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
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
The following is an excerpt from a Level II verbatim I did several years ago to give you an example of how I wrote toward the Level II standards.
This case ended up being one of my most difficult, in that the patient was a child and I was good friends with his mother. His death was hard on all of us. As I have children this child’s age, it cut very close for me. Perhaps a bit too close. This visit is a follow-up regarding her son’s death. I think you’ll see several themes at work:
- who is caring for whom?
- recognizing defensiveness
- allowing space for authenticity and giving permission to be authentic
- theodicy – how does God work things out for the good when a child dies?
- self care
While I see these themes at work, I don’t think I touched on all of them in the conversation.
Feel free to comment!
Every so often in hospice you get asked a baffling question, one that you don’t have a ready answer for. Sometimes it’s because the answer is simply beyond fathoming or beyond a simple explanation: “why is this happening to me?” or “why does God allow so much evil in the world?” Other times I’m baffled because the answer seems so obvious that I’m trying to understand why it’s asked at all. Such was the question I had posed to me a while back:
“Why does God have to take my mom? She never did anything wrong!”
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
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.
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
I think grief has less to do with whatever is lost and more to do with the change it makes in our lives.
I meet so many people in my job who are truly accepting and realisitic when it comes to the death of someone they love. Especially when that person has dementia, has been due to a long and drawn out illness, death has been otherwise anticipated and even welcomed. People often are ready for their loved one to die and therefore feel their grief will be short.
However I find so many times that even when the loss of someone is expected, the loss of everything associated with that person isn’t. Suddenly the family member is faced with not having to visit the nursing home on Sunday afternoons, like they have for the past 8 years. No more doctor’s appointments. No more visits with the visiting nurse after the bedsheets are changed. These are the unexpected losses, and these are the focus of all the denial, bargaining, anger and depression associated with grief.
Mourners can accept the loss of the person, but they can’t accept the fact that that loss has changed them irrevocably and they can’t accept the feelings that accompany that loss. They don’t deny the death, they deny that things have changed and that they have changed. They don’t bargain with God to get them back, they pretend that if they don’t go by the nursing home or the hospital they won’t be sad. They aren’t guilty that they didn’t do more, they feel guilty because they can do more, and that change bothers them.
When I turn from considering grief to only be about a body in a casket to being about the global change in my world, I can really grieve and grow.