Hospice

I haven't posted much about Hospice in my blog, but I think that will change soon. Prior to moving in with hubby, I was a patient volunteer. When I was doing home visits, it was my job to be with the patient while their caregiver went out and ran errands, visited friends, etc. I found that my most rewarding times were when the caregiver would just sit and talk with me and let me give them a shoulder or an ear. My patients were asleep 90% of the time, so I didn't have a whole lot of interaction with them besides physical care. I did have a lot of interaction with the families though.

I started in-patient care after having a couple of bad experiences (believe it or not, bad experiences didn't include someone dying in my presence). One was an 80 year old husband who was eager to, shall we say, replace his wife. I should have known something was up, when the social worker told me I was the second volunteer with this family, and then asked me to tell her if the husband ever became 'inappropriate'. The other was a patient who lit her oxygen tube on fire thinking it was a cigarette. Of course, it blew up in her face. I wasn't there at the time, but it scared me to think that this sort of thing might happen when I was alone with the patient. So, I went to in-patient care.

I had some wonderful experiences there and met some wonderful people. Generally, the patients were there because their family had to be somewhere for a few days. The patients I met there were actually more alert, so I was able to talk to them. Generally there were about four patients in the center at one times, so I was able to visit more than one patient in a day. One of my favorite things to do is to listen to people's stories. Especially the older generation. I'm fascinated by their experiences and the attitudes and thoughts of people decades older than me. I found it most difficult to talk to those that were my age, or possibly younger. It made me feel guilty that I'm not more careful with my body (diet and exercise... ). It also made me realize how fragile life is and reminded me that I'm not immortal.

People have asked me how I keep from crying when I'm talking to those that are dying. Especially when they're in a considerable amount of pain. It's very difficult at times, and honestly, I'm not always successful. But the trick for me is something I was told in one of my Hospice classes. Whenever you start to cry, you put OTHER people in a position of feeling that they need to comfort you. I'm the sort of person that when I give service to someone, I give myself 100%. Keeping that bit of information tucked away in the back of my head has been my little 'parlor' trick.

I had to give up Hospice for a couple of years after I moved in with BJ. For one, the Hospice center was 90 minutes away; and two, I was planning a wedding and living in a new city, etc. About six months ago, I got the itch again but had to wait for the training to start up. Even though I had been a volunteer for over two years, it was a new hospital and I had to learn it their way (very different training and attitudes in this new Hospice environment, by the way).

I finished my training in October, but had to wait until this month to get the training to do what I've wanted to do for quite a while. That's grief and bereavement. I'll be calling families who have lost someone and seeing how they are doing. After about six months of that, I'll be able to help facilitate the weekly group counseling sessions.

I feel that, if one believes in callings, this really is my calling. I've mentioned before that I'm one of those people that even strangers will tell their life stories to. I've been told that I have a very comforting presence and that after talking with me, people always feel lighter. It's an interesting feeling for me, and I can't really place my finger on it. But when I connect with someone, I CONNECT. The rest of my life completely dissapears and I am 100% with that person at that moment. Believe it or not, I also leave feeling lighter even if the discussion we've had is very heavy.

I think that's why I avoid 'emotional vampires'. There's something about my personality that can detect that sort of person almost immediately. Once I detect that in a person, I pull away immediately and permanently. Maybe I've been gifted with that sense so I'm able to reserve my energy for those that really need me.

Anyway, I'm in training every Monday this month then I get to start this new journey. I'm sure it sounds strange to read that someone is excited to talk to grieving people, but I really am. Just like I feel that I'm at the pinnacle of my career, I feel that this is the pinnacle of my life.

Tonight I volunteered to help at a Hospice seminar. The seminar was to give people skills to cope through the holidays after losing someone. The first part of this volunteer activity was questionable in regard to my safety, but the rest of the evening was very rewarding. My job was to help people find their way to the conference center. Doesn't sound too bad, right?

Wrong! I was banking on Karma being on my side for doing good works tonight. I was in a very questionable part of town, at a motel, in the dark, standing in the parking lot by myself. When people would pull into the motel parking lot, I'd go up to their car if they looked lost and direct them to go down an alley to the conference center. This involved trust between two parties; the little old ladies seeing someone coming up to their car with a flashlight; and me, hoping that the people in the car weren't going to pull me in and drive off with me. Thankfully, I'm here to tell the story and no little old ladies were harmed by me or my flashlight.

Once I was finished directing traffic, I went to the conference center and took my seat. I was amazed to see so many people attending this conference. I'd guess the number of people in the audience to be somewhere between 150 and 200 people. 150 to 200 people in emotional pain. It was almost palpable.

The second speaker asked people to raise their hand if they were experiencing grief for categories that she went on to mention. Parents (raise your hand). Siblings (raise your hand). Spouse (raise your hand). Suddenly my heart lurched. It was almost as if a freight train had hit me. I looked around the room and saw many people that had lost their spouse this year. Some of them were my age. Some of them younger.

I've been very cavilier about that topic in recent conversations. Yes, I adore my husband- but I know that I'd go on. I've lived for 44 years without him. I'm not his siamese twin. I could live after him. Or so I thought. Somehow, seeing these people raise their hands brought a bunch of feelings to the surface. It's as if while raising their hands, they were throwing their loneliness out into the room. I could feel it. Worse, I could imagine it.

Then, "raise your hand if you've lost a child". Boom! I was hit again. I looked around the room and saw grieving parent's who have lost children. Based on their age, I could surmise that some lost adult children, and some lost probably very young children. I internalized that as well. What if? That would rip me to my very core.

During intermission, I wandered around the room and mingled with these people who have lost loved ones. They seemed almost desperate to tell their story. I wanted to cry right along with them. It was if I was a sponge soaking up all of the emotion in the room.

The end of the seminar provided us with a rememberance ritual. We lit candles and gave thanks for the people that we've loved who have passed on. We also acknowledged the people who would grieve upon our death. It was lovely and thought provoking.

There were a lot of tears in the room tonight, many of which were mine. Some people might wonder why I'd want to subject myself to such raw emotion; wonder why this experience cements even more my desire to serve in this part of Hospice. I honestly don't know what pulls me here. I just know that it's where I belong.

During my last Hospice experience I learned that the dying have a lot more control over timing than we give them credit for. I've heard stories about people who wanted to die alone, so they waited until everyone who stood vigil over them for days were out of the room (using the bathroom, going to the vending machine 'really quick', etc.), and choose to die at that moment. I've heard stories of people who waited until their loved one was able to make it from across the states. The event that happened last Thursday brings a whole new meaning to what I've learned.

Please know that I'm referring to the patient as "the patient" out of respect for their privacy; not as a sign that I think of the patient as a non-person. I will never write anything that will come anywhere near invading our patient's privacy, therefore, they will always be "the patient" with very sketchy details.

On to the story...

Last Thursday night, our last Hospice training session, a Hospice team was brought in to talk to us about a patient who was currently in Hospice. Each patient is assigned a team of four people; a volunteer, a registered nurse, a social worker and a non-denominational minister. The four people from this patient's team were there to talk to us about each role in caring for the patient.

Prior to talking to us, we were asked to listen to a piece of music from the last Lord of the Rings movie and symbolically bring that patient into the room with us to affirm his life.

The volunteer commented right away that this piece of music was perfect, because the patient loved the water and sailing. Of course, the lyrics are also quite symbolic of dying and going to another place.

Lay down
Your sweet and weary head
Night is falling
You've come to journey's end
Sleep now
And dream of the ones who came before
They are calling
From across the distant shore...


What can you see
On the horizon?
Why do the white gulls call?
Across the sea
A pale moon rises
The ships have come to carry you home

Friday morning, the Hospice center got an announcement that the patient died at the exact time we were completing our ritual to welcome this person into our thoughts. That sent me a pretty powerful message; something that seems to happen to me frequently with my Hospice work. This is one of the reasons I love Hospice so much. I get more out of it than I could ever give.

Tonight was the second Hospice training session. A nurse came in and talked to the class about what dying looks like. As she discussed the different steps, I would think about some of my past patients and how they were in that particular place in their journey. I could tell by some of the questions that people asked in the class that a lot were afraid that someone would die while they were alone with them. That never happened to me, and I'm glad.

At the end of the class we did an exercise, a very enlightening one. We were given four sets of five small pieces of paper. On the first set of five we were to write down possessions we have that we like; the second set was supposed to be things we value in ourselves; the third was supposed to be hobbies or things we do that we enjoy; and the last set of five were relationships.

Mine were (in no particular order):
Possessions- car, piano, espresso maker, wedding ring, music collection
Things I value in me- my independent nature, I'm happy, I like to serve others, I easily show love, my intelligence
Hobbies/things I enjoy doing- graphic work, internet research, hiking, my job (yes, really!), music
People- My husband, my sister, son #1, son#2, and my brother

Then soft music came on and the lights were dimmed. We were asked to listen to a story, and asked to place ourselves as the main character of the story. We followed this character as she found a lump that shouldn't be there; found out the lump was cancer; went through treatments; treatments stopping because they were not working; started actively dying; and finally the people with her when she died.

As we were told this story, we'd be told during certain phases to give up random numbers of those slips of paper. We were not given a category that we had to choose from. Just take the number of slips that we were instructed to pick and crumple them and throw them in the middle of the floor. This was to represent how the person feels as she's dying and starts losing things important to her. Of course, my last five were the people in my life. The two other things I had a hard time giving up were my independence and my ability to love.

It was difficult to not be absorbed by this exercise; to not think about the "what if's".

My last two slips of paper were my sister and my husband. Then I had to choose. Believe it or not, I chose my sister. I am not going to defend my decision, even though I know that my husband is supposed to come first. Or should, anyway. I couldn't love or adore my husband any more than I do, and it has nothing to do with any sort of relationship problems; because frankly I think we're pretty perfect. It has more to do with the trust and deep bond I have with my sister. She knows me like no other, and I feel that she accepts every piece of me just as I am - just as I do with her. I really do believe that she and I are soul mates. My husband knows the bond with my sister, and I think he'd understand. Thankfully, it's a choice I'll never have to make.

Lastly, we were asked to imagine our body laying in the bed after we die. We're looking down on it and we're asked to imagine who is in the room with us. It was my husband, my sons, Ranger Mike and my sister.

Seeing all of the crumpled papers on the floor really had quite an impact. There are 20 people in my class, and those are a lot of dreams and passions crumpled up on the floor. We were told to stand in a circle around those things we "lost" and hold hands and think about those that we are about to serve. It was a great exercise.

The exercise reminded me of my first hospice patient. She held tight to the same things I hold dear. Family, independence and service to others. I met her while she was still able to get up and around. She didn't have a lot of energy, so she used me as her conduit to do things for her family. She'd have me cook dinner for her husband EXACTLY the way she cooked for him. It was important to her. She supervised me cleaning up her kitchen and putting things away EXACTLY like she would have. Eventually, she didn't have the energy to even do that and she started giving up those things; just like those crumpled up pieces of paper. She did it with grace and I hope that I'll be able to do the same when my time comes.

Not very risible tonight, eh?

Today was the first day of Hospice training. Even though I've done this before, I have to go through training all over again. That's OK, it never hurts to get a refresher. Prior to getting into the whole training piece, we were asked to think of a person who's spirit you'd like to have with you today. He said that that person could be alive or have passed on. The trainer lit a candle and turned off the lights and played a beautiful piece of music. My immediate thoughts went to my friend with cancer. I decided that I wanted to have her spirit with me today.

I did call her yesterday, but it was really difficult for me to pick up the phone. I'm glad that I called her, but the voice on the other end wasn't the voice I was used to hearing. I could hear that she was exhausted. I knew it wouldn't be one of those laughing types of conversations that I'm used to having with her. I'm glad that she didn't even try to pretend to have energy for me. She hasn't been able to eat for almost three weeks, so has a feeding tube. I kept the conversation brief, told her that I was thinking about her and wanted her to know that. She said she'd call me when she's back to work so we can reschedule that lunch date. I dunno.... I got a sinking feeling that this time she wouldn't be back to work. I don't know how she's made it this far. People generally don't survive ovarian cancer, especially if it's metastisized. I don't have that much of a survival instinct. I couldn't do that many years of chemo. That phone call made me very sad. But I'm glad that I did it.

So, back to the epiphany. I was sitting in the dark thinking about my friend. I kept wondering to myself why on earth it was so hard for me to reach out to her, when I'm perfectly able to do it with strangers. I'm not afraid of death or people who are dying. That's why I joined Hospice in the first place. This is something that I can do, that not many people can. When I'm with a Hospice family, I give them everything I have. It comes very easily to me. When I made my living as a singer, I wasn't nervous singing in front of perfect strangers. Didn't matter how many people were in the audience. People I know ask me to sing for them, and I flat out won't do it. The very idea petrifies me.

So, there's the pattern. It's all about making it personal. Now what?