As parents, we get a lot of experience helping children to feel safe and secure. When my son, Tommy, was a preschooler, he sometimes awakened screaming with night terrors. For 45 minutes or more, we’d try to awaken and comfort him until eventually his fright passed. As children grow up, we reassure them when they worry and help them to understand that their fears are often worse than the things they imagine.
Now I understand why two of the five medications in the hospice “comfort kit” address anxiety.
My Dad’s always been a disciplined man; a career in the Marine Corps will do that to you. During WWII, his ability to organize and prevent disruption in manpower and supplies led to him receiving two bronze stars; my first Henry Chronicles blog post described some of his war time experiences.
His world now is filled with different kinds of fears: fear of falling, fear of having his nose drip, fear of soiling himself.
He has meticulous habits aimed at preventing problems. When arriving at the breakfast table, he carefully layers one piece of kleenex onto another and places those handkerchiefs in his breast pocket. He tucks several napkins between his thighs and clutches more kleenex in his hands. When he transfers from his wheelchair to his recliner, you first have to remove the half dozen caches of paper products. Thank heavens for Costco.
Since Dec. 22, my father has been unable to stand by himself, so we have been transferring him from bed to wheelchair to recliner to toilet and back, over a distance of one to two feet each time. As we prepare to move, he always asks, “So what are we going to do?” The caregiver or I explain that he will put his arms around our shoulders and we will bear hug and lift him, then “dance” or shuffle to the new seat.
This vision of my Dad is burned into my mind: he, with his arms outstretched, just as a child would ask to be carried.
Unlike a child, however, my Dad is not a small guy. He weighs 200 lbs, 40% more than I do, and he knows it. When I lift him to a standing position, he is momentarily balanced on his legs, relying entirely on me – or the other female caregivers – to get him safely to his new perch. More often than not, he either grabs my arms or neck in a strong claw-like grip, or wheels an arm around searching for something to grab onto – the arm of a chair, a towel rack, window shutters or a door, anything solid.
He is safe. My legs are strong and I rarely move him without a second person in attendance for backup, but it is hard for him to believe that we are capable of supporting him. He has relied on his own strength and volition his entire life. Independence is security. Dependence is terrifying.
Lately, his anxieties have extended into his night life. As he goes to bed, everything must be arranged just so: kleenex in his pajama coat pocket and laid in careful squares by his pillow, another placed in his hand; a digital clock set on a small table by the bed so that he knows when it is morning; enough light to see by, the bathroom light left on.
Last night, he anxiously awakened at 1 a.m. thinking he had soiled himself and the bed. He had not.
His sleep, like his day, is now “managed.” Natalie, our nighttime caregiver, hovers just outside his door, listening for agitation and shortness of breath. When his sleep is disturbed by shortness of breath, she quietly squirts a quarter syringe of liquid morphine into his mouth. When he awakens, discomfited and asking for me or to get up, she delivers a small dose of haloperidol to ease his anxiety.
I struggle with understanding the how and why of agitation, confusion and anxiety, which I’m told are often part of the end of life. Our hospice nurse, Diana Skinner, tells me that they may be part of the process of “life review” — letting go and transitioning to the next world. While someone is still “with it,” as my Dad is, they may also be acutely aware of their loss of control and feel vulnerable, which spills out in the form of anxiety.
I can hardly blame him for feeling anxious, but it is painful to see him so. My Dad once told me that one of the hardest things about my mother’s terminal illness was knowing that she was afraid. Here we are again.
Sometimes, as then, I pray. I pray for peace for my Dad, and I pray for peace in my heart. Sometimes I turn to this prayer from the evening service of the Anglican Prayer Book:
it is night.
The night is for stillness.
Let us be still in the presence of God.
It is night after a long day.
What has been done has been done;
what has not been done has not been done;
let it be.
The night is dark.
Let our fears of the darkness of the world and of our own lives
rest in you.
The night is quiet.
Let the quietness of your peace enfold us,
all dear to us,
and all who have no peace.
The night heralds the dawn.
Let us look expectantly to a new day,
In your name we pray.