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?