Better Version?

I had a conversation with my brother the other day. He asked me if the work I do at the hospice bled into other aspects of my life. He was concerned that I would turn into someone completely unrecognizable from the sister he knew. He mumbled something about how I’m always the one who sees the bright side of stuff and he would hate for me to lose my quirky, upbeat personality and turn into a dark, depressed person who dwells in loss and death.

“It has to change you.” He said. “There’s no way that you can do the work you do without it taking away from who you are.”

He also reminded me that my family and friends are affected as well. Relationships change as I change and sometimes those close don’t know what to say to me, nor I to them.

He’s right. Sometimes I do feel the distance in relationships I had before I started volunteering at the hospice and some days I am dark and cynical and sad and angry. I’m not the same girl. How could I be? BUT that’s the point, I don’t want to be the same girl, I want to be better. I need to be better.

I spent part of my day bringing Christmas gifts to the patients at the hospice and their happiness made every dark day worth it.

So, some days suck, some don’t. I still laugh and play, and beautiful sunny days still make my heart smile. I still blast my car stereo while singing loudly with the windows rolled down and I still dance to my favorite cd of the moment while getting dressed in the morning. I’m still me, just a different version. A better version.....I hope.

"These Times are a Changing"

I love my blog, I love writing about people that would otherwise be unknown, forgotten in the percentages and demographics of this disease.

I love volunteering at the hospice. It has changed my life in more ways than could ever be explained. It’s the subtle things that I notice the most, the quiet shifting and reconstruction of the girl I thought I knew.

What would I do if I couldn’t write it anymore? What would I do if I couldn’t volunteer anymore? Will I still be me, just stronger? OR broken and disillusioned at all that I thought was true?

Never forget, never forget. Please don’t forget them, even if I can no longer remind you.

Thanks,
Claudine

Remembering

Tomorrow is my first day back at the hospice since his death. I almost want to call and find out if a new resident has taken his room, but I know it’s not about that. Sure, I mourn the loss of him, but I can’t let that loss take away what is needed from me as a volunteer. I have to be there for all the residents.

Although, I hope I’ll get a chance to sit on his bed and remember him for just a few moments before he fades away from the space that was his for months. I just want to sit alone in his room and remember when….

Never Forget

He's dead.

I called this time. I called before they had a chance to call me. I wanted to check on him. I was with him earlier and I knew he was fading fast.

I rubbed his head and caressed his face. I talked to him, told him lots of stuff that’s now all jumbled in my head colliding with my emotions. BUT I know I told him I loved him. I rested my forehead against his and whispered goodbye over and over in his ear.

When I saw him last, he knew me. I held the straw to his lips as he drank water, I rubbed his head and he smiled and said it felt good. I told him I’d see him tomorrow before I left and he asked me “what time tomorrow?”

That was the last time he spoke to me, the last time he ever opened his eyes.

I want to call someone and say “he's dead,” but there’s no one to call. I feel the loss, but I’m not sure how that transcends to my life outside of the hospice. It's a juggling act that I haven't mastered yet and probably never will.

I wish I could write something that would do justice to his death, but it's all too much. Or, maybe, not enough.

Tuesday

Today, I left 20 minutes early. For the first time ever, since I started volunteering, I left before my shift ended.

Nothing extraordinarily bad happened. I’ve had far worse days, but today I felt overwhelmed and just tired. I kept telling myself that I got there 30 minutes early, so it really wasn’t that big a deal, except it was. It’s a big deal to me, it makes me sad and I’m not sure WHY?

24 Hours and 13 Minutes

When he came to the hospice he was lying down in the backseat of someone’s car with pillows propping up his head. I had never been at the house for an intake of a new patient. Usually, they come the night before my scheduled shift or right after I leave. I went to the car and helped gather his belongings and wheel him to his room. He had a large group of people that accompanied him, family and friends. We all crowded in his room and started the process of admitting him to what would be his final destination. He was tall. Thin but not wasting, he had that rotting, sweet, sickly, scent of a liver dying inside a body. He was responsive and able to sit and stand with assistance. During intake, we helped him to the bathroom door. He went in alone, and closed door behind him, came out when he was finished and got back in bed. I’m not sure where that strength came from, maybe he needed to reassure his family. It was the last time he went to the restroom by himself.

I signed his paperwork as a witness, helped inventory his belongings, and grabbed a hospital gown from his drawer. His family was concerned that he would be uncomfortable with me helping to undress him. “He doesn’t like women to see him naked,” they all said. The nurse on duty explained to them that he was the only male at the house today so the only option would be a woman, but if he objected that he would “go it alone.” We understand that everyone was nervous and scared; it’s hard on all those involved when someone you care for and love is facing the end of their life and everyone at the hospice is sensitive to the apprehension and fear that comes with that first day. BUT, we did explain there would be times when the only choice would be a female nurse, or volunteer. When everyone finally cleared the room, the nurse inspected his body for any open sores. He cleaned and bandaged all of them and we got him changed into his gown with no objection at all.

When I left later that afternoon, I expected to see him my next shift. He seemed strong. I thought for sure he’d be around awhile.

He died 24 hours and 13 minutes after being admitted.

November was a hard month for us, we lost 9 residents. NINE!!...I hope December gives us a break. It would be nice if all the residents that are currently at the hospice could make it to see the new year. I’d really like to buy Christmas gifts for everyone, but I don’t know who’ll be there December 25th.

I don’t know who’ll be there tomorrow morning when I walk in.

Red Ribbon

Saturday, December 1st, World AIDS Day.

My day started at 6:00 am, After going over my speech a couple of times I met up with Bizzle my partner in all things having to do with the hospice, and, a volunteer coordinator who helped arrange my speaking at the Church.

The ceremony was simple, yet beautiful, with meditation and music, marked by moments of silence. Youthsound, a boys ensemble, played a peaceful, thought provoking piece right before my speech. Their music helped center me, clear my head, so I could deliver my speech with passion and clarity. Other guest speakers included Michael Tolle from Baylor Pediatric AIDS Initiative, and Adam Robinson from First Unitarian Universalist Church.

At the end of the ceremony, a woman whom I had never met, came up to me and hugged me. She clung to me and held me tight, whispering "thank you" over and over again in my ear. I don't know her name or her story, but I'll always remember that hug.

Later that day Bizzle and I went to a couple of other World AIDS Day event. We also stopped by the hospice to say hello to the residents. They’re the driving force behind everything I do, so I couldn’t picture spending World AIDS Day without seeing them.

That night we went to see a benefit performance for HIV/AIDS. It was my first time seeing the show and it was amazing. All the performances were excellent and I was proud to be there. The show ended with the performers: dancers, singers, actors, placing candles on the stage. The entire stage covered with candles that the audience, one by one, climbed onto the stage to light in remembrance of those past.

Bizzle and I made our way to the stage and each lit a candle. It was so beautiful to see, the entire stage lit up with candles by all of us remembering those we had lost to AIDS.

I kept expecting to break down. I kept waiting for the hurt in my heart to engulf me. It wasn’t until the end, when I noticed that the performers had to come back on stage to light the remaining candles, that I let myself feel what was in my heart.

All day I had noticed the lack of attendance at all the events that I went to. I kept wondering why there were so few people out in support of World AIDS Day. Why are we forgetting that AIDS is still a dominant killer? And why don’t we care anymore? These are the questions I asked myself as I thought of all the residents at the hospice who had died and all of the residents who are still dying.

Thank you to all that came out to show your support, thank you to all who remember. Special thanks to Jenn, Jeff, Sacha, Taiwo, and Soleil who woke up at the crack of dawn to come hear me speak because they love and support me. I wish that same love and support for everyone in the struggle……..

My Speech for World AIDS Day 12/01/07

Hello, my name is Claudine and I am a volunteer at an AIDS hospice and despite being an AIDS Hospice it is filled with love and joy. Yes JOY!! Sadness and loss is a given, but the hospice is not defined by it’s losses, but rather illuminated by the dedication and quiet strength of all the staff and volunteers who give so willingly and care so deeply for all it’s residents.

The residents always tell us to never forget them……We should never forget. So, with the encouragement of my husband I started a blog, a space where their life and death can be remembered and memorialized.

I’ve put together a short compilation of various postings that I would like to read.

So you too will never forget.


“The Lord is my shepherd, I shall not want.” Psalm 23, my grandmother’s prayer. The prayer that was read at her funeral, whispered at her gravesite. The prayer I read to him as he lay dying. I stand by his bed watching him fight for a life that’s already gone and all I can think is “please let go, stop fighting.” He was so thin; I had never seen another human being so thin. His ribs jutted through his hospital gown. His hands, skeletal, every bone outlined. He was wasting from AIDS. It is a terrible thing to watch, but he endured it with more dignity and strength then I thought possible. His courage separated him. His warmth and kindness made him a favorite to all of us in the early days, the days when he could still talk and laugh and joke. When I would stop by his room just to hear his pleasant voice, and no matter how small the task I did for him, his gratitude always showed in his eyes.

Now I watch him clinging so hard, fighting for each breath. His death rattle echoing in the hall. I stand by his bed until my skin screams. I ALMOST run, but his terror filled eyes open and meet mine. They can barely focus, but I know he sees me and I see how scared he is. For some reason that steadies me, I know I can be there for him, I know I can help him not be so scared. I sit by his bed and hold his hand as firmly as I can without causing him pain. I want him to know that someone is beside him. I want him to know that he’s not alone.

“You don’t have to fight so hard anymore.” Let go, just let go.” I whisper in his ear before leaving. Hoping that I get a chance to see him alive again and praying that I don’t.


2 months later

The day started with Ms. but unlike last week when she was giving me a run for my money, today she was barely alive. “Actively dying” it’s called. Last week I was chasing her around her room trying to get her dressed. This week she wasn’t even able to suck water through a straw. Barely breathing, so small and frail in her bed; face drawn, eyes rolled back. It amazes me every time how rapid the decline can be.

Her family had been called and they crowded into her room, crying and writing Bible verses on paper for her, stepping outside on the patio to smoke, drinking coffee, and hoping for the best. There’s that word again “hope?” I’m not sure how to even begin to address “hope” as it pertains to the patients at the hospice. My HOPE is that they’re not so scared, that they find some kind of peace, and that they don’t die alone.

The day was ending for me, almost time to go home. I went to Ms's room before I left to say goodbye, I wasn’t sure if she would still be alive the next time I came to the house and I wanted to sit with her for a few moments. Her family had already left, all of them gone, as quickly as they had arrived. Standing outside her door I heard someone singing softly. I walked in and a volunteer was holding her hand singing from a hymn book. I sat down, closed my eyes and listened. It was the most peaceful I had felt in a long time.

Minutes later, Bizzle, another volunteer, joined us and with tears in our eyes we said our goodbyes singing long forgotten hymns to this strong, feisty, woman who had challenged us in the best of ways.


The hardest part is the residents that you don’t get a chance to know, the ones who come already at death’s door, who barely make it through the day and succumb to the “dying of the light.” The ones you take care of for that shift, and you know that you will never see again. They’re the ones who sneak up on you, the ones who haunt you. Their faces stay, long after their names start to fade from the list in your mind. The list of the people you knew and cared for at the hospice that you carry with you. I think everyone there has a list, some longer then others

Like this amazing nurse and shift leader who been at the hospice for 11 years. Who each week flies back and forth from his home to the hospice to work back to back 12 hour shifts because he believes it's worth it. According to him, the hospice is one of the best places to work because you feel your impact. Everyone there is there because they want to be, volunteers and staff. He believes the mix of volunteers add to the hospice, “makes it better.” he says, not only for the residents, but for the staff as well. The blending of so many different personalities creates a unique environment that makes the hospice stand out. He enjoys the juggling act of working with various volunteers because it also allows him to see the good in people. Not all professions allow you to see the great things that people have to offer at no benefit to themselves.


Finally I would like to leave you with one last image from my early days when I first began volunteering. A resident I cared for that I will never forget, even though I barely knew him.

I moved him on his side and held him. I washed his arms, legs, chest, skipping over the bandaged sores that checkered his body like coordinates on an unreadable map. I didn’t know him. He was a new resident and wasn’t expected to last long. He was the first man I’d ever washed, and he was a mess of scars and holes. He smelled like an infected open wound. I puked in my mouth, swallowed and kept washing. I cleaned the thick white paste from his cracked lips and beard off his swollen face. I was wet with sweat and shaking, and he never opened his eyes. His moans told me when I pressed too hard or repositioned his body too quickly. Finally, when it was all done, when he was all clean, in a new hospital gown, with fresh sheets on the bed, he opened his eyes and he looked right at me. I held his vacant gaze for a second and then looked away and bolted from the room.

The next morning he was dead. I hope he knew that a scared girl, who had never washed a grown man before, as tenderly as she could, cleaned every part of him as if he was her brother, father, husband, son.

Thank You