I place the binder in front of her on the lap tray of her wheel chair and open it to the front page. I have learned an 8” by 11” binder is easily held by a senior.

She stares at the page for a very long time, and I am leaning over to close the book when she reads aloud her name and the words, “Life Stories.”

She looks at me and grins, and I urge her to turn the page.

She begins to read her very own, unique stories of her past. Unexpectedly, I note that she is a good reader and am thrilled because I didn’t realize that she still possessed the ability to read. My own mother had difficulty reading when her dementia progressed, and eventually she lost the ability completely.

I remember the October before my mother died in December, she signed a birthday card for my sister that I had purchased for her. I asked her if she would like to sign the card herself, or would she like me to sign it. She answered (as I knew she would), I can do it myself. She spent a few minutes gathering her strength to sign the birthday card to my sister, Sue. Then, she scribbled (almost illegibly): Love, Sue, instead of Love, Mom.

I loved that card. Because her intention (love for my sister, Sue) was so beautifully evident.

I draw my attention to my resident: She is reading aloud her stories…she pauses at the funny parts to look at me and remind me, that happened to me, also. I realize that she is not completely aware that these stories are hers! I keep re-assuring her that they are her stories, and that I only transcribed them. I keep repeating: your words, not mine; your stories, not mine.

When she reads aloud, she re-reads many of the passages and so I lean over and begin to turn the pages, but she stops me, and goes back to the top of the original page to re-read the story. After 45 minutes, we have only read two pages. I begin to panic and worry that we will never get to the end of the book at this rate.

But then I see her face. I begin to really see her face and read her energy. In that moment of being present (truly present) I am aware that she is completely entranced in the story – her story! She is smiling and nodding her head, chuckling (oh, yes, her stories are funny) and then I have an aha moment. My resident is in the moment.  Her moment! She is oblivious to the natural bird sounds outside her window; she is oblivious to the staff who are talking, and pushing carts in the hallway – the noises of life in a long-term care home are a muted constant 24/7.

My resident is in the moment. Time has ceased. Her face tells me that she is a young child again, living a life of scarcity and hardship, but filled with family love, laughter, and richness.

One thing I have learned when transcribing life stories of the residents is that our memories evolve: they don’t change completely, but we, as humans, re-paint them. We brush over the memories that hurt us, or caused us pain. I, too, find that over the years, my hurts and disappointments have been watered down – I have lifted out the colours that no longer serve me.

Like others before her, my resident’s stories have been blended with other experiences and the passage of time, and now understanding and forgiveness is the rich palette that remains. Through the lens of our journey we perceive our parents’ weaknesses, as strengths; their mistakes, as lessons. A gruff father who never spoke of emotions (or feelings) to his daughters becomes the ninety-year old man with Alzheimer’s who never speaks, but utters, I love you to both his daughters whenever they leave the room.

Through him, I learned that disease, dying, and death are powerful teachers. Forgiveness, reconciliation, love and peace are potent change agents. They transform our stories – blending, layering, pulling out colour, until bleeding the stories into one.

Through the process of reminiscing we begin to connect the dots starting with the point of origin to the last dot You Are Here.

These are the insights I have gathered, and these are similar to ones that I hear time and time again from the residents who I sit with. In the telling of our stories, the bad bits get left out and the good bits grow, and we are left with a richness that we had never seen before – colour laid upon colour. A richness that inspires gratitude.

When a resident comes to the end of her life story, I often hear:  I’ve had a good life. Those were wonderful days and I feel lucky to have lived them. I’ve had a good life and I am at peace. I am ready for my final journey. I am content.

Still reading the first few pages after an hour, I eventually tell my resident that I have to leave, and I know that she is disappointed but she closes her book as I promise to leave the binder with her. Yes, I still have lots to read, she informs me, and she adds, it’s a good story.

My intuition tells me that the time has come to end our weekly sessions – she no longer has new stories to tell me. I believe her stories are still there in the recesses of her mind, but they are not accessible as they once were. Like a locked filing cabinet, I no longer hold the key to open it.

When I leave, she grabs my hand and closes her other hand around mine and gently strokes it. Thank you, she whispers. Please visit me again.

I will, I promise.

As I walk through the hallways of the long-term care home, I am reminded once again that the only thing that really matters is our presence. As humans, we all want to know that we matter – that our lives are spent well – whether we are young or old; healthy or not.

And I am reminded that gratitude, above all else, matters, too.

 

 

 

 

 

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.

P1060369

 

 

 

 

 

 

 

 

 

“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.