Monthly Archives: March 2015

Caregiving is a gift

snowdrops always return in the early days of spring

snowdrops always return in the early days of spring

Winter doesn’t last forever.

Since I am still wearing a cast for a broken wrist, I have decided to add an excerpt from my ebook that is offered free on my site, The Gifts That We Share: Caring for my parents with Alzheimer’s –

Excerpt:

Like many others who look after a loved one, I am neither a nurse, nor am I a personal support worker. I have no experience in any of the professions of “caring” for patients in any way. My sister, my mother (in her 80’s at the time) and I cared for my father when he exhibited signs of dementia (later, a physician in the emergency ward told us that it was probably Alzheimer’s disease – my father, and my mother who was Power Of Attorney at the time, refused to allow us to take my father to a physician). In the last few months of my father’s illness, my mother began to have hallucinations and exhibit paranoia and when my father died, we had barely returned home from the funeral when my mother showed further signs of a dementia, too.

Because my experience looking after my father was too heartbreaking to face again, I became determined to do it differently. Since I felt I hadn’t done a spectacular job the first time around – I was worn out most of the time – I decided that there must be a better way. There is. The journey is still challenging and wrought with sadness and grief, but it’s also one of understanding and acceptance; and for me, that has made a world of difference.

My sister laughed when I told her that I was going to write about our experience of caring for both our parents – she worried that it wasn’t very healthy to want to re-live a painful experience. I disagree.

What I do know is that something inside me keeps telling me to do this. And one thing I have learned is that I must listen to my inner voice.

My inner voice is the gift that I received (or found) after my father died and my mother became ill. It is not the only gift that I received; I received many others and continue to do so. But the greatest gift that I received is my inner voice became more vocal. And since I believe that we all have a spirit, I now know that my inner voice is really just another word for spirit or my soul.

Caregiving is a unique and profound experience – an awakening; an awakening or realization that we are all here on earth to look after each other as we are all connected. Some of us learn the lessons and are open to the “gifts;” while others do not learn the lessons and do not understand why I would call the experience – a gift.

Since I have opened my heart and my mind, I have discovered and heard new stories of love and kindness and how they transform our lives, each and every day. When you are on “high alert” for new experiences, they fall into your lap! In fact, my mother’s hospital roommate was in her room for only a few hours, when the roommate’s daughter told me a beautiful story that resonated with me. Since her mother had become ill with dementia, various family members would crawl into the bed with her mother and snuggle up beside her until she fell asleep. On one of these occasions the granddaughter said to her grandmother while lying beside her, “Grandma, do you know who I am?” My mother’s roommate answered, “No, I don’t know you. But I can feel the love.”

This ebook is written for those of you who want to learn the lessons and be open to a new form of communication or connection with your parent – a deeper, more profound way of communicating in understanding the behaviours, because the behaviours of a person with Alzheimer’s becomes the “new language” – that is how the person communicates now. If you want to learn the “new language,” you will need to interpret the behaviours and learn to “read” your loved one.

If you intend to communicate or continue to “connect” with your loved one, you will need to open your mind and your heart; we absorb our most profound and transforming lessons when we are open.

Allow me to warn you that caring for a loved one will change your life!

When I read Bolte Taylor’s book, My Stroke of Insight: A Brain Scientist’s Personal Journey (2006, Penguin Group) I was inspired by the author’s description of personal energy. She spoke often of how a visitor, or attending physician or nurse, would either bring their positive (and sometimes kind and loving) energy into her hospital room, or that at other times they would bring their negative energy and how it would “suck” her energy and leave her listless and fatigued. Her story roused questions in my mind about patients and their needs and led me to wonder…

What if a person with Alzheimer’s can understand people, but intuitively, not intellectually? What if a person with Alzheimer’s can hear you and want to say things but cannot? What if we sat down with our family member who has Alzheimer’s and looked into their eyes and said words of comfort, “Please don’t be afraid. You are not alone. We will go through this journey together. I will ensure that we take time to understand each other. This isn’t the end of the world…but it is now a different world.”?

What if we followed the theme of the movie Avatar and we embraced the words and what those words mean…”I see you.”? (If you haven’t seen the movie, the words “I see you” are used as a greeting; metaphorically and literally, a person sees or understands in a physical and spiritual sense who the other person is.)

What if our words and acts of understanding could transform the disease from one of fear and loss into a journey of “connection” with our loved one – who is no longer in the world of sense and reason, but who has entered into a new realm of sensitivity and emotion? Now that’s a radical thought! Or, is it?

Lastly, when I owned my children’s clothing store in my past life (before looking after parents) I often would re-iterate to my staff – “Whenever a customer is unhappy, just look them in the eye and say sincerely “What can I do to make things right?” Now I believe that similar words can soothe someone who has Alzheimer’s. Because most of the time, I have learned that our customers did not want the moon, they only wanted to be heard. They wanted to know that we understood that they were not happy; that they wanted us to validate their feelings. And, I believe that the person with Alzheimer’s wants the same thing. It’s what we all want – validation – to know that we matter.

Take time to stop the busyness of your life, take time to be in the stillness of that moment – “Dad, you matter to me…whatever it is that you need or want, we will help you as much as we can. All is well.”

You will see the frustration drop. You will notice the person’s body will relax and lose its rigidity.

We want to know that we matter still. Our loved ones, our parents, our husbands and wives – all of them just want to know that there is still a joyful life ahead. You can make that happen – and that’s why caregiving is a gift. It’s a gift to them and it’s a gift you give yourself.

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‘Sit. Stay. Heal.’ Pema Chodron

Sit. Stay. Heal.    Pema Chodron

Our meditation teacher once told us that we can all learn a lot from dogs when it comes to living a life of joy – which comes from living in the present.

Observe them. Dogs eat when they are hungry, drink when thirsty, nap when tired, stretch when they awake, and play when they are frisky. In other words, dogs live in the moment.

In Pema Chodron’s book Taking the Leap: Freeing Ourselves from Old Habits and Fears, the American Tibetan Buddhist nun, speaks of living in the moment, finding stillness within, and healing our wounds. Healing is the way to finding ourselves and most importantly, loving ourselves.

Pema tells a story about her friend who gave her a gift – a chain that holds a dog tag that is inscribed: SIT. STAY. HEAL.

The gift is a reminder that to be whole, first we must sit still and feel or experience our emotions or unease.

I am reminded of our beloved pets, dogs – they always are whole (and so full of love).

A few days ago I fell on some black ice…I am typing this with one finger. I am truly in the moment because it is taking all of my concentration to hit the correct keys.

Since my injury I am meditating more (on wellness and acceptance and gratitude) and I am present more. One needs to be fully present to dress, bathe, and even to turn a page of a book. (Which is why Kobos and Kindles were invented!)

I’m not one to sit too long without a purpose…so I am fairly certain that the next six weeks of healing  are going to be a gift – to me.

If I become more comfortable sitting still, I will be grateful for that alone.

And if the only thing I learn is how to type faster with one finger – well, that, too, is okay.

It’s all good.

“It matters not what you look at, But what you see.” Henry David Thoreau

Blue sea shell

Blue sea shell

It matters not what you look at
But what you see.       Henry David Thoreau

Colour over the eye; colour under the eye; mask around the eye; colour under the throat, under and over the bill; wing bar – primaries and secondaries; colour on the rump, flank, belly, and on the mantle. And then there’s a long list of the tail’s details: primaries, secondaries, and tertials.  Colour, size, habitat, sound, and movement – beginner notes.

Whew! When I asked for binoculars so that I could watch the birds in my yard, and while on vacation, I really had no idea about bird watching. I pretty much thought I’d sit in a deck chair and just stare into the trees. So when my sister gave me a how-to book for beginners, I was a little overwhelmed. Who knew that I was supposed to distinguish the different species by identifying a multitude of characteristics or field marks? (And, of course, the little creature has to cooperate and stay still long enough that I can observe the many details.)

But after only a year of practising my newly found hobby, I have learned the secret key, the number one ingredient to successful bird-watching – drum roll, please – one has to pay attention. Mindfulness is really the key to the enjoyment of watching birds. (Whether I identify them, or not.)

From my own experience over the last few years when I began to pursue mindfulness as a daily practice, I have discovered that in focusing on the micro, that is the small, finer details, or parts of a whole – a totally new world has opened up. I suspect many creative people, including painters and artisans, discovered this little secret a long time ago.

By narrowing my focus, or zooming in, I’ve learned to identify some birds and more importantly, I’ve learned not to make assumptions and mis-identify them.

I think the idea of attending to the finer details is exciting – at this moment I am looking outside my window and observing the bare branches of the trees at the back of my yard. Oddly, the tangled bare branches remind me of pictures of brain cells (under the microscope) when plaques and tangles have caused Alzheimer’s disease. That comparison is macabre, I know, but since both my parents had Alzheimer’s disease, I have spent a lot of time on the Web, viewing pictures of brains.

But with binoculars, I adjust the lens and zoom in and now I observe …tiny pink buds at each end of the branches. Pink buds! That’s a mini-miracle this minus Celsius winter day.

Whether I am staring at the beauty of nature, or I am surrounded by people in the workplace, or at a long-term care facility visiting residents, I am always cognizant that in mindfulness, we see deeper and fuller.

Just by focusing on someone or something (by adjusting our internal telescopic lens), we can open ourselves to more possibilities and we can expand our experiences. We can live fuller and richer lives.

I believe that mindfulness, staying present in the moment, is the gateway to acceptance and peace within. And the practice makes for a firm grounding.
When I practice paying attention to people on a deeper level (rather than just glancing at what’s easily visible or at the whole), I find that’s when I can really connect with someone.

When I cared for my father, I did not practice mindfulness. In fact, most of the time I was in my own little world in my head. I was sad most of the time; depressed sometimes. And I was angry every day that my father was changing; little by little he became a shadow of the man that he was. I resented the disease; I hated the disease.

The few times that I was really at peace was when I sat with him by his bedside – sometimes, I would just talk to him and sometimes, I would read to him. And often, I would just sit in silence. Those were the times that I remember that I was in acceptance, and therefore, in peace. Most of the other times, I was not.

That challenging journey has taught me many lessons and I used all of those lessons to be a better caregiver for my mother. I was present for her and that made all the difference in the world.

Now I have learned to recognize and acknowledge the “triggers” that cause stress in my body – recognition is step one. Step two is taking a few deep breaths and allowing myself some time (or space) to change my initial response…which is usually stress with a capital “S.”

When I begin to pay attention to my body’s reaction to other people’s comments or actions, I can begin to change my own energy. It was a powerful strategy when I was with my mother who had Alzheimer’s. Her lack of control over her own thoughts and her actions (simply put – her life!), led her to fight back often when I was with her. It became vital to transform my energy first, so that I could slowly influence her energy. When you sit in silence with someone, even though they are raging at you, slowly, slowly, their energy changes – and they become quieter and watchful of you.  Then, in silence, she would look (really look) at my face and feel the love.

In retrospect, I realize that mindfulness and paying attention to the present moment allowed me to accept my reality that my mother had a dementia and that she was more dependent on me, than I on her. I learned to accept that. And I learned to be at peace with it. But I had to let go of the negative energy, first.

My sister and I visited my mother daily when she was in a long-term care facility and I vowed from the beginning that I would never visit her with negative energy. I am so grateful and thankful (that with the Grace of God) I was able to do that.

In her last two years, I was able to pay attention to her and her needs, and I was able to take care of my own needs (because if we do not look after ourselves, we cannot look after another). It really was a life-changing lesson because when we begin to really look after our own body, mind and spirit, we begin to really love ourselves. We are a gift! (with a capital G).

  • It is in awareness that we can discern someone’s distress or pain – and that leads to compassion for that person.
  • It is in awareness that we are able to discern where and when we can help and support someone – that leads to kindness.
  • And it is in awareness that we are able to discern the beauty and the true essence of another, and that leads to joy and a connection.

For me, it always begins with mindfulness, awareness or just paying attention. Such simple steps: Focus. Zoom in. Observe. Connect.