Too Close to Home: Hospice workers and personal loss

Within the past 6 months two of the nurses I work with lost their mothers. In both of these cases, they chose to have their mothers on our hospice.

This is a very hard thing to do. It was awkward for a while for all of us at team especially to be referring to and discussing someone in a very clinical manner, yet knowing that this was a team member’s mother. Yet it was also a good reminder for all of us that all of our patients are someone’s mother, father, brother, sister, or even child.

The awkwardness goes away after a brief time. However when that loss finally happens it can be devastating, not only to the family member but to the whole team. Continue reading

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Why I’m a Chaplain – II: Connecticut Hospice

Last time I talked about how my dad’s illness and death helped guide me toward hospice. What I hadn’t mentioned was that he was never on hospice – we didn’t even have time to consider that. My first experience in hospice care came while I was in seminary at Yale Divinity, where for a time I volunteered at Connecticut Hospice.

This was my first experience with any kind of hospice. My responsibilities were pretty light – empty the garbage cans by the bedside, make sure the water pitchers were full. But it was quite an interesting experience and one that, along with many others, pointed me in the direction where I am headed now.  Continue reading

Why I’m a Chaplain – I: My Dad

I thought I’d start a series talking less about the practicalities of hospice and chaplaincy and share a bit about what got me to this place in life. Even these are going to be numbered don’t think of them being in any particular order.

So first is my dad.

I grew up in rural western Pennsylvania on a 50 acre farm with my three sisters, mom and dad. My dad, besides running the farm, worked in a sintering plant. The steel industry in the area was on the decline, and I remember my dad alternately being laid off, then working odd shift hours, then being laid off again and so on. But something significant happened when I was in about middle school: my dad was diagnosed with Acute Lymphocitic Leukemia (if I remember all that correctly). Initially this came as a huge blow to our family, but our doctor said that if you were going to get Leukemia this is the type to get. It was not itself fatal, and could be managed fairly well. Continue reading

We need to rethink grief

Artist Motol Yamamoto, who created labyrinths of salt to help express his own grief at the loss of his sister due to brain cancer. Click on the image for more information.

In my hospice, as well as in many others, when someone dies we consider the family members involved and rate their grief as low, medium or high. The thought being that if someone is on the low end, they will generally be fine. On the medium and high end though, we need to be more involved as this person may not cope well.

And I’m starting to think this is really missing the point.

There has been research recently in regards to complicated grief – grief that becomes debilitating to the point of becoming a chronic, life-limiting condition. This is the kind of grief that we in hospice are trying to identify, monitor and assist with. It differs from normal grief in that it is much more of a clinical condition, however it has many of the same characteristics as normal grief. The main determinants between the two, putting it simply, are duration of symptoms and the severity of them. Normal grief can involve impulsive crying, sleeplessness, rapid weight loss or gain, and even auditory or visual hallucinations. But they tend to subside over time and generally do not interfere with daily functioning. Complicated grief resembles PTSD, in that it can have these same symptoms but amplified and intrusive to the point where they cannot function normally. Continue reading

Cancer from both sides: Joanie Baldwin Branch

I wanted to feature a post and blog from a friend of mine who is dealing in her own way with terminal cancer. I worked with her in hospice, she as a nurse and I as a chaplain. After she was diagnosed with her own cancer I encouraged her to write about it. This post I thought would be a great introduction. You can catch up with her at joanbaldwinbranch.blogspot.com.

More Cancer Lessons:
I have so many thoughts running through my mind with the underlying theme being; I must start writing all of this down. So, here I go not knowing what will come out of my head or where to start this.
Since I have cancer, I think a lot of the things one thinks of if they know their time here on earth is limited. It was then that I discovered what a blessing this time is. If you know you don’t have all that much time, you tend to, at least mentally, write a ‘to do’ list. On that list are things like funeral arrangements, writing letters to my children, thinking about what songs you want played at the service, etc. The introspection is phenomenal. I am getting to know me at last. Just knowing me has been something that I have often pondered doing. Now it becomes a reality. I find so many things funny. I laugh long and often. Poking fun at yourself & this disease is so freeing. It has been influential with having my family members stop denying that I am going to die. They are learning to accept this diagnosis. There is no ‘elephant in the room’. We make jokes about my baldness and my chemo brain although my grandson, Ryan, says that I was forgetful before I ever had cancer & chemo!

Standing in the hallway

once again I haven’t written in a while. once again due to feeling incredibly busy.

We had a speaker at our hospice a few days ago who talked about how social workers and chaplains tend to be seen as mildly irrelevant in hospice care. Many chaplains, for example, routinely carry caseloads of over 100 as well as on call duties. I know one chaplain who has over 100 patients and a church. That to me is insane.

Given the fact that I have about 80 patients, and only about 60 of those I see regularly, I should feel like I’m on a luxury cruise. However that’s hardly the case. Admissions happen on an almost daily basis, and these require quick attention even though the impulse is to put them off until absolutely necessary. A quick phone call to the family or patient can usually tell you how much of a problem there may be, so that can help to prioritize things.

Continue reading

Joshua 4: Message for a facility memorial service

I thought I’d pass this recent message from a memorial service our hospice hosted at a personal care facility. They had started a rock garden and we donated a tree to serve as a memorial marker.

…Joshua said to them: “Cross over before the ark of the Lord your God into the midst of the Jordan, and each one of you take up a stone on his shoulder, according to the number of the tribes of the children of Israel, that this may be a sign among you when your children ask in time to come, saying, ‘What do these stones mean to you?’ Then you shall answer them that the waters of the Jordan were cut off before the ark of the covenant of the Lord; when it crossed over the Jordan, the waters of the Jordan were cut off. And these stones shall be for a memorial to the children of Israel forever.” Joshua 4:4b-7

This scene marks a pivotal point in the history of Israel. This nation of former slaves has survived forty years in the wilderness, scraping by only at times by means of miraculous intervention, to arrive at the land promised to them several generations before. Nobody who heard that promise is alive to see it fulfilled. Even Moses, who lead the bedraggled group for those 40 years and who was for all that time their closest connection to God, died before this scene. This nation of nomads has finally arrived at the end of their journey from slavery to freedom.

Continue reading

How Not to Say or Do the Wrong Thing

I chaplain friend of mine passed this article along from the LA Times:

How not to say the wrong thing

It works in all kinds of crises – medical, legal, even existential. It’s the ‘Ring Theory’ of kvetching. The first rule is comfort in, dump out.

Susan Silk and Barry Goldman

April 7, 2013

When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan’s colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn’t feel like having visitors, and she said so. Her colleague’s response? “This isn’t just about you.”

“It’s not?” Susan wondered. “My breast cancer is not about me? It’s about you?”

The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie’s husband, Pat. “I wasn’t prepared for this,” she told him. “I don’t know if I can handle it.”

This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan’s colleague’s remark was wrong.

Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie’s aneurysm, that’s Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie’s aneurysm, that was Katie’s husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan’s patients found it useful to tape it to her refrigerator. Continue reading

1 Corinthians 13:1-7, for a funeral

 

1 Cor 13:1-7 If I speak in the tonguesof men and of angels, but have not love, I am only a resounding gong or a clanging cymbal.2If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing.3If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing. 4Love is patient, love is kind. It does not envy, it does not boast, it is not proud.5It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.6Love does not delight in evil but rejoices with the truth.7It always protects, always trusts, always hopes, always perseveres.

These words are often heard at weddings, not at funerals. But they are just as appropriate. In marriage we see the romantic side of love, the love of one for another. But in reflecting back over an entire life we can see how that love flowed out to others, to see the hard work that it did in tough times, and to see that love is not merely something that is felt but something that one does.

When Paul wrote to the Corinthian church, he was writing to a church divided. There were rival groups fighting for attention and power while more serious issues were being ignored. They were boasting about their wisdom and knowledge, but Paul was pointing out that their wisdom was futile. The church was “majoring in the minors” to borrow a phrase. Paul responds to a number of their questions about the order of the service and so on, points out where he sees them in error. And then it’s at this point that he points them to the “why” behind the “what to do”. Continue reading

Overcoming Nature

I watched the film Temple Grandin with my wife over the weekend.  My wife works with autistic children and their families, and had been looking forward to seeing this movie for some time.  Grandin is a PhD and expert in animal husbandry, as well as autisitc.

Part of the story revolves around how she seeks to revolutionize the cattle industry by reorganizing slaughterhouses to make them more amenable to cows actually behave, making the whole process more humane as well as efficient.  For example, rather than forcing cows into insecticidal dips with prods and slick  chutes, which occasionally result in drowning, Grandin’s model uses curves to lead the animals to a stepped platform, where the animals simply walk into the dip, swim through, and back out.  It’s all pretty amazing in how simple the design and process appears, yet how complex the behavior is that the process is built upon.

What else is interesting is her reason for doing so.  Most of us would think that her affinity for cattle and the desire to limit their suffering would have led her to denounce the whole industry, but that wasn’t the case.  She understands and respects the life that is present in each animal (in the film, after a cow is killed before her she asks “where did it go?”), but doesn’t have the deep emotional connection that we would expect due to her autism.  The reason she sees for treating the animals humanely is simple but deep: “Nature is cruel, but we don’t have to be.”

I thought about this in light of hospice care.  This same thinking guides a lot of our care and judgment regarding care for those we care for.  We see nature at it’s most cruel sometimes.  I recently had a patient whom I was close to pass away.  He had struggled with pulmonary fibrosis for several years, struggling to breathe continually and leashed to an oxygen tank.  He gradually grew weaker and more dependent, to the point where he could only walk short distances.  Then he had a serious stroke, taking most of whatever he had left.  He could talk, though slurred, and could understand, but was otherwise unable to move.  Even his head had to be propped up with a neck pillow.  It was tremendously sad to see the cruelty of nature at work here, and our job was to make sure that cruelty was dealt with as best we could.

The physical pain was manageable, but the psychological and spiritual pain was tremendous. I spent time with him the day he died in his home, holding his hand and praying for him along with our staff and his wife and daughter.  Some of his grief was directed at God, and I can’t say that I blame him.  You can’t go through an illness like that, or accompany someone along that road, without wondering why.

There are plenty of answers out there for sure: the fallen world, suffering as part of life, the stripping of everything to increase our dependence on God, the work of the devil, the work of God, and so on.  Yet I found Grandin’s insight to be one of the simplest and maybe truest at the moment.  Nature is cruel in many ways, and we can’t overlook or overcome that cruelty.  Sin and death are, at least for now, permanent fixtures in the world.  However part of realizing the kingdom of God in the here-and-now is to see that while these can’t be overcome, we don’t have to fatalistically succomb to it.  Jesus reminds us, over and over again, that he has “overcome the world”, and even though that cruelty is still there in the world, we can overcome it as well.  Nature is cruel, but we don’t have to be.