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.