Hospice Volunteer Training - Day Three

My final day of hospice volunteer training started with a long safety lecture all about infections and universal precautions on how to prevent them. No joke, my notes on this lecture state, "Please enclose me in a plastic bubble." Most of this lecture could be boiled down to three important words: wash your hands. At the end of the lecture, delivered by a registered nurse, we were treated to a tuberculosis test. Thank God, I didn't react to it, because I've heard dealing with the D.C. Department of Health on this matter is a pain in the arse the likes of which I've never experienced. Yes, that was my chief concern, not testing positive because I might have been exposed to TB.

The second segment focused on legal issues at the end of life, such as advanced directives, appointing a durable power of attorney, and living wills. I learned a surprising statistic: only ten percent of us die suddenly. The rest of us have a slow decline, and are likely to end up in medical situations requiring delicate decisions. I found this unit emotionally difficult, because I think that too many of those situations are game-time calls. I would find it very difficult to lay out my final wishes for a death scenario I can't even begin to imagine. Luckily, you do have the option of signing a statement in an advance directive such as, "I realize I cannot foresee everything that might happen after I can no longer decide for myself. My stated preferences are meant to guide whoever is making decisions on my behalf and my health care providers, but I authorize them to be flexible in applying these statements if they feel that doing so would be in my best interest" (that is from the Maryland Advance Directive, available here). The one immediate point I took away for myself is that I need to ask someone to be my local backup in case my husband wasn't available.

The social worker who gave the presentation on end-of-life legal issues also reminded me of the Five Wishes, a simpler way of letting people know how you'd like medical issues to be handled at the end of your life. This is valid in 40 states and the District of Columbia. Regardless of how you choose to document your end-of-life preferences, please do so, and don't wait until you think it's "time." People die at all ages, sadly.

The last unit of my hospice volunteer training was all about working with patients with dementia. I need to re-read this section of my manual, because my first hospice assignment starting next week will be with three patients with the disease. We were taught not to make demands of dementia patients that they can't handle. For example, it is less taxing on them to ask, "Do you like watching TV?" than to ask, "What is your favorite TV show?" The social worker/nurse emphasized that when working with dementia patients, you're obviously not going to be cultivating long-term relationships (I realize this is relative, since we are discussing hospice) since the patients likely won't remember you week to week. Thus, presence is key. My personal feeling about this is that if I make the life of a dementia patient at all better in the moment, then my visit is a success, so I am not overly bothered by the absence of any lasting connection with me on their part.

Finally, we had paperwork galore to fill out (like permission for the background check), as well as a tutorial about the reports we have to file within three days of seeing our clients. My perception of the 20 hour training was that they did a great job. I loved hearing from the people who do these hospice jobs, and the material was always interesting and felt relevant. I think a piece of me wanted them to do a play-by-play of every scenario you could encounter, because I crave this kind of black-and-white guidance in general. Of course, we all know that life is nuanced. You can't script encounters, and I think the way you get to be "good" at being a hospice volunteer is by doing it. I am eager to start next week and will let you know how it goes.

Suffering and Service

"To go into the dark with a light is to know the light. To know the dark, go dark. Go without sight and find that the dark, too, blooms and sings..." -- Wendell Berry

"You can argue with the way things are. You'll lose, but only 100% of the time." -- Byron Katie

The last three weeks have been immensely challenging for me. I am in the middle of a pain flare, and not my usual pain: this is a new back pain felt deep in my butt that makes it very hard to walk, shift position, or even turn over. The suspected cause is ligament laxity, which has been a constant issue for me. This laxity and the numerous aches and pains it causes is the reason I'm getting prolotherapy, a procedure in which a physician injects dextrose to tighten the ligaments. The principle behind this therapy is that you irritate the tissue initially, and then it responds by tightening up. This is the only non-surgical way to tighten a ligament (I've had surgery to do this in my ankle). My last prolo session was actually done with Platelet-Rich Plasma (PRP), in which my wizard doctor added my blood to the prolo mix to increase the inflammation factor and healing potential. Let's just say, it definitely increased the inflammation factor. There's no way to know, but there is a chance that I've had a temporary setback from the procedure. I'm at week 4 after the PRP and you typically don't see any positive effects until week 6. Often, there is a loosening before the tightening, and there is a good chance that this is what is causing my current pain.

The expectation is that this will pass, but in the mean time it is truly miserable and infuriating. I have had countless chiropractic and orthopedic adjustments, trigger point injections, and just yesterday, sacroiliac joint cortisone injections to try to lessen the pain. Drugs of any time are a joke; you may as well be giving me a placebo. So, in the meantime, I have to tough it out and give myself high doses of compassion.

You would think that with all of my issues, I would be no stranger to pain. But as a friend of mine with multiple health issues said to me earlier this week, "Whenever it's a new part of my body, I really freak out." I related to that. I know how to manage my fibromyalgia and Lyme pain, but the back pain is really frustrating. Worse than the discomfort is the impact it has on my life: walking even short distances is painful, as is bending down, like I do 100 times a day to pick up the dog, do laundry, or pick up my shoes.

The interesting lesson of this pain flare is how much service helps my spirit when nothing can soothe my body. I have been throwing myself into it as of late, volunteering many hours with a number of charities that are meaningful to me. On Thursday, I had the privilege of sitting with a very ill child who has been in the intensive care unit at the hospital for several months. I was in excruciating pain, but the truth is, I am hurting wherever I am. If I had stayed home, I definitely would have been stuck in a lot of "poor me" thinking. At the hospital, at least I was providing service for the patient and her family. Getting out of my head really helped me, probably a lot more than I was helping anyone else. One of the biggest lessons for me as a chronic pain patient is that there is a world of difference between pain and suffering. Staying at home, wallowing in my pain leads to suffering. When I am doing volunteer work, I might be in pain, but I am definitely not suffering. This insight is new to me, and is the darkness that "blooms and sings," as is so eloquently stated in the Berry poem excerpted above.

Service work gets me out of my head, and bonds me to the greater community of humanity. It also can be a good way to keep my situation in perspective. I say this not to minimize what I'm experiencing, because it really sucks. However, it is helpful to be able to hold it in the larger awareness of the suffering other people are experiencing.

First Hospice Visit

"Volunteers ... can reap many gifts depending on how fully present they are during each visit, how empty they are are of any expectations or agenda, how capable they are of accepting the individual unconditionally and how comfortable they are simply sitting in the silence. So much can be communicated without words, and in fact, quite often a patient is too tired or too weak to talk. Just the presence of a caring companion at the bedside can convey enough serenity to bring comfort and ease some of the fear and loneliness of dying." -- Mary Jo Bennett, "When Autumn Comes: Creating Compassionate Care For the Dying," p. 100

I couldn't have asked for a better patient than "Janice" to initiate me as a hospice volunteer. I was filling in for Janice's regular volunteers, who were out of town for Thanksgiving. I was nervous as I entered the nursing home to see her; so much so that the Director of Nursing said to me, "You're out of breath. Were you running?" Janice is an elderly patient dying from cancer and has no surviving family. Fortunately, she rated her pain a 0 on a scale of 0-10.

When I got to her bedside, Janice was eating and said, "I'm so glad you're here. I was beginning to get lonely." That made me feel like whatever else happened during that two hour visit, me being there made a difference to the patient. I cut up her potatoes so she could eat them. Janice told me I looked like Bette Midler, and we talked about Thanksgiving in particular, cooking in general, the weather, flowers, and other sundry things. Janice expressed her appreciation for how nice the hospice I'm volunteering for has been to her. After 45 minutes, Janice apologized and told me she needed to take a nap because the medication she takes makes her sleepy. I told her she had nothing to apologize for, and that if she's tired, she should rest. Janice woke up a few times from her nap, always smiling when she realized I was still there. Twice, she apologized again for sleeping, and worried that I was bored. I told her I had books, an iPad, and knitting, so there was no chance of me being bored. I gently woke Janice up before I left to say goodbye and see if she needed help with anything before I left.

I learned three important lessons from my first hospice visit:

A. Being there really matters. Janice said that plainly when I got there, and then her face conveyed it every time she woke up from her nap and realized she wasn't alone. How cool it was to get home and read the above-quoted passage from "When Autumn Comes" (a must for hospice volunteers), which echoes this experience, especially in the last sentence.

B. Being silent is very hard. I found myself wanting to make small talk with Janice. I give myself a "B-" in that regard. I will need to work on letting the client always initiate conversation. This gives them control over whether they want to speak or not, and especially if they are actively dying, they might not want to talk. Second, keeping my mouth shut allows them to choose the topic they want to converse about. If I was going on about Thanksgiving turkey and Janice had really wanted to talk about her fears of dying, I would have precluded that by my chatter. On the other hand, if I had forced a conversation about death and Janice wasn't interested in talking about that with me, that's not cool either. I can tell that to be a good hospice volunteer, I will need to get very comfortable being silent. Bennett's excellent guide for hospice volunteers gives several suggestions for things to do to with a silent patient, including prayer, meditation, and gently stroking the patient's forehead or hair.

C. Leave earlier than I think I need to. I was rushed getting to the nursing home, and it stressed me out. It would have been better to be there 10 minutes early so I could have relaxed and better gathered myself before visiting the client.

Visiting Janice was a pleasure, and I look forward to many more assignments as a hospice volunteer. Truly, it felt like I was doing what I was meant to do.

Hospice Volunteer Training: Day Two

"Tears fall, but why am I crying? 
After all, I'm not afraid of dying. 
Don't I believe that there never is an end?" -- Iron Maiden, "Hallowed Be Thy Name"

Day two of hospice volunteer training covered the emotional and spiritual needs of the dying. I learned that only ten percent of us will die suddenly; the rest of us will have to deal with some protracted death. Hospice believes that this dying process can be a meaningful stage of one's life and endeavors to make it so. One of the biggest take-aways from my training is to get hospice involved early, so families can take advantage of all of the services they offer. If you wait until someone is "actively dying" (really nearing the end of life), they are not going to feel up to utilizing the chaplaincy, social work, and volunteer time that can make this journey a more pleasant one. For example, we had a panel of current hospice volunteers come speak to us. I was touched by a gentleman in his 70s who said, "I try to find the thing that the patient has lost and in some way bring it back to him." For example, one of his patients loved poker, but hadn't played in years. The volunteer started playing poker with him on his twice-weekly visits, and other men from the floor of the assisted living facility joined in! I was so moved by this man's dedication.

The hospice volunteer coordinators did an excellent job with this training, and provided us many relevant articles in our large binders. The section on the emotional needs of the dying was intense, but also informative. The most powerful article, to me, was written by a doctor who lost her six year-old, Liza, to cancer. It was a beautiful illustration of how hospice care could ease this girl's death for the patient and her family. The article goes into detail about how Liza wanted to die and how thoughtful hospice care enabled that . One of our training exercises was to brainstorm about our "ideal" deaths, inasmuch as there can be such a thing. None of us is getting out of here alive, and there is a 90 percent chance that you will not die suddenly, so it's worth putting time into thinking about this, and more importantly, sharing your preferences with your loved ones. Everyone agreed the first goal was to minimize pain. Beyond that, here are my wishes:

To die at home, in bed, surrounded by close family, my best friend, and my dog(s). I would like there to be candles lit, and I would not like music (not even my beloved Iron Maiden). I would like my sheets to be clean. I will definitely want some spiritual reconciliation near the end of my consciousness: saying the viduy (confession prayer) with a rabbi whom I like, and meeting with a meditation mentor or teacher.

Other people participating in the training said they wanted music, specifically Bruce Springsteen. Some people thought less about atmospherics and more about things like ensuring there would be no family drama during their deaths, and knowing that they will have helped their daughters plan their future weddings.

We talked a lot about how to conduct oneself on a visit, such as what to talk about and how to behave. We did role-playing where we acted out different scenarios, like a patient's brother asking you out (!) or having a patient ask, "Why is this happening to me?" Social workers talked extensively about preparing yourself mentally for entering a hospice patient's home and the importance of leaving your baggage out of the visit since they have enough problems. This is a good reminder for an over-sharer like me. They even recommended specific techniques to kind of clear yourself before you enter the home and enter into a mindful presence to be of maximum service on your visit. We also discussed the importance of self-care for volunteers since this is stressful work, and the importance of healthy boundaries. We were told many times to block caller ID on our phones when we call the patient or family and certainly not to bring any patients to our homes.

To try to cultivate empathy and drive home the hospice patient's experience, the trainer conducted an exercise in which we wrote the following on 16 sticky notes: your four most valuable possessions, the four most important people to you, the four roles you value most and the four activities you most enjoy. You then laid these stickies out in front of you, and the volunteer coordinator walked around and randomly took them away from you one by one and crumpled them up. The point was to drive home the reality that hospice patients lose all of those things. Many people were deeply moved by this exercise, and one volunteer even had nightmares about it and couldn't sleep last night. However, I found it a little cheesy. I kept thinking, "My role as a wife wouldn't go away if I were in hospice, nor would I lose my wedding ring if I were dying." As for losing the ability to perform activities I enjoy, because of my debility from my serious Lyme Disease infection, I did lose the ability to do nearly all of my favorite activities, and others that aren't favorites but are critical to independence, like driving. Even though this sticky note exercise did not resonate with me, I still appreciate its message that people dying are rapidly losing control of things they hold dear.

In addition to discussing emotional needs of the dying, the second focus of the day was on their spiritual needs. One of the two hospice chaplains came and explained his job to the volunteers. He was really cool, and explained that he takes a very broad view of spirituality, which he explains to patients. For that reason, he ends up visiting with many people whom do not think of themselves as religious. Most people feel connected to something bigger than themselves, even "just" being part of a community. To this rabbi, that connection is the essence of spirituality. The rabbi brought a lot of insight into how to speak to the dying. I thought it was interesting that he often ends up working with people who are already very involved in their church or synagogue, because their own clergy people are overextended or because their minister or rabbi said, "You should view me as a generalist, and the hospice chaplain as the death specialist. Work with him, too."

Last but not least, on day two of training, we got our mandatory tuberculosis test. Ouch! It was a very long and emotionally intense day, but I felt like it did a lot to get me prepared to be a hospice volunteer.

Hospice Volunteer Training - Day One

Yesterday was my first day of training to be a hospice volunteer. It was really interesting, and I think it's going to be a very rewarding volunteer experience. Some people have asked me why I'm putting energy toward this. It sounds very cheesy, but it feels like a calling. My father died painfully of multiple myeloma, and his doctors at the Mayo Clinic referred him to hospice when he exhausted his treatment options. Unfortunately, his wife had strong cultural prejudices against hospice, and refused his admittance. I believe that hospice would have made a difference in his death. I admire the whole-family approach to hospice: the people who receive care are the hospice patient and his/her family. I also admire the hospice philosophy, which addresses the physical, emotional, social, and spiritual needs of the patient.

Unfortunately, I have a lot of recent experience with grief and dying, and I think I can put that to use being of service to hospice patients and their families. It was meaningful for me to help my father die; it felt like critically important work. My experience grieving my pregnancy losses and informally counseling other couples dealing with the same issue is another thing contributing to my desire to do hospice work.

One of the coolest things about hospice volunteer work is that it is taken very seriously by the hospice agencies: any hospice that receives Medicare funding (most of them) must fulfill five percent of patient care hours through volunteers. Therefore, Medicare requires this 20 hours of volunteer training that I am going through. I also had to provide three references and consent to a background check. Since the nurses only start visiting patients very frequently as they near death, the volunteers provide eyes and ears on the patients in between clinical visits. When I complete my training, I will be matched with a home hospice patient whom I will spend at least two hours a week with. You are there for them, so they guide the activities. Many want to be read to. Some want to sing with you, or listen to music. The volunteer coordinator was happy that I knit, because some patients want to either knit with volunteers, or watch them knit if they can no longer craft themselves. The volunteer coordinator's dad was also a hospice patient, and all he wanted to do with his volunteer was argue about politics! They match you up. 

The first day of training covered the history and philosophy of hospice. It was pretty inspiring to learn about Cecily Saunders, who founded the first hospice in London in 1967. Saunders was a nurse who was bothered that dying patients weren't getting the specialized care they needed. She recognized she wouldn't get the respect she needed to make significant changes to the system without a medical degree, so at age 33, she went to medical school.

The volunteer training covered a lot of topics, including the need to be non-judgmental, because patients and families react to dying differently, and because people run their households differently. An interesting point they brought up was patient use of marijuana. They said we can't touch it, but basically, they look the other way. Really, how cold would you have to be to call the cops because a terminally ill patient was smoking weed? If you would, you're probably not a good candidate for hospice volunteer work!

Because I have an interest in medicine, the most interesting part of the training for me yesterday was when a hospice nurse came to talk to the volunteers for an hour. She got into a lot of the clinical issues she handles and how the volunteers play into the care team. The nurse shared stories from her 20 years working in hospice, and talked about the satisfaction she gets from her job. She said that one issue she sees a lot -- especially with Jewish hospice clients -- is food issues coming up when someone is dying. It is natural for dying patients to eat and drink very little, which alarms families. Apparently, it really alarms Jewish families, which have internalized the message that "food is love." The nurse described how this comes up and how they handle it, and she told volunteers how to address it if the family is distressed that the patient isn't eating. Forcing food and liquids actually makes the patient's death more painful, as the body can't process the waste products efficiently.

The primary goal of physical care for the hospice team is making the patient's death journey as painless as possible, so the nurse discussed pain management and people being freaked out by hospice's use of morphine. As someone who believes pain is under-treated in this country, I was totally on board with this.

Unfortunately, the second and third days of volunteer training were delayed due to Hurricane Sandy, so I will have to fill you in on those mid-November. I'm eager to have it done so I can be assigned to a patient. I really look forward to being of service in this capacity.

Agreeing To Disagree

This is a post from my other blog on the Georgetown Patch about Gallaudet University's recent decision to place a veteran administrator on leave because she signed a petition to put gay marriage to a vote by the electorate in Maryland.

Didn't I See This Movie?

I had a surreal experience on Kol Nidre night (the night when Yom Kippur begins). A young woman came up to me at synagogue and said, "Do you remember me?" I had supervised her immersion in the mikvah, a ritual bath, immediately before her wedding because the attendant scheduled to be on duty didn't show up. The night was very memorable for me because I had to be at the surgical center very early next morning to get a D&C for my third miscarriage; the last place I wanted to be was at the mikvah with a happy bride, but it was rainy and I didn't want her to wait any longer for the no-show. Anyway, it was this woman who approached me at synagogue. She told me how grateful she was that I showed up that night in general and all the more so, because she was pregnant. Now, in the movie version of this, I should have been, too: seriously, dragging myself out late at night in the middle of a tragedy to help this woman with a mitzvah (commandment) meant to help you conceive? It felt like the setup for some positive karma coming my way. Alas, the world doesn't work like the movies.

I think about my infertility more than I'd like to admit. I wish I didn't, but it's hard to not reflect when I see pregnant bellies at synagogue, or when I have a sweet interaction with a neighbor's kids. On Rosh Hashana I thought about our second baby, who was due then, and when someone told me her due date was Jan. 7, I thought of our third kid who was due Jan. 6. The one thing I can tell you is, infertility sucks. So much so that my friend who has cancer told me that he found infertility more challenging in many ways than cancer. His experience was that it was certainly more lonely. "People rally around you when you have cancer. That's not the case when you're experiencing infertility," he said.

One of the suckiest things about this is seeing myself turn into a person with behaviors I never, ever wanted to have, like avoiding pregnant friends. I think it is so petty and lame, yet find myself doing it anyway. I am trying to have compassion for myself around this, because I know my poor brain is trying valiantly to protect my wounded heart. I know this is a phase and it will pass. In the meantime, there is always Facebook.

Another eye-opener for me is how suffering related to infertility isn't related to how long you have been trying to conceive or how long you've wanted to be a parent. I was very late in wanting kids, then was thwarted by a very advanced case of Lyme Disease. It is hard to make love, let alone seriously contemplate parenthood, when every nerve in your body is on fire and you can't use your arms. For some (dumb) reason, I thought that would mean I would be less sad about our infertility, but that's not how it works. The heart wants what the heart wants, and furthermore, sometimes I have to encounter the second arrow of, "Well, if you had come to this sooner, things might be different." Feeling like there is a hole in your family is a lonely feeling, no matter how long you've been feeling it.

I am working hard to keep things in perspective, like by taking account of the tremendous blessings that I have, especially being happily married to my best friend. I cling steadfastly to the belief that you can be happy no matter your circumstances. I also do believe that everything will work out how its supposed to, whether or not I'm immediately happy with the results. Still, I can't help but feeling thwarted in doing God's will, as David eloquently wrote about, even as I have to concede that this may not be God's will for us. We'll see; it's definitely too early to make that call. David and I are definitely still in the game.

In the meantime, I continue to pray and take comfort in the struggles of the Jewish matriarchs, most of whom suffered infertility. I read Hannah's story in I Samuel and was moved to tears. I'm trying to use this fallow time as a time to work on myself and be of service to others. If you are the spiritual sort, please keep us in your thoughts and prayers.