Palliative care - it's a beautiful place. It's not the curtains, the nice pictures on the wall, the items with little gold plaques in memory of, the flatscreen TV, or the free coffee and snacks, or the free wifi, or any material thing in here. Yes, they all help.... the patient and the family. But it's the idea of care.... that is beautiful. It's not about "you didn't take care of yourself now let's try to fix". It's the comfort that is beautiful. It's not about suffering unnecessarily.
It's about love and respect of the human form in what may or may not be its last days.
It's about allowing a family to take over the kitchen and make pico de gallo with the tomatoes from my mother's home garden. A story that will be told for years. Remember the time.....?
It's about allowing a family full of kids and sisters and grand-kids to stay until 10pm laughing and screaming and accidentally hitting the nurse call button...remember the face on the LPN when she opened the door?!?
It's about the family taking over the gazebo in the yard ... And a ride through the woods on gramma's wheelchair. A happy 2 year old sitting on those tiny legs of hers...
But it's also about sleeping ... and wordlessness. Peace. Watching TV. Talking about the past. Half a hot-dog because it's tasty. Milkshakes. Water. Sips of coffee. Black licorice pipes. Sketching faces. Surprising everyone. Visits from old friends. Mending of old and current relationships.
Fear.
Unknown.
Days that last forever.
Days that disappear.
And then bright lights of stories. So many stories. Memories. Laughter and childhood fears. Now, how to say the right thing?! How to not say too much?! Too many questions? Too little?!
Others memories of the beautiful effects of a single life - spreading to a thousand people that would not be the same without that single life. Changed. Enhanced. Affected. Altered. Touched. Influenced.
Thankfully
Day in day out. Will one red light or a selfish moment prevent the attendance in the passing of a life. Tough choices between the elephant in the room and the rest of "normal" life. The priority is obvious but the paper-trail of daily life says otherwise. Stress. Anger. Exhaustion. Withdrawal. Disconnect. Those of us destined to stay on this earth, for now, struggle.
Sleeping more. But not me. Watching eyes closed. Breath still present. For now. Which will be the last? I want to know but in my same breath I can't imagine watching the last. Each journey from the front door to bedside is a silent lifetime for us.
The pain. Especially in the morning. Is it managed today? Will it break through?
And the evenings are so much better. Some are quiet - slow conversation filled with long pauses. And then others have the kitchen filled with greasy take out, cheesecake, hysterical laughter and the nurse with a smile saying "I'm just going to close the door".
Not every patient is so lucky. Some have consistently quiet days filled with a daily dose of bedside manner. Nurses, LPNs, cleaning staff, kitchen staff are beautiful souls who are not unwelcome I'm sure - but where is the beautiful thing we sometimes take for granted called family. Perhaps alone - the last dot on their map of lineage. Or perhaps just forgotten. How sad. I hope they are at peace with their loved ones.
But there comes a point when the laughter and late nights must stop. Only so much can be handled. A confusing thought for the living. A natural progression for the dying. Further withdrawal and required disconnect. The soul prepares to leave its sinful and imperfect place. It's OK. Not easy for us. Unimaginable. Incomprehensible. But all ways logical.
Bad days. Really bad days. Staring at death. Feeling its presence. Not knowing it's present intention or schedule is torture.
Exhaustion. Taking its toll. Weak legs. Uninterested in food all together. Until one day it is too dangerous to stand or be transferred. Will the bed be her home from now until the end?
She's still my mother. She still has capacity to love. She knows all of us. And from her bed still protects us hoping that we'll be ok while she fears fear but not death.
She hears everything. Even when you think she's asleep.
Mornings are always a complete reassessment of everything. Forget yesterday. Only now matters. What will today bring. More sips of coffee and a bite of a doughnut. Good. Wonderful. Hearing about a rare dream remembered walking the halls on implied strong legs - chasing nurses for meds. The brain is amazing.
The brain plays tricks. Confusion sets in ever so slightly. What does it mean...besides the obvious?
Dying. Suffering. Topics finally spoken of openly with a wonderful doctor. "Will I suffer?" - reassurances by modern day tricks to sooth the passing. Relief. What once was taboo becomes the topic of the day. Leading to a grand conversation with grandchildren filled with this openness about dying, heaven, reuniting with lost family members, smiles, and the contents of her mansion. Lots of kids, large rooms, 2 stories, indoor pool, books, and of course...a garden. A simple conversation and a great parting gift from gramma.
More dreams - of death and dying. Letting go. Giving up. Giving in.
She told me that she was frustrated. Because she is still here. Was hoping she just meant on palliative care. But no. On earth.
The last full sentence spoken. Then the next morning answering "yes" to the question would you like the sacrament of the sick?
Then wordlessness - this time unintentional. Permanent? The hours or days will tell. For now the sound of breathing and is her dialogue that fills the air. A 10 day possibility. But I knew it was to be today. I couldn't share my conjecture - it was unfounded in all but my heart.
Last visits. From a loving family. All of us.
Goodnight's, love you's and see you tomorrow's.
I offered again to stay night..by her side. Not offered. Needed to.
Sat in silence beside her. Had been staring at her bible for 3 weeks. Thought so many times, I should read with her. Decided now I would read to her. Scattered verses for times of need. Times of strength. All inside the front cover.
Words from God. A trigger? Crying. Not mine. Hers. Eyes opened. Looking straight ahead. Not at me. Through me. Through everything. Looking at things we can only imagine. Crying for relief? Crying for the end? Crying for a beautiful life? Crying for Joy? Just crying.
Phone calls to my sisters. "The girls are coming mom. I love you. We love you. Oh my God!" And then beautiful words from a palliative nurse that I couldn't muster as her breathing slowed. "It's OK Ronalda. You've had a wonderful life. Full of love. With a wonderful family who loves you. It's OK Ronalda. You can go now to see your husband Deryl."
With one final ounce of energy she made a face like a beautiful baby crying, seeing her mother after missing her for too long. No more taking care of. Now being taken care of.
The pain, the stress, the anxiety, the unknown...it all left her body. Left her face. Leaving her looking like a million bucks.
Within minutes...a large remainder of this wonderful family, gathered in tears. Then in prayer. Then in stories. Then in laughter. Then once again a nurse...this time silently but with that same smile saying "I'm just going to close the door". Life lost. Life Continues.
Take Care Mom.
By Deryl Gallant, www.derylgallant.ca