Inspirational Stories: Hospice Caregiver: A Story of Inspiration
As I walk through the house, I expect to see him at anytime. My hands sweating with anticipation. My eyes jolt from room to room hoping to catch a peek, trying to prepare my greeting. Just remember, I told myself, he is just a man who needs help, no big deal, no need to be so worried. However, there was a need to worry.
Growing up I was made to feel stupid. Incapable. My opinion meant nothing and I was better off not trying because I would fail. I was taught that love was conditional. This man is the father of a friend of hers. If I fail, I am bound to be belittled, shamed for my behavior.
Hidden away in a back room like a dirty secret I found a very thin, frail man. The smell of urine and cigarettes overpowered the room. “This is Bill,” she said as I extended my hand to greet him. He took my hand and half-heartedly shook it as he grinned with skepticism. He has had many before who have failed him. God I hope I am up to this, I must please him, make him happy, I could not take it if I did not.
That fist day Bill did not say much. I figured he is probably tired of telling his story. Tired of trusting only to be disappointed and abandoned. I took it personally, as I always do. I thought he hated me. I had failed him. I left that day hoping never to have to come back.
I am stupid. I am incapable.
Over the next year, to my surprise Bill and I connected. He trusted me. I became the one person in his life he could depend on. I came to depend on him as well.
“Your health has improved to the point that hospice services are no longer required” I heard the nurse say to Bill as I sat in the kitchen smoking a cigarette. “That’s because my Paula is so good,” Bill explained. “She has done more for me than any nurse ever could”. Me? I thought. I have done more for you than any nurse? But I am a nothing, a pee-on; stupid…Could this be true?
I phoned her as soon as I got home. I was so excited, smiling from ear to ear with pride. “I’ve done more than any nurse he has had, he graduated from hospice because of me!” I gloated. “Well what are you going to do now“, she criticized, “You don’t know how to care for him by yourself, what if something happens, he‘s going to blame you, you will be responsible!” I hung up the phone agreeing with her. My heart in my hands. Why did I get so excited? I should have known better. I am stupid.
“Time for lunch Bill” I said as I walked in the room. He was lying in bed as he always did. Too weak to sit up any longer, too tired to try. I placed my hand under his legs and the other behind his back. With one swift movement, he was sitting on the edge of the bed. I helped him to his wheelchair and brought him to his feast. Corned beef hash with an egg over-easy. He was pale. Very pale. “You go ahead and eat Bill; I’ll go change your sheets.” I told him as I headed down the never-ending hall to his room.
It‘s that smell, the smell that I dread, the smell I never want to smell, the smell that burns my nostrils and tears at my heart. The smell that frightens every inch of my soul. “Just get on the damn bed, “ I cried as I fought with the fitted sheet. “Why the hell won’t you,“…I fall to the floor and as I feel the sting of my tears I realize, Bill is dying. I have failed.
As his legs moved up to his chest in a contorted inhuman way, I could feel his screams of agony throughout my body. The hairs on my arms stood erect as I tried to comfort him. 'Rub harder', I shouted inside myself, 'straighten his legs, you can do it, make it better'. The pain was constant now, no end in sight.
“I can feel myself getting worse”, he said unexpectedly. “Can you?” I asked not wanting to know the answer. “Yes, I think the time is coming.” He said with a grin. “Oh Bill stop it," I said,” You’ll be okay, I’ll make you better.” He looked at me with an expression that is unexplainable. He confided,” Paula, what kind of life is this?” I realized at that moment that it is not about my insecurities, my fears of disappointing her and me. It is about him. I needed to quit being selfish and give him the greatest gift I could give him, death.
Over the next month, Bill and I planned his Funeral. I held every ounce of fear and sadness within. His clothes were picked out, paperwork completed, pastor arranged. He insisted I do one thing that still tugs at my heartstrings today. “Make sure I have a white daisy in my hands before they bury me”, he ordered. “I want to give it to my wife when I arrive”. I made a mental note of this. “Yes Bill, I will make sure of it”, I assured him as I tucked another tear.
Friends and family came to say goodbye. One after another the entered and exited his room. Some laughing, some crying. “He was a good man,” they would say. He IS a good man, I thought to myself. He’s not dead yet.
I hold his hand as he gasps for each breath, each one harder than the first. The blue in his eyes had turned to grey as he communicates with God or whoever will take him from this life to the next. “It won’t be long now,” I tell him. “Soon your suffering will be over.”
Nail beds blue, modeling has begun, posturing in his neck noted. Staying an employee keeps me focused, keeps me from screaming at the top of my lungs at how unfair it is to take my friend.
Death is not like the movies, where they lie quietly with their eyes closed and “fall asleep”. It is loud. It is frightening. Eyes open, staring blindly. Breathing so loud that you feel you will go deaf. Cold in the air. Cold in your blood. You think every breath will be the last until you become so used to the noise that it almost becomes the norm.
October 27th, 2003 my friend, my inspiration, my hero passed away.
Supposedly, your hearing is the last sense to leave the body. Hearing remains for up to one minute. In that minute, I took Bills hand and through my tears I told him, “Thank you for changing my life, thank you for making me who I am and thank you for loving me.” I kissed him on the forehead. “Goodbye Bill.”
I felt complete.
It is funny; when I first met Bill, I couldn’t stand him. Now I cannot stand to be without him. I miss him.
It’s class time, I reach into my book bag to retrieve a pencil. My hand rubs against an old withered paper, stained with tears. William D. Hokans, 83 it reads. I’m reminded that Bill was my inspiration to go to school, to share my gift of caring for the dying. I carry his obituary to remind myself that I am capable.
Hospice Care is designed to care for the terminally ill or dying. It is not intended to cure but to care for. Many have a prenotion that Hospice is just "letting them die." This is true- to a sense.
For Hospice to be involved it is not because this person does not want to live, it is because everything has been done to try to make them better but unfortunatley, the options have outlived the potential outcome. Therefore, Hospice is brought in to comfort the client into a painfree passing. Hospice entiles spiritual, emotional and physical care that helps not only the client but the family involved. "Letting go" of your loved one is very hard. It's an emotional hardship that no one ever wants to face. But Hospice can help and guide you through that transition.
Mr. Bill inspired me to help those on their journey....This Hub is dedicated in his memory.