A blog about my adventures as a grief warrior

Tag: #braincancer

Are You Prepared?

We have been visiting our friend in hospice for a month or so now. Everyone is aware that treatment of his brain cancer has stopped.  There is nothing else that can be done. We listen as the doctors tell us what the next stages will look like and to be prepared. Be prepared? How does one truly do that?

Each morning begins with a trip to visit him. He smiles, we chat, he tells us he loves us. We say it back. The conversations are light, about a morning walk he had (in his mind as we know he has not left the room).  We read to him the daily verse of ‘the big book’ of A.A and we analyze that. He continues to inspire us, coach us as he lays there talking about life, about how he wishes to live.  “…And then some,” he says.  

Ice cream, diet coke and tapioca pudding.  These are some of his favorite things. As we sit one morning watching him eat a drumstick of chocolate and peanuts, he says, “when I don’t want to eat ice cream, you can start to worry about me.” We laugh.

One visit I asked if he felt his prayers were heard. He said most of them. I asked what do you do about the ones that are not answered? He said, “I pray harder.” I hugged him before I left and noticed the color of his eyes, the new way he was breathing. I leaned in close to his face and said, “I’ll see you tomorrow, right?” He nodded. I asked, “can you let me know when I won’t be able to?” He looked at me, silent, then he squeezed my hand and whispered, “I’ll try.”

Things have started to really change now.  His desire to sit up, to walk, to chat for longer than ten minutes has vanished. “I had a long walk this morning, I need to just rest now” he would say as he closed his eyes.  Our cue to leave. Visits are still daily, but now we find him sleeping and he falls back to sleep as we chat. I think on some level, our friend is trying to prepare. Silently, I am sure his talks with God and the realization he stays dormant weighs on his mind. These thoughts take space with his tumor. There is an irony to all this; staying mentally positive so that you may live while the reason you are dying is found in the same organ.

Who knows when your last breath will be. But we know it is sooner than later for our sweet friend. His son calls to share his visit, how hard it is on him to see his father like this. He asks if we are aware his father is not here for long. Yes, we know. We talked about how he feels about that. He believes he is comfortable with what has been said. We have all shared memories and thoughts and endearments of how important he is to us now and forever. We have prepared ourselves for the inevitable. There’s that word again. Prepared.

When grief arrives, it rips you apart and ‘prepared’ crumbles into a million tears and questions about was it enough. I don’t know how to prevent this.  I just know it happens. My heart aches for his children, his siblings, his friends, for us. His son says he knows one cannot be fully prepared, but he will find strength in knowing his father is not in any pain.  I smile. It is that small but comforting truth to which we will cling to. It might help us to be prepared for the moment that anticipatory grief becomes eternal heartache.

Savoring Tiny Moments of Clarity

This week has been nothing I had written in my calendar to be. It all changed when I answered the phone to hear the frantic voice of my friend’s son. “Dad went for a walk and got lost. We can’t find him.” The local weather dictates staying indoors and somehow my friend has chosen to go for a walk and is nowhere to be found. This is brain cancer.

His son did find him, and we began to work as a team, spending a whole day in emergency, pleading with doctors, and then working with home care, social workers, lodge staff, trying to put parameters in place to ensure my friend is safe. It has not been easy, and it has been all consuming.

One afternoon, it was just him and I. We talked about doctor appointments and what results we hope for. Memory recall lasts only minutes, so the conversation is repeated. He is so very positive about life, about finding a cure. “One step in front of the other,” he says. I ask him, “have you given any thought to if the doctor says there are no more treatments they can do?” I ask this because we know this is the case. He looks into my eyes, and I gently touch his arm. “Just for a minute, go there and tell me what you think.” He ponders this. I am not sure how much understanding he has about this notion. He looks up and says to me, “well, what will be will be”. I lifted my coffee cup, and we clinked as if to toast the moment.

 The doctors have said that the end-of-life stage has begun. But we know better. End-of-life does not exist. It should be defined as end-of-earth. We knew 16 months ago when he was diagnosed that this day would come. Somehow, all that knowledge does not make it any easier for us. And the person who we love we now watch, slowly, losing his brain power, not knowing what is happening in his own life. It doubles the grief.

The days are spent in hyper mode calling the experts, driving to appointments, the worry about support…it makes the time go by fast and at the end of each day, we are more like caregivers than friends and family. My friend senses this.  It confuses him as to why we have all these new people coming to visit. Why he must spend time in hospital waiting rooms. Why he must spend the cold weekend at his daughter’s house. He doesn’t understand it is because he can no longer rationalize what is best for his own safety and comfort. This is pre-grief, the early stages where we know the inevitable is near, but we are too busy in the present to be present.

I suggested to his son that we need to focus on the moments of clarity.  These moments are few and far between and will continue to become fewer and farther but right now we have these moments. We must stop thinking in these moments of the grief, of the future. We must open our hearts to feeling the moment. Really feeling the blessing of the moment.  These moments will become the memories, kept in our heart, for the days after grief arrives to stay.

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