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 –
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.