Kacy and I have visited our first hospice/Transitions* clients together. They are three adults in a facility for people with dementia -- a small neighborhood home in my metropolitan area. Severe dementia can be a primary diagnosis for hospice, though two of my three clients also have cancers. The setup for our visits is most of the house's residents are gathered in the living room, and I visit with all of them who are alert even though my primary focus is working with the three clients of my hospice agency.
The title for this post came from a comment my husband, David, made when I told him about my first visit to the facility. It seems to have very little stimulation for residents, and they really reacted to the presence of the dog. "It sounds like you brought a snow cone to hell," David said. The Transitions client is the only one who can still speak, but she has no interest in Kacy or me and sleeps all the time. The first hospice client, "Lila," is very awake and alert and took a keen interest in Kacy. She pets her quite a bit, and interestingly, when I gave her a stuffed animal to hold when another resident was holding Kacy, she threw it down and gave me a look like, "You are not going to fool me with a stuffed animal!" Lila spends a lot of time picking Kacy up on the couch and putting her back down again, as well as clipping and unclipping her lead to her collar. Lila, Kacy, and I also take walks around the facility together. On our first visit to the facility, a nurse and social worker from my agency met us and said that Lila was far more animated in Kacy's presence than she normally is, so that was gratifying.
The second hospice client was even more interesting to me. "Dr. White" is a 60-something year old physician also with advanced dementia. He also no longer can speak and has a very flat affect, until he gets a hold of Kacy. Seeing him transform with her is almost as close to a miracle as I've ever witnessed. He strokes her and touches her, burying his face in her fur. Most touchingly, Dr. White kisses Kacy so tenderly. This is a man who has lost the ability to express affection in any other capacity, according to his caregivers, yet he kisses the dog. The first time I saw this I almost burst into tears on the spot, but luckily held it together.
I was thinking about why animals are so great for dementia patients. Dr. White had small dogs earlier in his life, so maybe holding Kacy triggers warm fuzzies for him. Additionally, it occurred to me how hard it must be if dementia patients want to speak. There is a chance they want to, but just can't. Me talking to these patients puts an expectation of a response on them; Kacy demands no such response. Dr. White does not want to let go of Kacy when she's there. When I separate Kacy and Dr. White so she can visit the other residents, I assure him I'll bring her back to him, and whenever we leave I tell him that I'll return with her next week.
Whenever I tell people I'm a hospice volunteer they ask me if it is depressing. I am new to this, but at this point, the severe dementia I work with is far sadder to me than someone dying from disease. Dementia patients return to a childlike state, and I see even well-meaning caregivers treating them like toddlers in adult bodies, and it makes me very sad. Dementia ages people severely: both of my hospice clients are in their 60s and look much, much older. There is a 65 year-old woman in the same facility (with a 25 year-old daughter) who became symptomatic at age 55. The patients in the facility I visit are safe and clean and well-fed, but I don't see a lot of effort going to keeping them stimulated. Perhaps this is more than we can ask staff earning minimum wage to do. That said, I handed Dr. White a ball of yarn to play with, which he did eagerly. This is the kind of accessory the facility could keep around, but doesn't. Witnessing patients transform when they are handling Kacy is, as I said, as close to a miracle as I've seen. I have no illusions that the patients remember me the second I walk out the door, so I am not getting to build intimate relationships with these clients. However, I also have no doubt that for the time the dog is there, their lives are better for those moments. For that reason, it is a privilege to bring a snow cone to hell.
*Transitions is a pre-hospice program for patients who are very ill but who don't yet meet hospice criteria.
Showing posts with label Death. Show all posts
Showing posts with label Death. Show all posts
Friday, December 21, 2012
Tuesday, November 13, 2012
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.
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.
Wednesday, June 6, 2012
True Refuges
"Your lost Joseph will return to Canaan, do not grieve
This house of sorrows will become a garden, do not grieve
Oh grieving heart, you will mend do not despair
This frenzied mind will return to calm, do not grieve
When the spring of life sets again in the meadows
A crown of flowers you will bear, singing bird, do not grieve
If these turning epochs do not move with our will today
The spheres of time are not constant, do not grieve
Don’t lose hope, for awareness cannot perceive the concealed
Behind the curtains hidden scenes play, do not grieve." -- Hafez, "The Lost Joseph" (full poem here)
"I'm here without you baby, but you're still on my lonely mind
I think about you baby, and I dream about you all the time." - Three Doors Down, "Here Without You"
I don't know how much more I have to say about the horrors of miscarriage, except to say that they seem to get exponentially worse. With one miscarriage, it's like, "Well, this sucks, but 25 percent of all pregnancies end this way, so we'll grieve, hope and proceed forward." With two in a row, it's like, "Uh-oh, I hope this doesn't indicate a trend. Just bad luck." With three in a row, you become a "serial miscarrier" and the stakes change. Our most recent miscarriage is like a gigantic hole in my heart. It feels like more of a profound loss, in part because it's our third blow of this kind in a year, and I think in part because we felt some relief that we heard and saw our baby's heart beat. Even though I still worried, that gave me some hope that things could be ok. Nevertheless, it turns out our daughter had an extra thirteenth chromosome, which is incompatible with life. Knowing this was a little girl, and not an anonymous "it" makes this even more personal and painful.
One thing this year-long curriculum in grief has taught me is how much of a precious gift it would be for all of us to give each other the gift of mindful listening. In our culture, "help" has become synonymous with "fix": people see David and me hurting and want to relieve us of our suffering, so they make offers of "help" from the reasonable to the sublime to the ridiculous. The people who have been the greatest help to me have been those who say, "This sucks. You are in the middle of something awful and unfair, and I am so sorry for you." Bless you. One of the reasons that you don't say anything when you enter a Jewish house of mourning is that there is nothing to say. Loss is ineffable.
All of my old complaints about the hurtful things people say and do in their attempts to "help" still stand, though I have some new complaints too. The primary one is women offering me advice for their fertility problems, which are not our fertility problems. There are many stages where reproduction can fail, and I find myself exasperated with advice (again, well-meant) from people who have a totally different problem we do. They don't realize that their suggestions are equivalent to suggesting Lupron, a prostate cancer drug, for a breast cancer patient. But hey, they're both cancer! To all you progesterone pushers: all the hormones in the world would not have negated an extra chromosome, but that will be a later post. I am not immune to this desire to "help"; God help you if you ask me about Lyme Disease, because you will get an hour lecture full of strong opinions! Then again, in my defense, Lyme and co-infections have one cause, though many presentations of the diseases. Infertility is quite a bit more complex since it can have different causes, many causes, or be completely idiopathic.
I am all about care right now for David and me. Frankly, right now, other people's needs come significantly below ours. In trying to determine how to best care for myself, I keep asking myself, "What and who are true refuges for me?" This has guided how I am spending my time and who I am spending it with. No refuge for Sarah, no Sarah. This means a lot of calls to me are not being returned, and that's totally as it should be.
To my great surprise, one of my most helpful refuges has been meditation. It is surprising because my meditation cushion is kinda the loudest place in the house nowadays. You wake up to what is when you meditate, and if what you're waking up to sucks, it really hurts! I listened to a dharma talk today by Sylvia Boorstein titled "May I Meet This Moment Fully, May I Meet It As A Friend." I've been repeating that throughout the day. Some days, like this morning, I was able to compassionately touch my grief in my meditation; other days, it is too intense, and I return to the traditional metta (loving-kindness/blessing) practice.
Loving, compassionate, close friends and family members have also been a true refuge, as have both of my spiritual communities: my Jewish one and my meditation one. I found out last Wednesday that our baby died, yet I couldn't imagine being anywhere other than with my sangha (meditation community). I was hugged by so many people, and got kind follow-up emails from people sending me metta and checking on me.
Little Kacy, our dog, is a true refuge, as always. And on a different wavelength, good TV, in moderation, provides much-needed distraction. What are your true refuges?
This house of sorrows will become a garden, do not grieve
Oh grieving heart, you will mend do not despair
This frenzied mind will return to calm, do not grieve
When the spring of life sets again in the meadows
A crown of flowers you will bear, singing bird, do not grieve
If these turning epochs do not move with our will today
The spheres of time are not constant, do not grieve
Don’t lose hope, for awareness cannot perceive the concealed
Behind the curtains hidden scenes play, do not grieve." -- Hafez, "The Lost Joseph" (full poem here)
"I'm here without you baby, but you're still on my lonely mind
I think about you baby, and I dream about you all the time." - Three Doors Down, "Here Without You"
I don't know how much more I have to say about the horrors of miscarriage, except to say that they seem to get exponentially worse. With one miscarriage, it's like, "Well, this sucks, but 25 percent of all pregnancies end this way, so we'll grieve, hope and proceed forward." With two in a row, it's like, "Uh-oh, I hope this doesn't indicate a trend. Just bad luck." With three in a row, you become a "serial miscarrier" and the stakes change. Our most recent miscarriage is like a gigantic hole in my heart. It feels like more of a profound loss, in part because it's our third blow of this kind in a year, and I think in part because we felt some relief that we heard and saw our baby's heart beat. Even though I still worried, that gave me some hope that things could be ok. Nevertheless, it turns out our daughter had an extra thirteenth chromosome, which is incompatible with life. Knowing this was a little girl, and not an anonymous "it" makes this even more personal and painful.
One thing this year-long curriculum in grief has taught me is how much of a precious gift it would be for all of us to give each other the gift of mindful listening. In our culture, "help" has become synonymous with "fix": people see David and me hurting and want to relieve us of our suffering, so they make offers of "help" from the reasonable to the sublime to the ridiculous. The people who have been the greatest help to me have been those who say, "This sucks. You are in the middle of something awful and unfair, and I am so sorry for you." Bless you. One of the reasons that you don't say anything when you enter a Jewish house of mourning is that there is nothing to say. Loss is ineffable.
All of my old complaints about the hurtful things people say and do in their attempts to "help" still stand, though I have some new complaints too. The primary one is women offering me advice for their fertility problems, which are not our fertility problems. There are many stages where reproduction can fail, and I find myself exasperated with advice (again, well-meant) from people who have a totally different problem we do. They don't realize that their suggestions are equivalent to suggesting Lupron, a prostate cancer drug, for a breast cancer patient. But hey, they're both cancer! To all you progesterone pushers: all the hormones in the world would not have negated an extra chromosome, but that will be a later post. I am not immune to this desire to "help"; God help you if you ask me about Lyme Disease, because you will get an hour lecture full of strong opinions! Then again, in my defense, Lyme and co-infections have one cause, though many presentations of the diseases. Infertility is quite a bit more complex since it can have different causes, many causes, or be completely idiopathic.
I am all about care right now for David and me. Frankly, right now, other people's needs come significantly below ours. In trying to determine how to best care for myself, I keep asking myself, "What and who are true refuges for me?" This has guided how I am spending my time and who I am spending it with. No refuge for Sarah, no Sarah. This means a lot of calls to me are not being returned, and that's totally as it should be.
To my great surprise, one of my most helpful refuges has been meditation. It is surprising because my meditation cushion is kinda the loudest place in the house nowadays. You wake up to what is when you meditate, and if what you're waking up to sucks, it really hurts! I listened to a dharma talk today by Sylvia Boorstein titled "May I Meet This Moment Fully, May I Meet It As A Friend." I've been repeating that throughout the day. Some days, like this morning, I was able to compassionately touch my grief in my meditation; other days, it is too intense, and I return to the traditional metta (loving-kindness/blessing) practice.
Loving, compassionate, close friends and family members have also been a true refuge, as have both of my spiritual communities: my Jewish one and my meditation one. I found out last Wednesday that our baby died, yet I couldn't imagine being anywhere other than with my sangha (meditation community). I was hugged by so many people, and got kind follow-up emails from people sending me metta and checking on me.
Little Kacy, our dog, is a true refuge, as always. And on a different wavelength, good TV, in moderation, provides much-needed distraction. What are your true refuges?
Thursday, May 5, 2011
The Journey
I am in Phoenix helping my father die, and move on to the next leg of his journey. It's 1:30 a.m. I'm physically, emotionally, & spiritually exhausted, but sleep is elusive. I just listened to Sia's song "Breathe Me"; it captures my feelings pretty well at this moment. I'm writing, with sore arms, on my iPhone, so more later. Please pray for my Dad to have a peaceful death, and for my family. Blessings, Sarah
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