Thursday, May 30, 2013

Every Day is a Gift

Every Day is a Gift

For the past two weeks, I have been doing my student practicum (internship) for Health Information Technology at Gentiva Hospice. I thought I would just be learning about medical records, but what I really learned is far more valuable than  any degree I will be earning when it's all over.

I have always been the kind of person who gives everything I have to anyone who asks. I've lost thousands of dollars, my dignity, my heart, my trust in other people, my confidence in myself, and so much more over the years. In fact, the day I began this internship, the man I thought was the love of my life decided he didn't love me any more and walked out on me and my children like we never meant a thing to him. It felt like my heart had been stabbed a thousand times over. I had never felt so crushed. I was in shock. I absolutely couldn't believe the man that once wanted to marry me (one day, he said) and adopt my children as his own, was throwing in the towel and walking away from it all. All of the plans we had made for the future, for the kids' future, for our life together, were gone in the blink of an eye. I felt like a complete shell of a person that morning. Not only did he completely devastate me, but I worried even more so for my children who adored him. The other day, I finally broke down and told my six year old daughter that he wasn't coming back, and she cried...hard. She couldn't understand why this man who had doted on her so much was never coming home. It took me a few times of explaining to her that he wasn't just staying somewhere else for now, that he was staying somewhere else forever. She asked if we could go visit him and when I told her no, she cried again. When it first happened, I really hadn't had a chance to process it all because I was in so much shock. Denial I guess you could say. It wasn't until I was driving to my first day at my internship at the hospice that it hit me. I called my Mom and broke the news to her and then I completely broke down. I pulled my car off to the side of the road and just talked to her for a few minutes, sobbing into the phone. She helped me pull it together enough to make it through that first day of my internship. I had wanted to cancel the whole thing, give up on school, and to be honest, I was ready to give up on life in general. I didn't know what my life was any more. I had made him and our family my entire world and that world was gone in an instant. It may seem a little dramatic, but to me, it really felt like a death. To have everything you've ever wanted in life taken away from you just like that, with no warning, with no real reason, and in such a cruel and heartless manner, is more than hard. But I had to keep going. Somehow, I pulled myself together, and I kept going. I know now that there was a reason for it.
Over the next few days, I learned a lot about hospice care and what it all means. Many people are against hospice for one reason or another. Some people think you should fight death tooth and nail, even if it means being hooked up to countless machines, on more medications than any one person should ever have to be on, other people just don't want to accept the reality of a terminal disease. Denial. Then there are some people who think hospice is about speeding up death. Pump them full of morphine, slow their heart and their respiratory systems down slowly with drugs until they die. What I learned over these past two weeks was that hospice is not even close to what I thought it was. When a person is put on hospice, they have a terminal diagnosis. There's a life expectancy of six months or less. Some people last longer, some last only for days or even hours in some cases. You expect the patients on hospice to be elderly and just ready to go. I learned quickly that it is not always the case. 

The first case that really got to  me was the story of a young man who is 35 years old that had fallen from some height and suffered severe brain damage. He was a drug addict at one point in his life and had acquired HIV. He's currently in a nursing home on hospice care and his body is failing him by the day. He loved the outdoors and his family had requested someone push him outside in a wheelchair, however, he has to be suctioned ever few minutes or he will choke to death on his own fluids. In order to grant his families wish to take him outside, they would have to agree to not have him suctioned for the duration of the outing, whether it's five minutes or fifteen and to allow him to die if that should happen. It took a long time for his mother to finally sign a do not resuscitate order on him, surely she wasn't going to agree to let him die just to fulfill his wish to go outdoors. The decision is still pending, and every day this man sits by the window just staring outside, longing to get out. He can no longer communicate. His death in in his mother's hands. Just as she brought him into this world, she is going to be the one to help him leave it. How she chooses that to happen for him I may never know. The day I heard about his case, I got into my car and bawled my eyes out. He is only a few years older than me, I thought. What if that was me? It could be. It could happen to any of us. I couldn't imagine the next two years of my life as being my last. I was overwhelmed with the feeling of loss.  I thought I had lost so much over the past few days with the demise of my relationship, and here this man was, losing his life. How silly of me to feel sorry for myself. But I did, for a little while. It's just human nature.

A few days later, I was able to go into the field on a volunteer patient visit. I met with an 88 year old man and his wife and daughter who were his caregivers. He was suffering from end stage dementia and was nothing but skin and bones. But the minute my manager and I walked into his room, he beamed from ear to ear and said "Where have you been?". He may not know where is he or who many people around him are, but he knew enough. He was the sweetest little old man. As he lay in his hospital bed in his bedroom, he gripped onto the bedrails tight. Every once in a while, he would reach over to hold my hand. He kept telling me how pretty I was, and asked me if I was comfortable. At one point, he even tried to give me some of his lotions as a gift. "Take whatever you want" he said. "I don't need it". He was a WWII veteran, and had worked in New York City as a traffic cop, or so I learned from his wife and daughter. As they left to attend his wife's doctor's appointment, he talked my ear off. It took me a minute to realize he still had a New York accent but once I did, I understood him much better. He trailed off occasionally and I couldn't make out what he was trying to say, but I'd play along like I did. He swore like a New Yorker too, which made me giggle. He talked about the war and about an Irishman who "never fucking listened to him". Then he got quiet for a minute. We sat holding hands, and then he pointed down the dark hall outside of his room and said "Daddy".  I asked him if he saw his Dad in the hallway sometimes. His father is obviously long since passed away. He looked at me and shook his head and said, "Yeah. He wants me to go with him, but he's much faster than me. I don't think I could keep up".  It was as if he had no dementia at all the way he spoke about it. I told him he could go with him when he's ready, that he didn't have to be in a hurry to go. And as if I had just taken a big burden off of his mind, he sighed a deep sigh of relief and closed his eyes for a minute. When he opened them back up and began talking again, he was back to talking about things that didn't make any sense. 

I thought about him a lot throughout the rest of the day. I thought about his wife and how hard it must be on her and their daughter to watch him slip away like that day by day. I thought about how her heart must be breaking inside knowing that the man she spent most of her life with will leave her soon. I think about how tired she must be, mentally, physically and emotionally. She herself is recovering from melanoma surgery. I want to visit them again. I know just having a volunteer there is a big help. Part of me wonders if a little part of her might just be waiting for it to be over. The man she loved for so long isn't really there anymore. I'm sure she catches glances of the man he used to be from time to time, but for the most part, he's just not there. This family is the reason I decided that even after my internship is over, I'm going to volunteer to do respite care for Gentiva. It's hard to see people in their final days, but my heart just wants to help ease the stress of it for them and their families, even if it's just for an hour at a time.

When my Grandparents were in hospice, I was younger, but I helped my Mom as much as I could, especially with my Grandfather. The hospice nurses and aides that came and took care of him were wonderful. Ever since then, I have been a huge hospice supporter, but it wasn't until I actually worked with Gentiva that I truly realized how special this field really is, and how much I am honored to be a part of it. I wonder if I'll truly be strong enough to do it, but I think my heart knows now that death and loss is a part of life. Lord knows I have experienced my fair share of loss, especially recently, but it doesn't have to be all bad. The hospice symbol is a butterfly because of the way it transitions from one form to another. When we die, we most certainly transition. We go somewhere else, in a different form. It doesn't have to be all ugly, gloomy and sad. Death and loss can be a blessing in disguise, and hospice is there to make that transition just a little bit easier.

I'm going to be sad when my old man passes away, but I will be happy knowing he is back with his Dad, and that for just a little while, I was lucky enough to hold his hand and share in his journey as he transitioned from this life to whatever awaits him. If I have taken one thing away from this internship experience, it is that life is really short. The second to last day of my internship, I learned about a 20 year old in hospice care because of an inoperable brain tumor. That will really put things into perspective. I have learned so much about myself over these past two weeks. I've learned that I am a million times stronger than I give myself credit for. I've learned that even in things such as death and loss, there is a silver lining to be found. I've learned that you should love as much as you can, no matter what the cost, because in the end, love is all that really matters. You may someday regret the things you have done in your life, but the one thing you will always remember is the way other people loved you. I think Dr. Seuss once said, "Don't cry because it's over, smile because it happened." Every day is truly a gift. Make the best of each and every one.