They had hospital beds side by side in their apartment at the nursing home where they lived. She had end-stage bone cancer, barely holding onto life. He was diagnosed with failure to thrive, the only thing he was holding onto in this life was her.
She had weeks to live and every moment was wrought with pain. They both had 24-hour care and the hospice nurses used everything at their disposal to make her comfortable. Her words were barely audible and she was bed bound. She had to be moved every few hours to avoid bedsores but every movement was agonizing. He was constantly concerned about her, wanting to be near her, hoping to depart this world at the very moment she did. He made that clear, announcing that he did not want to live a moment past her last breath – though his health indicated he would.
I was technically assigned as his caregiver. I bathed him, dressed him, fed him, encouraged him to get up and walk around. He never wanted to get up and walk around. He refused to leave the apartment, it was a struggle getting him to leave her bedside. He didn’t want to eat and wasn’t concerned with bathing, either. He sat next to her and spoke to her, he told her how much he loved her and that he would always be right there by her side, and he was. Watching the devastation on his face, and echoed throughout his whole body, as he watched the love of his life wither away was, at times, more than I could bear. There were moments I had to excuse myself and cry in the bathroom, it was too overwhelming to hold back.
One morning I showed up for my shift and she wasn’t there. She had passed away in the night and all that was left was an empty hospital bed next to the one he occupied. He was still sleeping when I arrived and I learned over the proceeding months that sleep would be his only respite. My job, while the general duties stayed the same, changed in drastic ways that day. Along with my fellow aides, who worked opposing shifts from mine, would be to help this man find the courage to live without the woman who had brought life to his world.
We had a routine that I’d like to think he found some level of comfort in. I was with him for twelve hours a day, three days a week. He was almost always asleep when I arrived and I let him sleep in, I knew he cherished it. His favorite breakfast was scrambled eggs and coffee, never anything else. After breakfast I’d help him bathe, usually a sponge bath but if he was up to it I’d assist in showering. The television was constantly set to CNN and we discussed the bad news as it cycled round and round through different newscasters. He was forgetful so he’d repeat what he’d heard five minutes ago, as though it was something new, and I feigned interest as though I hadn’t heard it announced five minutes ago and fifteen minutes before that. He slept most of the day while I did dishes, laundry and light housekeeping. He’d wake for lunch and watch more news, skim through the day’s newspaper and go back to bed.
His life was centered around eating, using the restroom, and sleeping. My goal was to create comfort in these activities, to cultivate space for dignity in doing the things he could no longer do for himself, to give him a sense of pride in the time he had remaining. He often spoke to his God out loud, begging to be taken, to join his one true love in the heaven he so desperately believed in. Sometimes he seemed angry with his God for leaving him here without her, for taking her from him and leaving him with so little.
Compassion is not something that can be learned, it is not a class offered when you are being trained, but it is absolutely a requirement in this line of work. I suppose I could have offered silence toward his agony, I could have ignored his pleas to be taken by his God, but that didn’t feel right to me, even though I don’t believe the same things he did. So I offered encouragement when he was feeling left behind. I asked him if he believed his God had a plan, to which he agreed He did. I assured him that this plan must have included relieving the pain his wife was in, and he agreed she was no longer suffering. I assured him his God did not take him for a reason and none of us could be sure what that reason was and, begrudgingly, he agreed. We had many conversations like that.
I am not a religious person, that is my choice. The man I cared for was and I respected that. I wasn’t certain that I should engage in conversations about this man’s God with him when I do not believe the same things, it took courage and compassion for me to do so. I believed I could help him, maybe give him a little extra strength in his own belief by doing so. I’d like to think that I did. When you walk into someone else’s home you have to leave your own beliefs at the door.
One morning I showed up for my shift and he wasn’t there. He had fallen during the night and broken his hip, they had taken him to the hospital. I never saw him again. I spent six months caring for him – three days a week, twelve hours a day. I spent Thanksgiving and Christmas with him. I cried when I found out he passed away. I was happy for him but it’s still hard when you care for someone for so long. They say you’re not supposed to get emotionally attached to clients but my personality doesn’t work that way. When you spend that much of your time with one person, caring for their every personal need – physical and emotional – bonds are created. It is part of the human experience. I know there are professionals out there who can compartmentalize such things but I put my heart into my work and that’s where I draw my compassion and my courage from. I couldn’t have done the work without it.
A home health aide is the bottom of the rung in the nursing industry. It requires training but you do not receive a certification by the state. When I worked as a HHA I was making less than ten dollars an hour per diem. The hope was to find a long-term case to maintain steady hours and a steady paycheck, but that was hard to come by. On the job you are responsible for all activities of daily living, such as; dressing, bathing, exercising, meals, doing dishes, laundry, housekeeping, assisting with medications, taking vital signs, grocery shopping, driving to appointments, and much more. You are also often dealing with clients who are incontinent and many suffer from diseases such as dementia and Alzheimer’s. All of this takes place within the client’s home, a place with which you are initially unfamiliar with a person and family whom you are also unfamiliar. This is difficult in the best of circumstances and when you are dealing with a client who has dementia or Alzheimer’s it can be downright scary. It takes courage to approach a stranger’s door for the first time, it takes courage to start finding your way around a strange home to find what you need to care for someone, and it takes immense compassion just to try.
Working as a home health aide was the hardest job I’ve ever had, but not because the work was physically demanding, though at times it was. Working with hospice patients is an emotionally excruciating experience, despite knowing in your heart that what you are doing is truly good. It takes courage and compassion to take a stranger’s hand and guide them through their final days on this earth. It takes courage and compassion to provide a stranger with the best possible care and leave them with their dignity and pride intact. Only with courage and compassion ingrained in every aspect of your work can you say you have done your job well.
*This is a 1000 Voices Speak for Compassion post, click the image above to learn more!