Happy Birthday Dad!!!!!!!

I have one loyal reader of my blog that I know of. My dad. Today is his birthday. My reason for writing this is that none of this could be possible without this man. Not only is he my dad, he gave me life and all that good stuff.... He has always been my biggest support. He sat me down in the dinning room and said, "you have to go back to nursing school." He convinced me that at 30, I was not too old. He told me I had a gift. That I was meant to be a nurse. I reminded him that I had two kids to take care of. He promised that him and my mom would help out financially as much as they could. They did. A lot.

My mom and dad never finished college. Yet they instilled in me everything I needed to get through it. Work ethic. Professionalism. Integrity. The grit to not quit no matter what. They taught me to persevere despite hard times. College doesn't teach that. For me quitting was never an option. My dad always let me know he was praying for me and knew I could do it. The truth is, I could not have done it without him. He was my rock. If it wasn't for him. I truly believe I would not be a nurse today. One of my most proudest accomplishments.

Thanks Dad. Happy Birthday.

I love you.

Champagne Punch......

Is champagne only for black tie affairs? So many times we only bring out the bubbly for those special occasions. Weddings. Anniversaries. Romantic dinners. What about a hot, humid, sticky, June day? A day spent in the yard with friends, children running underfoot wearing only diapers and sticky faces. A day where a summer thunderstorm cools off the day for only a few short minutes.

I recently went to a get together with a friend. We spent the day eating good food, hanging out with good people. Some played croquet. Others sat lazily in the summer heat, talking about nothing.

And some made champagne punch.

It was the perfect summer drink. Made with pink lemonade, a bottle of champagne, chunks of pineapple, and strawberries floating about. We drank every drop. I remember thinking it was odd to be drinking champagne on a lazy, summertime Sunday. I had only toasted the stuff on special occasions. Later, I thought more about it. Why can't a great day with friends be a "special occasion?" What is wrong when we don't hold those days with the ones we love, chasing balls across the lawn as special? Aren't these the times that really matter? These are the days that we truly remember. The ones we think about when we fall asleep at night. Weddings, Anniversaries, romantic dinners are few and far between. They happen a few times a year. Days spent with the ones we love happen everyday. Celebrate them. They are the times that really matter. The ones we should drink champagne punch for! We shouldn't stop there.....

Bring out the good dishes. Use the silver. Serve kool-aid in the fancy goblets. Dance with the one you love, barefoot in the grass. It may be the last time you dance with them. Don't wait for a dance floor. Make your own. Dance to the crickets and the frogs. Find that fancy dress in the very back of the closet. The one that you save for weddings, anniversaries, romantic dinners.

I have a new patient. Last week he was working a part time job. Enjoying life.He thought he was healthy. They told him last week he had two weeks to live. This week he became a hospice patient.

I wonder when was the last time he drank champagne punch?

Lessons learned.....

Today is a rainy Sunday afternoon. It is one of those days that you just don't want to do anything. I started the day giving orders to the kids about chores that need to be done. Their rooms just HAVE to get cleaned today. Then it hit me....why? How many people on their death bed wish that they had cleaned more? So, I called my daughter down from her room and yelled for her to grab a pillow and blanket. We hunkered down to watch the sappy, chick-flick, "The Notebook" I need to do these things more. Things that don't make sense. Fun things just because. I have always wished that I had been one of those young adults that had gone backpacking across Europe after high school. It has always been a regret of mine. I decided that it doesn't have to be a regret. I will do it. I have had too many patients that planned to travel when they retired, only to be struck down with cancer in their 50's or 60's. I am not going to wait to do the things I love. I am not going to die with regrets. I am not going to miss the chance to spend rainy days with my daughter.

I will probably have to save for my trip across Europe. I will also have to wait for the kids to get a little older, but I will do it. I have a plan. I am learning from each of my patients. Sometimes I am learning what NOT to do. We can't get these days, hours, minutes back. We hear these things so often but I live it every day. I see the broken dreams. I don't want that to be me. I want to LIVE! I want to travel, cook, play, read, love, run, climb, laugh. I want to live this life as fully as I can.

So, the room eventually was cleaned. It got done. The most important thing about this day thought is the time that we spent together. Who cares about how clean the house is. Who will remember that?

A love like that....

I went to the funeral of one of my patients the other day. This patient and family was one of the most challenging in my short hospice career. They were Asian and there were many cultural differences. They were Christian and very strong in their faith. They believed he would be healed and get better. This man was 46 years old with a wife and two teenage children. He did not get better. He was my patient for about three weeks. I saw him almost every day because we were giving him daily IV fluids. They somehow believed if he could get these, he could recover. Every day he got worse. Every day, I tried to gently explain to his wife and family that he was dying. His wife refused to believe it. She would ask me questions about his condition. My answer usually had something to do with him getting worse and dying. I was so frustrated that she was in such denial! I knew she loved him but it was frustrating for me that Dr's, hospice, everybody involved had told her that he was dying but she refused to believe it. For weeks this went on. She never did "get it" She took such good care of her husband. She never left his side. She never gave up hope.

At the funeral I finally "got it." I went to the funeral with the Social Worker that had been involved with this patient. She is a divorced, single mother like myself. Towards the end of the funeral they had a slideshow of my patients life. The photos were of his wedding day, holding his children when they were babies, family vacations,birthdays, and other special days. As I watched this wife, I could see how much she loved him. This is why she did not give up. This is why she would not let herself believe that her husband was dying. Some people call it denial. I saw it that day as love. I turned to my friend the Social Worker and asked, "Do you ever wonder if you will ever find a love like that?" I whispered. "Everyday. She whispered. Everyday."

Me too.

Where is God?

I love my job. I really do. Sometimes I wonder though, where is God? I saw a new patient today. He is 36 years old. He has ALS. That means his muscles are dying. They are slowly going, until none of his muscles will work. His body will fail. His lungs will not work, his heart will not beat. He will die. Did I mention that he is 36? Did I mention he has a 3 year old daughter? Why God?

This is my second patient with ALS in two weeks. Both are young. They are husbands, fathers. What is my role in this. Why am I their nurse? I don't believe in accidents or coincident. I have been feeling burnt out today. Wondering how long I can do this work. I don't know what else I would do. I feel like this is my calling. But how many more loved ones can I look in the eyes and say, "he will probably die this week....." It is hard. I am human I grieve too. Even for the patients I only have for a few days or weeks. I am touched by every single one of them.

I don't believe in accidents or coincidents.

It's not about me.....

My patient's name was Patty. She was 58 years old. (her real name and small details have been changed for privacy.)

Patty and her family were from the hills of West Virginia. They were very simple people. They started their lives with almost nothing, worked hard for a home, cars, the "American Dream."

Cancer took it all. By the time I met Patty, her husband, and their daughter they had lost almost everything. They lived in a tiny apartment. They had lost their home when they filed for bankruptcy. Patty's husband Bob, was self employed and they had no health insurance. When Patty got cancer she needed chemotherapy. By the time the treatments started and failed, everything was gone. When she became a hospice patient they had exhausted all treatment efforts and finances. They were very proud people and worked very hard. They did not ask for much.

I met Patty on a warm September day. She was doing well. She was still able to do small household chores, her appetite was good, she took no pain medicine. I explained hospice services to Patty and Bob. Hospice does not charge patients that have no ability to pay. We offered many services that would benefit Patty and her family. A chaplain to talk to about spiritual issues, a social worker to help her through the many emotions that dying patient's face, me, the nurse to help with symptom management, a volunteer to help run errands or any other chores that they might need, a nursing assistant to help with bathing and other personal needs on the days that she felt weak and needed the help. Patty and Bob only wanted a nurse and social worker. I am not even sure they really wanted us! We came as a package deal. They had to have us to have hospice involved, everyone else was optional. They politely declined the help. Hospice also pays for medication and medical supplies and equipment. They never asked for any of it. When his wife needed a shower chair to assist with bathing, Bob went out and bought one. I would tell them time and time again that we would supply equipment but they always seemed to "forget."

Patty and I mostly just talked at our weekly visits. She was doing very well. She told me all about her and Bob's courtship, marriage,and having their daughter. These were not educated people. The best way I can describe them is simple. Patty did well for a couple of months. Sometimes she would talk about her impending death and cry. She loved her husband and daughter so much, but knew that soon she would be leaving. On one visit, she told me that she felt like she was being punished by God for something she did in her life. She would still not let us call the hospice chaplain to make a visit. We talked about if God punished like that then a lot more people would have cancer! Patty told me she was a Christian and knew she was going to heaven. She didn't need a hospice chaplain to tell her that.

Patty started to slowly decline around Thanksgiving. She never really had much pain but her breathing grew worse. Her lungs started to fill up with fluid. She needed to sleep upright to sleep. I suggested a hospital bed. She thought about this for a minute. "you can use the electric controls to put the head of the bed up, you will be able to breath much easier," I told her. She was quiet for a few minutes and then she said no. "I wont' be able to sleep in our bed next to my husband. I want to stay with him." I was frustrated. She needed to breathe! That hospital bed would be so much better for her! She had spoken though so I went with it. Next week her breathing was worse. I brought up the hospital bed again. The answer was still no. I rounded up all the pillows around the house and we propped her up. I asked about a Nursing assistant again. Certainly she would want someone to help her take a bath now that she was not able to do so on her own. The answer was no. Her husband would help her when he came home from work. By the next week it was difficult for her to get up to the bathroom to urinate. I asked her if I could put in a foley catheter so she wouldn't have to get up. I bet you know what her reply was! No. Her family would get her there. Her husband now had to carry her.

I saw Patty the day she died. It was exactly one week before Christmas. She was in the bed that she shared with her husband, piled high with pillows. The bed and pillows looked huge with her tiny figure fading into the center of the bed. She tried to speak to me but could not. She wanted to go to the bathroom. I tried to help her get up but she was too weak. "Patty, let me put the catheter in so you can go." Again she said no. "I can't get you there and Bob is at work." She looked up at me and said ok. Her daughter was now giving her medicine to relax, ease her breathing. She still had no pain. We pulled her up in bed, stacked the mountainous pile of pillows behind her and I left. Patty died a few hours later.

Patty did more for me than I did for her. Patty taught me that this work is not about me. It is about my patients. I finally "got it." We meet them where they are. It is not about what I and my four year nursing degree think they should do. It is all about my patient and what THEY need. Working in the hospital you do things your way. Your schedule. When I go to my patients home it is what they want. This is the heart of nursing. This is how it should be anywhere. Whether it is at a hospital or in our patient's own home.

Patty died in the bed she had shared with her husband of 34 years.

Just like she wanted it.

Becoming a hospice nurse.....

I became a hospice nurse because I wanted to practice the real art of nursing. I wanted to truly care for patients and not put them through more pain suffering. I worked at a large teaching hospital on an Oncology floor. We justdid more treatments, gave medicines, chemotherapy, radiation. Most of the time it did not matter what the patient wanted. They were there to cure. Whatever the cost.

I started to do hospice in August, 2006. I was in for some major lessons. Things were no longer on my terms. I was now in THEIR homes. Things were going to be done their way. No longer was I the nurse going to say, "This is your medicine. It is time to take it." They were at home. They do what they want. We suggest. They do what they want. Sometimes this is a good thing. Sometimes not.

One of my first patients was J. He was 58 years old and dying of lung cancer. Talk to J though and he was not dying of anything. J had pain medicine at his house. He had three different types of morphine there. He had a kind that could be inhaled, he had it in pill form, and in liquid. When I came to see him for our weekly visit he always said he was in pain. "Did you take your pain medicine?" I would ask. He always said no. In J's mind, if he took that morphine it meant that he was dying. He would not take it. I came twice a week, taught him and his family in his tiny housing-project apartment. He would not budge. Finally after about three weeks, he took it. But he did it on his time. That was my hardest lesson. I am the nurse. I can teach, suggest, and sometimes plead! When you are in their home though, it is done their way.

My patients always thank me. Their families thank me. They tell me they don't know how we do what we do. The truth is I am absolutely humbled that they allow ME to come into their homes and their lives.

It is an honor.