Hospice

Yesterday was my first day to make calls on behalf of Hospice. Before we're set free to make calls on our own, we have to make calls in front of the bereavement counselor. I was nervous even though I'd had hours of training on top of all of my Hospice experience. I knew I'd be fine when alone, but there's something about being listened to by a pro that scares me. It sort of reminded me of how nervous I used to get at my piano recitals.

I had twelve years of piano lessons and was used to playing in front of large crowds at county fairs, malls, restaurants, etc., but the piano recitals always got to me. I hated them because I knew I'd be playing in front of professionals.

The counselor handed me my first case file. I looked it over and read the history of the patient and looked for any notes written by the Hospice workers to see if there was anything that might be an issue. There were notes in the file about an emotionally unstable family member, and I brought that to the counselor's attention. She asked if I felt comfortable in making the call, or if I wanted to move on to something less complicated. I decided to go ahead and make the calls.

My first call was to the wife of the deceased. As I pushed the buttons on the phone, I felt very unsure of myself. What if I screw this up? What if I say something stupid? This woman has lost her husband, and I take that responsibility seriously.

She answered the phone and I told her my name and told her that I was a volunteer with [name of my Hospice org] Hospice. My first mission is to ask if she's received the mailings and ask if she had any questions about them. Then there is a list of things that I need to try to work into the conversation to get a feel for where she is in the grieving process and how she's doing in general. It needs to be conversational, so it doesn't sound like we're going through a checklist.

About two minutes into the conversation, I relaxed. This was a lovely sounding 84 year old woman who was so happy to hear from me. She shared with me how her life has been since the death of her husband and I listened. I suddenly quit being a Hospice volunteer, and resumed my normal personna as a listener. As I was listening to her talk, I'd look over at the counselor every now and again just to get confirmation that I was saying the right things. She kept mouthing "wow" as the conversation got longer and longer. I ended up talking to this wonderful lady for almost a half an hour and I could tell in the end that it was good for her to talk to someone. It was good for me too, because I felt like I was doing something important.

After I hung up the phone, the counselor told me that it was an excellent call and that I sounded very affirming and caring. She said that she was impressed that this lady shared so much with me. Normally, the calls are maybe 10 minutes long. Mine was a half an hour.

Next was the son. It was unclear whether I was calling a cell phone, work phone, or home phone, so I was nervous about that. I planned in my head what I'd say if it was work, because certainly I don't want to put someone in a position of talking about their grief while at work. Fortunately it was his home, and he was there. Again, my nervousness melted away as I talked to him and I just became me, and listened just as I would to anyone in my own life. This call was a bit more complicated, and it had to do with the unstable family member. He shared with me that this family member has been emotionally abusive to their mother and to him. He was also worried about his mother's physical safety. I was writing notes to the counselor as he was telling me this information so she could help me in what to say to him. We ended up writing notes back and forth while he talked to me and I would pass along information that the counselor wanted me to share with him. Eventually, I asked him if it would be OK for her to call him next week so she could help them with the situation. He was grateful for that offer. This call lasted 20 minutes.

Again, the counselor told me that this is not the norm. That I shouldn't expect that people will be talking to me and giving me all of this information. Apparently she doesn't know my reputation.

That is all the time I had alloted myself, because I was basically using my lunch hour (+) to do this last bit of my training. I will be going in on Saturdays to make the calls as soon as they can get the logistics worked out.

It felt good. Really good. I was so energized after this hour and felt once again that this is what I am supposed to be doing with my life. Whether it's as a grief volunteer or maybe later as a professional grief counselor, I know for certain that this is what I'm supposed to be doing.

My husband's father passed away about four hours ago. You may be wondering why I'm blogging about it and not sitting by my husband's side.

....I wish I could be by his side right now.

My husband left on a business trip this morning. He's in another state and can't get home until tomorrow morning. It's a small state and the airport is closed for the night. He missed the last flight out by 15 minutes. So, my sweet husband is in a strange city, left to deal with the passing of his dad all by himself.

I'm heartbroken for him. I want to hold him and comfort him but I can't. I literally ache for him right now. His dad was so special to him.

His dad was a special man to everyone that knew him. I can't begin to count the number of times I've heard people say "he's my hero" about this man. But his biggest fan was his son; my husband.

This has been a strange journey for me, a Hospice volunteer. I've never experienced death up close and personal, except through my Hospice volunteer experiences. My very special Aunt died suddenly in her sleep which is a whole different experience. And it was also an experience that I deal with a lot better. It's more difficult for me to see people I love in pain than to experience it myself.

My husband's dad didn't die suddenly; at least not until the end. In respect for my husband's privacy I won't go into detail, but being a Hospice volunteer did not give me any advantages. It was almost a disadvantage for me because I saw things I didn't want to see. I knew things I didn't want to know. I knew things my husband's family didn't want to know. On one hand I wanted to tell my husband what I felt was happening because I didn't want him to be sideswiped. On the other hand, I'm not a doctor and I am not an expert on dying. After all, I could have been wrong about what I saw. So I kept quiet and had to watch it all play out.

I am not sure that it was a blessing in disguise, but my father-in-law didn't realize how sick he was until he received a questionnaire in the mail from his medical center asking if he felt his doctor was dealing with his fatal illness properly (I'm paraphrasing.) My father-in-law was surprised to hear his illness described in this manner. He never really thought of fact that he had a fatal illness. This happened in December. I was appalled that he had to find out in this way.

The next time he went to the doctor, he was told, "Well, I assumed you knew". Then gave him a prognosis of 2-3 years. My father-in-law told us all that he 'knew' the doctor was just being cautious and told us all that he felt he had another 10 years left.

I knew better, but I gave him the respect and dignity of having his own reality.

Although my husband saw his dad just about every day after that, I only visited on weekends. About three weeks ago, I saw signs of end-stage. This is where I don't like being a Hospice volunteer. I saw things that nobody around me saw. I wrote an email the next day suggesting that they ask their doctor about getting a visiting nurse or something, "just to help out". I was given an emphatic "NO!". I beat myself up for days about that. It wasn't up to me to try to change their reality. Two days later they went to the doctor and the prognosis was moved up to "weeks, maybe months". Then the doctor suggested Hospice. They gave him the same answer as they gave me.

Ironically, this day was the same day I finished my grief and bereavement training with Hospice. I have to wonder about the timing in all of this. This journey I chose for myself would start right here in my own home.

We visited two weekends ago and I knew that he'd not see the end of February. This is really hard information to keep to oneself. Yet again, my suspicions were confirmed the following Monday when they went back to the doctor. His prognosis was moved up to "days, maybe weeks". The doctor insisted on Hospice, and they finally agreed.

It's almost as if once he found out that he was dying, he let go. He lost his will.

We saw him again on Saturday and I knew he'd be gone within days.

Again, I was right. Today was the day.

So, all this time, unless asked, I never shared what I knew with my husband or his father (or step-mother), but I did share with my husband's mother. I shared all of it with her. There were days that we wrote email to each other at least twice a day. It's been so wonderful to have her there to listen to me and assure me that I was doing the right things for my husband. I needed to hear that from someone who knows and loves my husband and who also still loves his father that I was taking care of him in the best way possible.

I also had *my* Hospice services (the organization I volunteer for) to help me with advice during a few sticky situations. I felt as if I was way over my head at times because I had to witness all of this going on around me and not say anything. They helped me by practicing conversations with me, they gave me ways that I could say things and not offend or change people's realities.

So, now that I've cleaned the house from top to bottom and I've thrown all of this out onto my blog, I feel helpless. I'm not *doing*.

And my husband is alone.

Our company has changed insurance carriers, and my current doctor is not one of the approved physicians. Since I have a liver disorder, it's important that I have a good doctor that understands the importance of regular CT scans, ultrasounds and blood work.

So, I'm doing a meet and greet with a new doctor on Wednesday. They have a website, so I decided to look up his bio. In it, I read, "I believe it is important that we take care of ourselves through fitness and healthy eating. I enjoy discussing exercise with my patients.... "



I liked my old doctor. She was chubby too, and realized that I have a mirror and a brain and know that I should lose weight and exercise. I have a feeling I'm gonna get lectured. Gah!!!

When I read that bio, I was reminded of a Hospice patient of mine. Toward the end, she was rarely awake. I sat in the room with her while her husband was out running errands. Toward the end, she was very disoriented when she'd wake up and would have very few lucid moments. That is what makes this story so funny.

The ONE lucid moment she had was when she decided to give me diet tips. It went something like this:

An hour of snore snore, mumble mumble, then she looked at me and very clearly said , "Dear, maybe if you used a little less salt, that might take care of the weight problem. Or, maybe eat less meat". snore snore, mumble mumble.

I still giggle thinking about it.

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 The Hubs. 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.