Expression of Gratitude

"Feeling gratitude and not expressing it is like wrapping a present and not giving it."

- William Arthur Ward

There’s a thank you card that sits on my desk at home, signed by all of us Groover kids. It was my responsibility to write a personalized note to our Hospice Team for all they did for us in the months, weeks, days, and hours leading up to my Mom’s passing. Three years later, it still sits on my desk, waiting for those perfect words to express the immense amount of gratitude we felt as a family. How could I possibly put into words ALL they meant to us?

My first experience with Hospice came when I visited my Uncle Bill at the Gerstenberg Center in West Palm Beach. He was in the advanced stages of cancer and I was going to say my final goodbyes. This man was always smiling, always laughing, always had a joke or witty remark. Now he was surrounded by tears, where once laughter had been. It was incredibly sobering. I remember my Aunt fussed that Hospice was keeping him sedated by administering copious amounts of morphine. I remember my Mom had echoed my Aunt’s concerns and before long, my first impression of Hospice was, “Hospice = drugs = death."

Hospice was reintroduced into my life the summer of 2008. My Mom was now showing advanced signs of cancer and my sister, Ginger, a nurse, discussed the possibility of having Hospice come into the home to look after her and provide medical support. Not nursing care, just simple routine checks. My Mom’s only impression of Hospice was “that’s where people go to die”, “having them here will advance my death”, and “they’re going to dope me up and kill me.” Unable to convince my Mom otherwise, we had a family meeting in the home with a Hospice Coordinator to discuss, frankly, the benefits of having home Hospice care. This was not only an education for my Mom, but also for me and several of my brothers and sisters, who only had that negative connotation of what services Hospice provides. My Mom was free to voice her concerns and get answers to her questions. She gave them strict instructions on what her wishes would be in the coming months (including morphine distribution) and then she very bluntly asked them if they were there because she was going to die. We all knew her situation was terminal, but the Hospice coordinator explained that they stay on for 6 months and if the patient shows signs of improvement, they withdraw their services. Sometimes a patient will recover or go into remission. Sometimes a patient thrives and services are not needed for another year down the line. Every case is different and they communicated that they would stay as long as she needed them too. Whew. That put everyone’s mind at ease and, quite honestly, allowed us to live in a small gray area of denial for a little bit longer.

It was over the course of those next few months that we had a clearer understanding of what it meant to have Hospice in the home. Hospice provided an oxygen machine for my Mom. She had a 'tool box' of all sorts of medications she may need, including morphine (both IV and pill form). So my Mom had the freedom to take pain medication as she needed. She could control her dosage and manage her pain - and she appreciated having a voice. A nurse would stop in weekly - for no more than an hour - to check her heart rate, oxygen levels, and talk to my Mom about her pain management needs. If my Mom needed more than a weekly check-up, the Hospice nurse would kindly suggest that next level of attention and ask my Mom's permission to come in more often until they felt comfortable cutting back their visits. There was no fanfare, no frustration, no alarm, and absolutely no inconvenience. It was simple. It was routine. It was easy. And that's exactly how my Mom wanted it - if she had to have it at all.

Late in 2008, the nurse visits became more frequent as my Mom's oxygen levels were constantly being adjusted and her pain managed. She was still taking her pain medicine on her own in pill form. She was still able to get up and walk around and eat at the table with us; she was just beginning to tire more easily. Her best day came just before Christmas of 2008, and she was able to enjoy a beautiful Christmas with her entire family. All 6 of her children piled into the house, with their spouses, significant others, and her grandchildren in tow. My Mom sang Christmas carols, shared stories, laughed, cried, and we made memories that night. Shortly after New Years, we all began to see her condition decline. My Aunt (the Hospice hater) came in from Ohio to stay with my Mom and to provide additional support. Hospice nurses continued their visits, but did not stay overnight. My Aunt was defiant with Hospice at first, given her previous experience with them, but my Mom was able to put her (albeit reluctant) mind at ease that SHE was in control, not Hospice, and that they were respecting her every wish.

One morning in February, she didn’t get out of bed. She was too weak and felt like her legs “wouldn’t work”. I anxiously called her Hospice Nurse who asked me a few questions and calmly reassured me she would be over shortly and would inform the doctor. The next several hours were a blur as the nurse visited and felt it was time to call in the doctor for further evaluation. My Mom’s vital signs were beginning to slow and she was exhibiting more signs of the ever-progressing disease. Before the nurse left, she quietly suggested we call the family so they could make arrangements to be close during this time. They were ordering Crisis Care for my Mom. As my sister explained, that's the team they call in when it's the end. It would be 24-hour around-the-clock care from here on out. The revelation was like a punch in the gut. One by one, we all joined together once again under that roof where many of us had been raised and all of us had shared that wonderful Christmas with her just 2 months earlier. It was just a matter of time.

Each crisis care nurse had their own personality but each was incredibly respectful and always gave the family space. They didn’t sit and watch TV; they weren’t on their smart phones. They were always calm and had such an aura of peace about them. Wherever we were congregating as a family, they would be in an opposite room. It just always seemed to work out like that. They were always “busy” with something, whether it was writing in their report about my Mom’s condition or checking on my Mom. They seemed to float between responsibilities with ease, patience, and calm. As a family we didn’t feel obligated to entertain them or feed them. They just seemed to BE. I don’t even remember them using the bathroom. They were never in the way, even in a small house full of 9 people. They were ever so present, but so unassuming…like angels. There were about three or four nurses on rotation that weekend and they all played an integral role in those final 48-hours leading up to my Mom’s passing. My experience in the past with hospital nurses hadn’t always been pleasant. Many of them lacked bedside manner and they uttered few, if any, comforting words. The Hospice nurses were different. They knew what their role was: to assist in the peaceful passing of someone else’s loved one. And they did it with grace and love. I would nervously chat with the nurse that was on duty and express my feelings about the situation. On one evening, I sat with Maxine (my favorite angel), and told her that my brothers and sisters were laughing in the other room but I was just so angry and I didn’t know why. She said, “Of course you’re angry. You love your Momma. You don’t want to lose her. It’s scary. Everyone expresses emotion in different ways. They’re not wrong for laughing and you’re not wrong for being angry.” *sigh* She was right and her wise advice helped me get through that moment and I joined my laughing siblings in the other room. It ended up being one of the most memorable nights of our lives.

On the morning of my Mom's last day, I sat on her bed as Maxine checked her vitals and I shared how we had all stayed up laughing until dawn (something my Mom would certainly love to know). Maxine leaned into my Mom and smiled, “Oh, I heard your kids laughing last night! Boy, you sure do have some great kids!” to which my Mom breathlessly replied, “My kids, they’re a riot.” As the day went on, we kept our round-the-clock vigil back and forth between the bedroom, the living room, the kitchen, the patio…my Mom drifted in and out of consciousness because of the disease, not the morphine. It was a firsthand account of just how this terrible disease sucks the life out of its host. She would be lucid and try to talk and then she’d be still, her breathing labored. The doctor came in that afternoon to check on her and he quietly stepped out of her bedroom and closed the door behind him. Still in that gray area of denial, I think somewhere inside us we were all waiting anxiously to hear those wonderful words, “She’s going to be fine!” Instead he simply said in that familiar Hospice calming tone, “She’s passing. It’s just a matter of hours. Now would be a wonderful time to draw near to her. She can still hear you and she senses touch but will be unable to respond. Hold her hand, talk to her. I’m so sorry.” Throughout the day, we all took turns spending time with our Mom. While Maxine was our nurse that day, she was due to be relieved later that afternoon with a different Hospice RN. With tears in my eyes I begged Maxine to stay with us through the passing. I couldn’t imagine not having HER there when she had been my closest confidante and bended ear during the most difficult time of my life. She explained she would have to allow the other nurse to take over, but (she winked) she was sure there was some shift change ‘paperwork’ that needed to be done.

As my Mom’s breathing became more and more labored, we all knelt around her bedside, placed our hands on her, and spoke to her one by one. We prayed, we laughed, we cracked jokes, and just before 9 p.m. on February 21st, 2009, we gave her back to God. This was exactly how my Mom would have wanted to leave this earth. With grace, dignity, peace, and surrounded by her kids. Hospice took the everyday health care burdens off of our minds so we could concentrate on the most important things like coping, supporting one another, and spending quality time with our Mom. There was enough anxiety and worry that there was no room for anything else. While there are a lot of words here to describe my experience with Hospice, I still feel like I’m unable to capture the spirit of what we actually felt over those precious 48 hours. How Hospice moved in swiftly and with grace to provide us and our Mother with an experience like no other. They provided not only physical care but also emotional care. I’m not sure what the nurses discussed with my Mom when we weren’t there, but I know she too had a peace about her throughout the entire process. My Mom had been in control the entire time and when she was unable to communicate, the nurses turned to my sister, Ginger, for guidance on how to best serve my Mom according to her wishes. All the fear and misconceptions of Hospice had been dispelled and in its place was a new found understanding and appreciation for their services.

For three years I've stared at that card. And here it sits, still void of any expression of gratitude. In 2010 I attempted to volunteer with Hospice, but little obstacles seemed to block the way. On the day of my interview, the alarm was set correctly but didn't go off. On another day, my car broke down. After checking my emotional readiness and taking these coincidences into consideration, I realized it just wasn't time yet. I wasn't ready. But I'm ready now and I became a volunteer with Hospice of Palm Beach County. This time around, everything just fell into place and Hospice and I were again reunited. I went through training last week and visited with my first patient shortly thereafter. I enjoyed our visit so much, I found myself thinking about her all night and looking forward to seeing her again. Again, I find myself at a loss for words to describe this experience and the HONOR it is to visit with such a wonderful person. It is truly a privilege to listen to her life story. I still feel as if it all needs to be chronicled and I want to write down every word, remembering her smile at every inflection. She is at such peace with where she is in her life that I just couldn’t help but fall in love with her immediately. And so, I will continue to visit with my patient until I'm no longer needed. Someday I know I will have to give her back to God as well. Until then, I'm HER angel and an extension of my Mom, and everyone at Hospice of Palm Beach County.

Unfortunately, all of us will be exposed to cancer either directly or indirectly in our lifetime. Some of you may have already experienced Hospice in your life and have your own story to share. There are many ways you can give your time to Hospice. Visit http://hpbc.com/volunteer/ and take a look at all the different volunteer opportunities. There is no obligation or fine print. There's even a volunteer program for professionals in the community who would like to donate services such as: hairdressers, nail technicians, massage therapists, accountants, etc.  Find an area that's right for you, where you’d feel most comfortable spending some time, and be an angel and give. There is no greater reward.

"It is one of the most beautiful compensations of this life

that you cannot sincerely try to help another without helping yourself."

- Ralph Waldo Emerson