I was helping him shower and his gratitude moved me, or would have moved me if I didn’t block out the thankfulness in his eyes and the humble way he appreciated every spray of water that I maneuvered around his body. I washed his feet, between his toes, scrubbed his back, arms, legs, and then finally, his hair. I massaged the shampoo into his scalp while his words of thanks echoed, then bounced far away from me.
I didn’t want to be drawn in. I didn’t want to add yet another to the group of residents that have invaded my heart and are still clinging by incredible sheer will to life.
I struggle always, ALWAYS with boundaries. When to pull back, how to give compassionate care without losing myself in their pain, without losing myself…..
I’ve watched him from afar, he was almost independent and needed little patient care. That has now changed and he can no longer do anything without assistance.
I realize now that my attempts have been useless. He had me from that very first shower, the portrait of a man who had been forgotten, the hunger for human kindness, when just a simple act of washing his hair reverberated gratitude that didn’t bounce off me as I thought or wished, but stayed. Hibernating in the spaces of my heart that I thought were already filled, but that’s the thing about the heart, there’s always room for one more.
Tuesday, March 25, 2008
Thursday, March 20, 2008
Faith
When my best friend’s husband found out I would be volunteering at an AIDS hospice, he asked if I was a religious person. He said something like “usually people who work in that capacity have strong religious faith to see them through the dark times.”
I’m beginning to understand where he was coming from.
At the end of the day, you need something more than friends, family to help carry the burden. Somewhere bigger to empty your soul so it’s not stained by the weight of your sadness, blackened by the unfairness of lives taken before they’ve been fully lived. You need to believe that there’s a reason; that it’s not all in vain. You need to believe in something, or else you begin to lose hope.
I’m still searching. But, at least now I’m searching.
I’m beginning to understand where he was coming from.
At the end of the day, you need something more than friends, family to help carry the burden. Somewhere bigger to empty your soul so it’s not stained by the weight of your sadness, blackened by the unfairness of lives taken before they’ve been fully lived. You need to believe that there’s a reason; that it’s not all in vain. You need to believe in something, or else you begin to lose hope.
I’m still searching. But, at least now I’m searching.
Sunday, March 16, 2008
Typical Day (edited and re-posted)
(Written in the last months of 2007 and edited to conform to proper rules and guidelines)
A day in the life of a volunteer varies from volunteer to volunteer. We each have different reasons for being there that drives us in our work. Some volunteers are there for personal reasons, they’ve lost someone they loved to AIDS, and choose the hospice as their alter. Some are affiliated with different organizations or churches. Bizzle is a JVC (Jesuit Volunteer Corp) and we have nursing students that are always running around. I don’t know everyone’s story, but I do know that everyone is there for a reason. Some deeply personal and others purely professional, but we’re all there for a reason.
The last shift I worked was Thursday. I picked up Bizzle on my way in and we made our usual stop at Starbucks, soy ice coffee for her, regular coffee and a bagel for me. We sped down the street with the windows down and the sunroof open singing along to The Beatles - Let It Be. It was one of those rare perfect weather days, sunny and breezy with no humidity that only happens before and after winter.
Every shift starts with a brief meeting that goes over every patient, what they need, and what needs to get done. When we walked in on Thursday, we didn’t need a meeting to tell us that it was going to be a crazy day.
The house changes with the patients, new patients always move the house in different directions. Sometimes you have easy going, independent patients that allow you to do what’s necessary with ease, AND sometimes you don’t. Sometimes you have patients that require a lot more effort. I don’t mean effort in a patient care way. I mean effort in a bite my tongue and count to 10 way.
So back to Thursday.
We walk in and it’s immediate Miss. Her diaper needs changing and she needs to get out of her pajamas and into day clothes. She's a hard one, but I like her. Actually, I like her a lot. She requires an extreme amount of patience; she’s feisty and often forgets what she’s doing and who you are. She’s always telling me stuff that we did together (in her head), and asking me to go to on some random trip with her. I’ve noticed that type of mental deterioration in many advanced AIDS patients with brain infections. HIV drugs control infections in the body, but they don’t cross the blood brain barrier.
Miss doesn’t feel like playing nice today so getting her cleaned up is a task. She doesn’t want to change out of her pajamas that are stained from breakfast and she insists on trying to get up and walk by herself. She’s able to stand up on her own, but she knows she can’t walk around. Finally after exerting herself into a sweat, she gives. She lets me get her dressed after I tempt her with lotion on her legs, arms, and back. Lotion does the trick every time. Most patients crave the feeling of being touched by another person. They’re bodies are so ravaged by AIDS that it has been awhile since anyone has touched them.
After I get Miss lotioned up, wig combed and on just right, I put on her underwear with butt pads over her diaper. She hates how skinny she’s gotten and wants her butt to look bigger. She told me that she used to have a “great ass” but the wasting took it from her. Ahhhh those heartbreaking moments of clarity, they dig a little out of you each and every time. Finally ready, I get her in a wheelchair and take her to the living room to watch TV so I can get her room cleaned. Bizzle and I worked on it together. We both work fast, patient’s room done, clean sheets, swept, mopped, surfaces sanitized in no time.
While we were cleaning the room the food bank drops off a truckload of food. No exaggeration, a huge truckload of food. The kitchen had boxes stacked everywhere and all of it needed to be put away.
AND the phone was ringing nonstop.
AND the doorbell kept ringing.
AND the pipe in the nurse’s station busted leaking water everywhere.
Yeah, Thursday was hectic but everything got done. The phone and doorbell got answered. The busted pipe got fixed. The patients were showered, dressed, breakfast and lunch got made (not by me) and all the patients ate. The food from the food bank got put away (somehow??) and I was still able to spend time with the patients, outside of showering and dressing.
I spent time with a patient that I've grown close to and got him out of bed. He’s really particular about his looks. He hates going to the living room looking less then perfect, so if I don’t take the time to get him ready he’ll just stay in bed all day. I’ve seen pictures of him before the lesion scarred his face and body. He was a handsome boy, it’s hard for him to look the way he does now, and he’s not the easiest patient attitude wise. BUT I’ve developed a soft spot for him. I make it a point to spend time with him, plus he’s in the room of a recently departed resident that really touched me. How can I not try harder? His life and death taught me so much about humility and grace.
So Thursday, it was finally over and I was sitting on the patio with the nurse/ team leader who managed to stay calm when Bizzle and I decided that we were going to do a bed transfer on a patient that we had NO business even trying……. to the rescue the nurse came, although he snapped at us a little, but we totally deserved it. Talk about biting off more than you can chew?? We were talking about the craziness of the day and how we managed to pull it off.
It doesn’t really matter why we volunteer, the point is we’re all needed. All of us make a difference. Like the volunteer who was just stopping in to drop something off but got stuck cleaning up the mess from the busted pipe.
Thurday. Thursday. Thursday. I didn’t even get to eat my bagel from Starbucks.
A day in the life of a volunteer varies from volunteer to volunteer. We each have different reasons for being there that drives us in our work. Some volunteers are there for personal reasons, they’ve lost someone they loved to AIDS, and choose the hospice as their alter. Some are affiliated with different organizations or churches. Bizzle is a JVC (Jesuit Volunteer Corp) and we have nursing students that are always running around. I don’t know everyone’s story, but I do know that everyone is there for a reason. Some deeply personal and others purely professional, but we’re all there for a reason.
The last shift I worked was Thursday. I picked up Bizzle on my way in and we made our usual stop at Starbucks, soy ice coffee for her, regular coffee and a bagel for me. We sped down the street with the windows down and the sunroof open singing along to The Beatles - Let It Be. It was one of those rare perfect weather days, sunny and breezy with no humidity that only happens before and after winter.
Every shift starts with a brief meeting that goes over every patient, what they need, and what needs to get done. When we walked in on Thursday, we didn’t need a meeting to tell us that it was going to be a crazy day.
The house changes with the patients, new patients always move the house in different directions. Sometimes you have easy going, independent patients that allow you to do what’s necessary with ease, AND sometimes you don’t. Sometimes you have patients that require a lot more effort. I don’t mean effort in a patient care way. I mean effort in a bite my tongue and count to 10 way.
So back to Thursday.
We walk in and it’s immediate Miss. Her diaper needs changing and she needs to get out of her pajamas and into day clothes. She's a hard one, but I like her. Actually, I like her a lot. She requires an extreme amount of patience; she’s feisty and often forgets what she’s doing and who you are. She’s always telling me stuff that we did together (in her head), and asking me to go to on some random trip with her. I’ve noticed that type of mental deterioration in many advanced AIDS patients with brain infections. HIV drugs control infections in the body, but they don’t cross the blood brain barrier.
Miss doesn’t feel like playing nice today so getting her cleaned up is a task. She doesn’t want to change out of her pajamas that are stained from breakfast and she insists on trying to get up and walk by herself. She’s able to stand up on her own, but she knows she can’t walk around. Finally after exerting herself into a sweat, she gives. She lets me get her dressed after I tempt her with lotion on her legs, arms, and back. Lotion does the trick every time. Most patients crave the feeling of being touched by another person. They’re bodies are so ravaged by AIDS that it has been awhile since anyone has touched them.
After I get Miss lotioned up, wig combed and on just right, I put on her underwear with butt pads over her diaper. She hates how skinny she’s gotten and wants her butt to look bigger. She told me that she used to have a “great ass” but the wasting took it from her. Ahhhh those heartbreaking moments of clarity, they dig a little out of you each and every time. Finally ready, I get her in a wheelchair and take her to the living room to watch TV so I can get her room cleaned. Bizzle and I worked on it together. We both work fast, patient’s room done, clean sheets, swept, mopped, surfaces sanitized in no time.
While we were cleaning the room the food bank drops off a truckload of food. No exaggeration, a huge truckload of food. The kitchen had boxes stacked everywhere and all of it needed to be put away.
AND the phone was ringing nonstop.
AND the doorbell kept ringing.
AND the pipe in the nurse’s station busted leaking water everywhere.
Yeah, Thursday was hectic but everything got done. The phone and doorbell got answered. The busted pipe got fixed. The patients were showered, dressed, breakfast and lunch got made (not by me) and all the patients ate. The food from the food bank got put away (somehow??) and I was still able to spend time with the patients, outside of showering and dressing.
I spent time with a patient that I've grown close to and got him out of bed. He’s really particular about his looks. He hates going to the living room looking less then perfect, so if I don’t take the time to get him ready he’ll just stay in bed all day. I’ve seen pictures of him before the lesion scarred his face and body. He was a handsome boy, it’s hard for him to look the way he does now, and he’s not the easiest patient attitude wise. BUT I’ve developed a soft spot for him. I make it a point to spend time with him, plus he’s in the room of a recently departed resident that really touched me. How can I not try harder? His life and death taught me so much about humility and grace.
So Thursday, it was finally over and I was sitting on the patio with the nurse/ team leader who managed to stay calm when Bizzle and I decided that we were going to do a bed transfer on a patient that we had NO business even trying……. to the rescue the nurse came, although he snapped at us a little, but we totally deserved it. Talk about biting off more than you can chew?? We were talking about the craziness of the day and how we managed to pull it off.
It doesn’t really matter why we volunteer, the point is we’re all needed. All of us make a difference. Like the volunteer who was just stopping in to drop something off but got stuck cleaning up the mess from the busted pipe.
Thurday. Thursday. Thursday. I didn’t even get to eat my bagel from Starbucks.
Lessons (edited and re-posted)
(Written when I first began volunteering, edited to meet proper rules and guidelines)
He came to the hospice as a 30 day respite patient, he was addicted to crack and had AIDS. During his first couple days at the hospice he was very weak, couldn’t get out of bed without assistance and needed a wheelchair to get anywhere. Gradually, he regained some of his strength and was able to shower standing up with assistance and walk with the aid of a walker. He started to leave his bed and watch TV in the main living room and eat his meals at the table. I remember one day at the end of my shift, he was walking around the house by himself. He slipped on his sunglasses and walked outside. He still had a couple of weeks before his 30 days were up, but he was doing a hell of a lot better then when he was first brought in.
He wasn’t my favorite patient. His eyes were unreadable and he was distant, cold. There was something remote about him, something that at times made me nervous. Taking care of him didn’t come as easy as it usually did with the other patients. I was polite, as he always was, but I felt uncomfortable showering him alone and getting him dressed. So, when I heard that he had left the hospice before his 30 days (and right after he got his check) I didn’t give it much thought. Until he came back, the day that Ms. began actively dying, when I sat in her room praying and hoping that she would hold on until her family got there, and he showed up at the door. Days after he left with his check.
He came in assisted by his partner. He looked worse than he did the first time he came to the house. So began the process of admitting him yet again. This time as a hospice patient, meaning he couldn’t leave the house again until his death. That was a crazy day, with Ms. barely breathing and her family in and out. Helping them with their grief, I felt a little resentment towards him. He was taking my time away from Ms. I felt like we worked so hard to get him better and as soon as he was able he left. No thank you, no goodbye. It was all about the pipe.
That resentment carried over to the following week when I had to help bathe him since he could no longer stand by himself. He was so much thinner, his body was a mess with sores and scrapes and he was back to being bed bound. My patience was very much tested with him. I treated him with kindness and consideration because regardless he was in pain and he was closer to death then before. My thoughts were my own and he would never know them. All that mattered was making him as comfortable as possible. I brought him ice cream with a smile, but my heart was hardened.
The next week, as I drove over to the hospice, I decided that I had to try harder. He was sick, not only from AIDS, but also from his addiction. I had no right to judge him, his mistakes, or his weakness. I began my shift by sitting with him. He wasn’t doing well and his family and partner had been called. I sat in the chair by his bed and held his hand. I read to him an article from the paper, an excerpt from Joel Osteen’s book on learning to live in peace with ourselves. As I got to the final paragraph on not condemning ourselves for our past mistakes and letting go, He took one long breath and then stopped.
He died. With me sitting beside him. Reading him an article on self forgiveness.
I kept busy the rest of the day. The steady rhythm of cleaning, changing bed linen and taking care of the other patients kept me from getting too much inside my head. When I got into my car to drive home everything settled. I bypassed the freeway and took the long way home, both hands on the steering wheel, almost comatose. I pulled into my garage, peeled off my clothes and threw them in the washer. I climbed the stairs and got into a scalding hot shower. I tried to lie down and rest, but thoughts of him kept buzzing in my head, I knew that my peace would not come until I wrote it down and let it go.
So, to you Sir I say.
Your life and death taught me two lessons. Never judge, and at the end everyone needs someone to hold their hand. No one wants to die alone. Thank you for letting me be that person.
May you rest in peace……and may I have dreamless sleep.
.
He came to the hospice as a 30 day respite patient, he was addicted to crack and had AIDS. During his first couple days at the hospice he was very weak, couldn’t get out of bed without assistance and needed a wheelchair to get anywhere. Gradually, he regained some of his strength and was able to shower standing up with assistance and walk with the aid of a walker. He started to leave his bed and watch TV in the main living room and eat his meals at the table. I remember one day at the end of my shift, he was walking around the house by himself. He slipped on his sunglasses and walked outside. He still had a couple of weeks before his 30 days were up, but he was doing a hell of a lot better then when he was first brought in.
He wasn’t my favorite patient. His eyes were unreadable and he was distant, cold. There was something remote about him, something that at times made me nervous. Taking care of him didn’t come as easy as it usually did with the other patients. I was polite, as he always was, but I felt uncomfortable showering him alone and getting him dressed. So, when I heard that he had left the hospice before his 30 days (and right after he got his check) I didn’t give it much thought. Until he came back, the day that Ms. began actively dying, when I sat in her room praying and hoping that she would hold on until her family got there, and he showed up at the door. Days after he left with his check.
He came in assisted by his partner. He looked worse than he did the first time he came to the house. So began the process of admitting him yet again. This time as a hospice patient, meaning he couldn’t leave the house again until his death. That was a crazy day, with Ms. barely breathing and her family in and out. Helping them with their grief, I felt a little resentment towards him. He was taking my time away from Ms. I felt like we worked so hard to get him better and as soon as he was able he left. No thank you, no goodbye. It was all about the pipe.
That resentment carried over to the following week when I had to help bathe him since he could no longer stand by himself. He was so much thinner, his body was a mess with sores and scrapes and he was back to being bed bound. My patience was very much tested with him. I treated him with kindness and consideration because regardless he was in pain and he was closer to death then before. My thoughts were my own and he would never know them. All that mattered was making him as comfortable as possible. I brought him ice cream with a smile, but my heart was hardened.
The next week, as I drove over to the hospice, I decided that I had to try harder. He was sick, not only from AIDS, but also from his addiction. I had no right to judge him, his mistakes, or his weakness. I began my shift by sitting with him. He wasn’t doing well and his family and partner had been called. I sat in the chair by his bed and held his hand. I read to him an article from the paper, an excerpt from Joel Osteen’s book on learning to live in peace with ourselves. As I got to the final paragraph on not condemning ourselves for our past mistakes and letting go, He took one long breath and then stopped.
He died. With me sitting beside him. Reading him an article on self forgiveness.
I kept busy the rest of the day. The steady rhythm of cleaning, changing bed linen and taking care of the other patients kept me from getting too much inside my head. When I got into my car to drive home everything settled. I bypassed the freeway and took the long way home, both hands on the steering wheel, almost comatose. I pulled into my garage, peeled off my clothes and threw them in the washer. I climbed the stairs and got into a scalding hot shower. I tried to lie down and rest, but thoughts of him kept buzzing in my head, I knew that my peace would not come until I wrote it down and let it go.
So, to you Sir I say.
Your life and death taught me two lessons. Never judge, and at the end everyone needs someone to hold their hand. No one wants to die alone. Thank you for letting me be that person.
May you rest in peace……and may I have dreamless sleep.
.
Tuesday, March 11, 2008
Linger
So, things at the hospice?
Pretty much the same. The residents have remained, they decline, bounce back, decline further, rally for a day or two, and then decline again. It’s a constant merry go round, baited breath, what’s gonna happen next. But they’re all hanging on, clinging to every minute, every second, some better then others.
It’s been a long couple of months and I’m a little worn out. I think, maybe, a lot worn out. It’s hard to comprehend, this slow, long, death.
I keep waiting for the inevitable, and it’s the waiting rather than the inevitable that is invading and bleeding into other aspects of my life. I worry when I leave, that this may be the last goodbye, and part of me wants it to be.
How much suffering before it is enough? How much can a person endure when the ending is already written? I used to believe in miracles, and you know what?
I still do!
So fight, rally, cling. Sunrise and sunset awaits to console you when all else is hidden and lost in the clouds of confusion. Unfinished.
Pretty much the same. The residents have remained, they decline, bounce back, decline further, rally for a day or two, and then decline again. It’s a constant merry go round, baited breath, what’s gonna happen next. But they’re all hanging on, clinging to every minute, every second, some better then others.
It’s been a long couple of months and I’m a little worn out. I think, maybe, a lot worn out. It’s hard to comprehend, this slow, long, death.
I keep waiting for the inevitable, and it’s the waiting rather than the inevitable that is invading and bleeding into other aspects of my life. I worry when I leave, that this may be the last goodbye, and part of me wants it to be.
How much suffering before it is enough? How much can a person endure when the ending is already written? I used to believe in miracles, and you know what?
I still do!
So fight, rally, cling. Sunrise and sunset awaits to console you when all else is hidden and lost in the clouds of confusion. Unfinished.
Tuesday, March 4, 2008
Unravel
Today, before I left the hospice, I went to his room, I held his hand and I said my grandmother’s prayer, Psalm 23.
Then I went to his room, held his hand, and said my grandmother’s prayer, Psalm 23.
Then, finally, I went to his room, held his hand, and said my grandmother’s prayer, Psalm 23.
My way of saying goodbye.
All three of them, soon leaving, it was not the best of days.
Never forget.
Then I went to his room, held his hand, and said my grandmother’s prayer, Psalm 23.
Then, finally, I went to his room, held his hand, and said my grandmother’s prayer, Psalm 23.
My way of saying goodbye.
All three of them, soon leaving, it was not the best of days.
Never forget.
Monday, March 3, 2008
Starburst and Skittles
“It’ll be a nasty trick I played on you” said the Little Prince at the end of the book before he leaves to return to his own small planet.
I feel this way about some of the residents at the hospice, especially the ones that have been there awhile. It is a nasty trick they’ve played on me, unwittingly allowing me to get close, to be tamed, and then leaving.
I read from The Little Prince last week to a resident who has begun his slow descent. I used to tease and joke with him and now I wait, holding my breath, waiting for that phone call saying "he is no more."
It is a hard thing to watch. Every time I walked into his room and saw him lying in his bed that engulfed his small too skinny body, all that he has endured, all that he has not lived, ached in me.
Young, (too young to be dying so harshly) alone, and scared, it’s the unasked question that hovers in his eyes that makes me wince. “Is this it?” Wanting to know if this is the end, but too sick to ask….Or maybe too scared of the answer.
All I could do was sit on his bed and gently caress his face, neck, arm, and then hold his hand, returning his squeeze of my hand by holding on tighter.
It is a nasty trick…..
I feel this way about some of the residents at the hospice, especially the ones that have been there awhile. It is a nasty trick they’ve played on me, unwittingly allowing me to get close, to be tamed, and then leaving.
I read from The Little Prince last week to a resident who has begun his slow descent. I used to tease and joke with him and now I wait, holding my breath, waiting for that phone call saying "he is no more."
It is a hard thing to watch. Every time I walked into his room and saw him lying in his bed that engulfed his small too skinny body, all that he has endured, all that he has not lived, ached in me.
Young, (too young to be dying so harshly) alone, and scared, it’s the unasked question that hovers in his eyes that makes me wince. “Is this it?” Wanting to know if this is the end, but too sick to ask….Or maybe too scared of the answer.
All I could do was sit on his bed and gently caress his face, neck, arm, and then hold his hand, returning his squeeze of my hand by holding on tighter.
It is a nasty trick…..
Subscribe to:
Posts (Atom)
