Your mother probably has Alzheimer’s or a dementia-related disease. There is nothing that we can do for her. She has broken her hip and her wrist and after her bones have healed, we suggest that she cannot live alone. You should put her name on the list for an opening at a long-term care facility. You are probably looking at a wait up to two years. In the meantime, she will stay in the hospital.
Words that sounded familiar – an echo of a similar conversation that we had when my father fell on the stairs and an ambulance took him to the emergency department of the nearest hospital. At that time, 3 years before my mother fell also, my dad lived at home and my mother, sister and I cared for him. He was not diagnosed with Alzheimer’s but we knew that he had the symptoms; my mother refused to take him to the physician to be assessed. She denied that he had a dementia-related disease.
But after my father died, I knew in my heart that my mother was showing many signs of dementia, herself. My dad’s death had transformed me – love, compassion, kindness and other lessons from my journey of caring for him – and so I was able to accept my mother’s illness more readily, without the burden of guilt, resentment, anger and denial. Those were emotions that travelled with me when I cared for my father. I lived in a world of bewilderment and hurt during that journey.
When my mother had to go to a long-term care facility, we faced the difficult decision with an open heart and we accepted the reality. We did not fight it as we had when my father was ill. We accepted that we had nothing left over after his death; we had little time to refill or replenish ourselves. The well was empty. And we cannot look after someone else when we are not whole ourselves. That is a lesson that still resonates with me today.
There is nothing that hurts us or our loved one more than our non-acceptance of a diagnosis or prognosis. Nothing.
I have learned when we accept the reality of the illness (and what it means in the future) fully and completely, we open up our hearts and our minds to living today, and not wallowing in death and dying.
There is a world of difference, my friends. When we do not accept that our loved one is ill (that he has a dementia-related disease) we live in denial and that leads to a myriad of emotions, none of them loving or compassionate. Hurt, suffering, pain, sorrow, resentment, anger…all of these emotions arise (and it is natural for them to arise) but we cannot let go of them when we live in denial.
And in the process we begin to hurt our loved one. Our sorrow or hurt spills over and touches them. They will feel our energy – an energy of a stewing pot of negativity; not one of love and compassion.
Our loved one will feel ashamed and full of self-blame. He will begin to constrict and instead of being open and sharing his emotions and fears, he will do the opposite – he will keep them close; he will hide them. In our non-acceptance of the disease, and in our anger that our loved one is losing his cognitive abilities, we close the door to an open and loving connection.
When I learned to accept that my mother, too, had a dementia-related disease, I vowed that now that I knew better, I must do better (Maya Angelo) and so I let go of my fears and tried to live in the Now. I vowed to visit her often (between my sister and I we visited her daily as we rotated visits – three days one week, four days the next) but never walk into her room with negativity. I left those doubts and fears in the parked car. When I visited, I went with no expectations, no hidden agendas. Just love and compassion. Whatever greeted me as I entered her room, I accepted.
Sometimes we sat outside in the garden and listened to the birds, and other times we sat in the activity room listening to music, or attending the music therapy sessions. We sang hymns together and laughed with the other residents.
When I cared for my father, there was not a lot of laughter or singing in our home. We carried his illness around and rarely laid it aside – we were sad and I often found myself crying in the bathroom, when I found five minutes to finally be alone.
I look back on those days with regret that I did not accept his illness – all those days wasted in fear! If I only had learned to accept my reality, instead of resisting it every day.
But I have come to a peace about that time. In retrospect, I realize those days made me who I am today. The lessons (I call them gifts) from my journey have transformed me.
My compassion that grew during those days and after have allowed me to live a life of joy in living in the present moment; finding solace and comfort within at any time; living in mindfulness each day; finding my true self. I have learned compassion for others and for myself. That compassion has led to less judgment and more acceptance of others and for myself.
I have accepted that I am imperfect. I have accepted that when we look after a loved one who is ill, we will find peace when we accept the moment as it is. Sometimes that will mean sadness and grief layered upon regret that time is running out. We accept that, too.
The peace comes when we accept the truth of the Now – the reality of the present moment. We suffer when we look away or deny the reality. Or if we try to take control or manage the Now. We cannot control illness – we cannot change the prognosis. No matter how much we love someone, we cannot cure them. (Let that thought go.)
But we can change the energy that surrounds us. We can control our thoughts.
Our loved one who is ill wants only one thing from us – he wants our acceptance of him as he is right now, even ill. He wants to talk about his fears; he wants us to let him know that we will walk this journey beside him; that we have his back.
He wants to know that he still matters. When we sit beside him, when we listen, when we laugh with him, when we share the present moments (watching a sunset together, listening to a choir or a guitarist, hearing the birdsong, reading aloud, sharing a cuppa) …this is how we allow him to know that he still matters to us!
Just listen. Let him express his fears and frustrations. We are not here to cure our loved one. We are here for one reason only: to love.
Love has another name: Acceptance.
Let us not shy away from the gravity of a diagnosis or prognosis – but let us lean into it. Let us express to our loved one (in our words and in our actions), You are loved. I am here for you. I have your back. We will walk this journey together. You matter to me. You are not alone. Let’s enjoy the present moment…together.