Tag Archives: caring for parents

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Acceptance is a choice.

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

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

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

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

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

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

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

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

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

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

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

 

 

Caregiving and Mindfulness: Gifts

overnight, autumn crocus appears

overnight, autumn crocus appeared

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why do I feel this resentment?

Why am I so angry?

Why do I feel guilty?

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

Allow yourself to just sit with whatever arises.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Gifts; all gifts.

 

 

 

A new dawn; a new sunset – book-ends

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sun rise on the way to London

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

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

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

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

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

The shed that Dad built

The shed that Dad built

harbour-bay-bell

harbor bay bell

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

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

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

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

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

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

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

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

Thoughts are transitory; impermanent; illusions.

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

Tonight. Tomorrow morning. Tomorrow evening.

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

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

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

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

The library in my mind is ever-changing.

Sunrise, sunset. Bookends. Gifts.

sunset at Canatara

sunset at Canatara

 

Why continue to blog?

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

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

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

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

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

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

I know this without any doubt.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

 

 

 

 

 

 

 

 

 

Sharing time with someone who has Alzheimer’s

Often family members visit a loved one with a dementia-related disease for weekly, bi-weekly or monthly visits. Some visit more than once or twice a week, but these same family members will tell me that they find it a challenge finding an activity that they can share. I remind them that it is not the activity, itself, but the time shared together that matters. Our loved one is still worthy; our loved one still matters.

Restlessness or anxiety is a common trait of persons who have Alzheimer’s or another dementia-related disease. Because exhausted caregivers are often too worn out to create new activities to distract their loved ones they often resort to turning on the television. Those of us who have cared for someone quickly realize that the television is not the answer. Unfortunately we learn through trial and error that the television programs can spark other symptoms, such as hallucinations or illusions. Worse, delusions.

Others, when faced with a loved one who has Alzheimer’s, begin to withdraw – they no longer visit their loved one because it has become too stressful. They convince themselves that the person with Alzheimer’s (or a dementia-related disease) is no longer cognitively aware; therefore, they reason why visit?

Since I have journeyed with both my father and my mother who had Alzheimer’s, I fully understand how these feelings and thoughts arise. But I have also experienced acceptance of the disease, and with acceptance, kindness, compassion and love follow.

Spending time with your loved one is one of the best ways to learn to accept this disease. Try to visit with the intention of “seeing” your loved one as she/he is in the present moment. Let go of the past (and your thoughts about how shitty this disease is, how your loved one is no longer the person that she/he once was, how much you resent or feel guilt) and just visit with this intention: I am doing the best that I can.  Let go of thoughts about the future (what will happen when she/he dies, how much longer will this go on, what will happen to my health if I continue down this road). Stay in the present.

Acceptance takes practice. One must have awareness first of our emotions. Don’t shove them down. Accept them. And forgive yourself for them. It is human to feel resentment, anger or guilt when dealing with disease. (Thank you, Dr. Robert Buckman, I Don’t Know What To Say…, for this valuable insight.)

Once we acknowledge this fact – that it is human to feel negative emotions – then we can turn our attention to releasing them. Wherever we turn our attention (awareness), energy follows.

When I used to visit my mother in the long-term care facility where she lived the last two and a half years, I parked the car and sat for a few minutes. I would close my eyes and intend that my visit would go well and that I would only bring my loving energy into her room; I parked the negative energy in the car.

Here is my intention (or prayer):

Let me only enter with love. Let me greet my mother with love, compassion and joy. No matter her mood or the events that she will tell me, I will stay in a state of acceptance. I am not here to cure her or fix her. I will visit and do the best that I can. And I accept that. No matter what, she is here. I accept that, too.

Through my own experiences and through talking with others, I have compiled a list of activities or tips to help distract a person whose symptoms are causing restlessness, anxiety, frustration, agitation or irritability. None of these suggestions will work all of the time; some of them work for a short period of time and then other activities need to be introduced. Sometimes we adapt or tweak an activity and that makes all the difference.

And sometimes an activity is not the answer to restlessness, but that stillness or calmness is. Learn to declutter and simplify your loved one’s surroundings. Over-stimulation, whether it is a messy room or too many people chattering, can arouse anxiety in someone with a dementia. And some carers believe that over-stimulation and change can cause Sundowners Syndrome.

When someone becomes restless or anxious, distraction can be an antidote. Often I would take my mother’s hand and suggest that we look through her photo albums or rummage through a box filled with family photos. This was an activity that she particularly loved to do and if I sat beside her and listened to her stories, that was double the pleasure. (Tip: no matter what story you hear, do not correct their version)

When the experts tell us that the part of the brain that stores old memories is often one of the last to deteriorate and that those memories often stay intact until near the end stage of Alzheimer’s, we can understand why our loved ones enjoy visiting the past – old family photos, reminiscing about old stories, old home movies, music and songs from their childhood or young adult life (or songs from the war) – these all make for an enjoyable pastime. And I am convinced that these activities allow for our loved ones with dementia to shine again.  On a daily basis they are bombarded with things that they no longer can remember how to do and reminders of loss and failure; therefore, why not give our loved ones an opportunity to remember happier days – days when they were full of life and passion, days when they were not dependent on others. Reminiscing about the past, listening to your loved one’s stories, and looking at old photographs fill a vital need.

Finding activities or hobbies that suit the person with a dementia is not a one-size-fits-all solution. A little detective work might help, as you might want to explore a variety of activities.

For example, your loved one might have enjoyed photography as a life-time hobby. Understandably, he might not be able to remember how the camera works, and his lack (loss) of fine motor skills might impede how he holds the camera and focuses on a subject. But the person might still enjoy photography books; or a small camera, or two, could be placed in a box as a worthwhile activity – a caregiver could initiate a conversation about photography with the person, as he holds the camera and  touches the different components.

My mother was a clean freak when she was younger and we teased her that her laundry was folded as if she was still in the army. Well, those habits did not fail her when she became an older woman with Alzheimer’s. Personal care workers would tell us that my mother would make her  own bed every morning, and that the bed would be wrinkle-free and perfect. (And yet she could not walk without two people supporting her. Figure that.)

When the laundry was returned to her room, I would take everything off the hangers and give them to my mother to re-fold. She would concentrate on folding a sweater and even if it took her many minutes, she would not give up. When I would lean in to help her, she would insist that it was her job, not mine. I could do it quicker and neater, but it allowed my mother dignity and purpose and it became an activity that she enjoyed during my visits.

Another activity she liked was to sit with her jewellery box on the bed where she would lovingly handle each of the pieces of costume jewellery. She would pick up a piece and tell me its story. “You gave me this necklace one Christmas when you were ten years old. You told me it was the most beautiful thing ever.” I would stare at the yellow beads,  and wonder if she was confused with my sister’s or aunt’s gifts. I could not remember buying it, nor did I even like it. Yellow is not my favourite colour. But I enjoyed watching her face light up with joy as she remembered these stories. And I especially enjoyed her stories. (Sometimes she got her stories mixed up and the decades ran into each other.)

We might read stories or poetry to someone with a dementia, or we might play music from the early eras. Reading aloud or listening to music is extremely calming and tranquil. Studies have shown both are used in therapy and have good results. Again, music from the past awakens the part of the brain that is not as damaged as others…it becomes a pleasurable and joyful experience for persons with dementia, and, of course, it is extremely restful. This is particularly a good idea for grandchildren who visit. Young people can read their favourite books or magazines to their grandparent. (Remember: it’s about the energy we create, not the content of the pages.)

My friend visits her mother who has Alzheimer’s and sadly,  her mother does not recognize her, but they still enjoy hours of singing songs together, and spending time together, holding hands.  Christmas carols and hymns are special favorites, she tells me. When my friend recounts her visits, I can see the joy on my friend’s face. She has truly parked all those emotions, including her sorrow now that her mother does not recognize her; yet she visits as often as she can, with love in her heart.

There was a large cork bulletin board in my mother’s room at the long-term care facility, and we pinned all of the greeting cards that she received onto it. When she became too anxious or upset, I would announce to her that it was time to re-arrange her bulletin board. Then I would take everything off the board, lay the items on her bed, and she would look at each card or token (butterflies, autumn leaves, pictures) carefully. I would ask her where we might re-pin the cards on the board. According to her, everything should be hung low on the board so that she could look at them when she was in her wheelchair. (So clever, I would think.) Sometimes I would visit and she had taken everything off the cork board and I would find them in the trash can by her bed. Not saying a word, I would re-hang them when she wasn’t looking. She never commented on my actions.

Often I encourage family members and friends to mail cards to our loved ones who are in a long-term care facility (or hospital).  Many of the residents that I visit do not have a single card, plant, vase, picture, or special gift in their rooms. (Their rooms look bare and lonely.) When we mail a card once a month to someone who we cannot visit as often as we wish, we are giving them a true gift – a chance to receive mail, an opportunity to “show off” the card, and a gift of ourselves to them. In this simple act, we express consideration and support (and comfort) to our loved ones. A small expression gives huge joy. When we care for persons with dementia, we learn very quickly that the smallest of gestures are meaningful and matter the most. (Here’s a tip: choose greeting cards with beautiful pictures on the front such as animals, nature, butterflies, or flowers and add a handwritten note. “I love you and think of you every day. Thank you for everything that you did for me when I was a child.”)

Think of activities that our loved ones enjoyed when they were healthier and then tweak that activity to fit their level of ability. Someone who liked to make crafts in the past, might enjoy a box of different kinds of fabrics, buttons, and zippers. Different on-line sites sell quilts made with zippers, pockets and buttons and bows – called a fidget quilt – while others offer craft projects adapted to someone who has Alzheimer’s. This is a wonderful idea for those who enjoyed crafts, or for the person whose hands fidget and are in constant motion. (Each person with a dementia will be at a different stage of loss – some will not be able to use their hands due to loss of fine motor skills. And, of course, some will have forgotten how to tie a bow, fasten a button, etc.)

Some people with Alzheimer’s may not actually want to do the activity – but will enjoy sitting and watching their loved one participate. My mother no longer gardened but liked to watch the staff plant vegetables and flowers in the communal gardens.

Some people have dolls that can be dressed; some persons with dementia like to do puzzles (there are many puzzles that are adapted to Alzheimer’s and dementia); some will respond to a box of tools or a box of kitchen gadgets (for those who loved to cook). And many persons with a dementia love to draw or paint. When I visit the care facility, I am always astounded at the beauty of many of the paintings that are hung in the hallways – the subjects are often simple, but beautifully crafted: a simple maple tree, a vibrant red cardinal or a vase of flowers.

Finding the activity just takes a little detective work on the carer’s part. And sometimes our loved ones will tell us in their own way – my mother spent every day sorting through her dresser drawers, re-arranging things constantly. We learned that it calmed her and we stopped trying to re-order her items. Once I found mince tarts in her lingerie drawer and pieces of chocolate – all melted and a complete mess. We learned not to sweat the small stuff and just to remove the mince tarts and chocolate. (Tip: add some small boxes or plastic containers to the drawers so that your loved one can fill them with items of their own choosing.)

Lastly, I learned that sitting outdoors in the garden with my mother gave her immense pleasure. We would sit for a couple of hours, listening to the birdsong and watching the birds at the many feeders located in the garden. Squirrels would visit and the occasional rabbit family would grace us with their presence.

On a few occasions, my mother would comment on a trip that she made when she was a young woman, confusing the present day with her past. Instead of sitting with her daughter in the garden, she was sitting with her friend in the courtyard of the hotel where they stayed. At first I was confused about her stories, but I learned to just go with the flow – and stay in the Now. That is, my Now; not hers. Either  her past or my present, we both were content to sit in the garden in stillness and peace.

Those were the happiest times when we just sat in silence and stillness. I would forget that my mother had a dementia and lived in a long-term care facility. I just sat in the moment, enjoying the Now.

It’s really not about the activity or how we spend time with someone, it’s about the loving energy when we sit with them. If we visit with an open heart, and we are willing to leave our egos aside, our visit will matter – to our loved one and to us.