Too hot to handle

There are very few nursing homes that will accept patients who have "behavior problems," which is a real shame, because there are lots of medical conditions that can disrupt people's behavior in ways that are beyond their control and that make them very tough to care for. I have seen some patients with medical problems that make them "disinhibited" sexually such that they can be offensive or even assaultive to caregiving staff. Once in field placement I was visiting at a care center and such a patient was escalating into agitation. I was able to keep him somewhat calm by wheeling him in his wheelchair round and round (and round) the facility but eventually I had to take him back to his room, where he thought it would be a grand idea if I joined him in bed. He grabbed me to implement his idea. I disengaged myself pretty easily and left him to (hopefully) calm down by being quiet in his room. I let staff know about his behavior, and they sighed wearily. The patient started shouting and cussing. The staff decided that it might be best not to respond, so as not to reinforce his behavior. (I was thinking more in terms of massive doses of antipsychotics but those were apparently not ordered for him, at least not that day!) "Just ignore him," the charge nurse told a young female CNA, who was cutting another patient's hair out in the hallway. I was charting in a corner behind the nurse's station. Aside from the screaming and cursing the environment was peaceful--that is, until the CNA let out a bloodcurdling shriek. The agitated patient had crawled out of his room and sneaked up behind her and stuck a hand up her shirt! "Didn't you see him coming?" one of the nurses asked. "YOU TOLD ME TO IGNORE HIM," shrieked the CNA. The patient, with a satisfied glimmer in his eye, was "escorted" back to his room by two security guards. The charge nurse brought the CNA back behind the nurse's station to have a break and file an incident report. The CNA seemed pretty shaken. Thinking to console her I said, "I know, it's a drag, but it's not your fault, after all he tried to haul me into his bed a while ago." "OH MY GOD," wailed the CNA, "HE TRIED TO HAUL THE CHAPLAIN INTO BED WITH HIM." The charge nurse said, tongue firmly in cheek, "He must have really wanted to get closer to God." I really had to laugh then. Wouldn't he have been in for a surprise? He was at least nominally Catholic, and in the Catholicism of my family upbringing, bedding a Protestant would have been a ticket to the hot place even if he HADN'T been married already. The care center staff were about fed up with the patient; I phoned his primary hospice nurse, who began ripping HER hair out by the fistful, and the last I heard, the poor fellow was on his way up to a more controlled unit with a behavior management focus, and the hospice provider's medical director was receiving an urgent request for some serious medication. I have to say, I was grateful for the time spent in an inner city church, where persons with behavioral issues are not at all uncommon. It really helps to have a context for separating the patient to some degree from the behavior, realizing that the offensive behavior is really NOT personally directed, and finding the humor in it all.

A particularly sweet moment

I am a white Anglo-Saxon Protestant person and I have to say that sometimes we who fall into that cultural grouping are a bit reserved when it comes to physical affection. I am not talking about sex, but about daily affectionate touch and tenderness. Once in awhile I see a WASPish family break that stereotype, though. I am thinking of a patient I knew once, an old man who had a large, loving family. In his last couple of days he was slowly dying, mostly unresponsive, but being kept comfortable by family and care staff. His family members were unabashedly tender to him. I saw especially his grown sons caressing the dear balding head, leaning foreheads down to touch his, holding his arms, resting a loving hand on his thin chest. I saw wife, sons, daughters, gently holding his old, worn hands, shaping their own hands to his hands, arms, face, body, allowing their hands to store the memory of their loved one's physicality. I could imagine how our patient's gnarled, spotted hands must have held his sons and daughters, loved his wife, in the years past. I wondered if, even deep in his coma, he might have been soaking up the love of his family, feeling the tender caresses and wordless farewells, taking comfort from the touch of his own dear ones right through the very moment of his death. I wondered if, in the days of loss after his death, family members might have found themselves unconsciously curling their fingers into the shape that had held this dear man's hands, or stroked his head--or remembering the precise feel of his forehead against theirs, his cheek against theirs, his lips against theirs. Their time of farewell felt poignant and so sacred to me, because it was both "spiritual" and sensual, and because his body, even old and worn and sick, was so thoroughly, respectfully, and tenderly loved.

Have a thought for those left behind...

...and, if you have loved ones in the teens and twenties, say, and you are dying on a weekend, you might want to think about holding off until mid-afternoon. My tongue is thoroughly in cheek as I write this, thinking of the young person who was called to the hospice because of the death of an elder--let's say a great-uncle. Close family, everyone was coming to be together. Sadly, the great-uncle died between 8 and 9 AM on a Sunday, and when his young relative arrived, it took no great insight at all to discover that Saturday had been a party night. The young person encountered a sign on the patient's door advising a checkin at the nurse's station and came and found me. I gently explained that great-uncle had died about an hour before. Even though the sign was on the door, I explained, it was OK to go in, because there were a number of relatives there enjoying some last time with the beloved great-uncle. The young person took a step toward the room, then reeled back in horror, so unsteady that I leapt to offer an arm. "Do you mean... he, it, I mean... is IN THERE STILL????" Yes, I said, the body is still present. "Oh, whoa, WOW, oh, wait, I don't think I can DO THAT." Eyes like dinner plates, mind slowly grasping the whole scene, slowed, one might guess, by lingering effects of the night before. Look, I said, there are no rules, you certainly don't have to go in, you can do what feels right to you. Would it help, I asked, if I knocked on the door and asked a family member to come and speak to you? "Oh, WOW, oh, yeah, OK, could you do that?" I did. I noticed the young person hung waaaaayyy back, not wanting even an accidental glimpse of... him, I mean it... Family members came out and I left them to work out the details. I imagine that young person was looking for "a hair of the dog" within moments of leaving the hospice!!!

So, elders, let your young relatives have at least a few hours of sleep before expecting them to come join you, er, it, er whatever. Oh, WOW.

Procession

The patient had been much-loved. Family and friends were in the room with the body; I went down to ask some quick questions and get the form filled out that would permit us to release the body to the family's chosen mortuary. They let me know that they would remain with the body until the mortuary transport arrived. It was clearly hard for them to let go. Some tried to remain calm (as if we needed them to) and then wept in sadness for their loss. A strong Christian faith told them their loved one was now free of pain and with God, but there is nothing, nor should there be, that removes the pain of loss. I told them that, when the transport came, their loved one's body would be placed on the cot, and they could follow it to the exit, if they liked. They liked. When the mortuary attendant arrived, I took him aside and asked that he leave the face uncovered until the body was loaded, to which he agreed. We walked to the room, I introduced him, and stood back. When the family was ready, the CNA and I and the attendant wrapped the body in sheets and transferred it to the cot and tightened the straps around it. Then the attendant draped the cover over the body, leaving the face uncovered, as we'd agreed. We rejoined the family in the hall. They had given me permission to walk with them, so we set off, slowly, down the hall, turning the corner to the utility hall, slowly down that long, bright, barren hallway, on the gleaming tile floor, a ragged but heartfelt procession, down to the ambulance entrance. The attendant stopped as someone hit the switch for the double doors to swing open. I started to pray, aloud: "May the angels, dear M., receive you into paradise; may they bear your spirit upon their wings to the presence of God..." The doors opened, the family and friends gathered around me. We watched, in silence, while the attendant slid the cot onto the rails in the back of the transport vehicle and closed the door. The double doors swung closed. A family member touched my arm. "Thank you," she said. "I didn't know we would be allowed to do that."

Most families leave before we call the mortuary. Most times, a CNA then goes in to prepare the body for transport by removing peripheral IV lines and subcutaneous sites and foley catheters and placing a toe tag. Mostly we place bodies in body bags, though the majority of hospice facilities do not. And then we close the room door and leave a sign on it that directs any visitors to the nurse's station. When the transport attendant comes, we do paperwork, escort them to the room, and they load the body and take off. Sometimes that feels just right, but sometimes it seems as if the body, dead, becomes a piece of scut work, our interest no longer focused in that direction, just manual tasks left to do. Sometimes we can discount the impact on a CNA when we ask him to handle the body of someone for whom she has provided the most intimate of personal care and companionship, place that body in a bag, and zip up the bag over the face. It is a tough thing to do, and I think that once in awhile that's why the task is so easy to assign to CNAs. So, being an irreverent sort of chaplain at times where "scope of work" is concerned, I have made myself available to help if needed. Some of the best nurses do so as well. I notice that we all, CNAs, nurses, and I, "talk to" the person as we prepare the body. And we comb the hair, wash the face a last time, carefully arrange the hands. I think that last preparation can be a sacred moment, because even if you do believe that body and spirit are utterly separate and spirit is always better, the body has been loved and cherished, lived in, and in its unique pattern of strengths and weaknesses has played a huge part in who the deceased was and how he or she lived and died. And the body is the medium through which the family and friends have encountered the deceased, and the loss of its familiar presence, its appearance, texture, substance, is a huge piece of their grieving. So, to me, that body deserves tender care in the preparation for transport as much as in its living state. Providing that care honors the person who was and those who grieve--and also allows us to feel the loss and say a last goodbye. I think it has meant something to the CNAs that the chaplain will come and help, and sometimes it has meant something to the families waiting outside the room as well.

Suicide is painless--not so much

Working shifts in the hospital, I have gotten called to the emergency department several times to see patients who have attempted suicide. These are draining situations for all who deal with them, for a lot of reasons--sometimes the staff members have lost relatives or friends to suicide or have histories of depression, as I do. The situations that give me the coldest chills are the truly lethal ones, where it is possible to piece together the story and realize how intent the patient was on death. Each story is different but every one involves careful planning, concealment, deception of family, all in the service of a drive to death. The patients arrive at the hospital only because some strange fluke resulted in discovery of their plan; but they don't always survive. Depending on the means they've chosen to kill themselves, or the amount of time elapsed before they are found, it may not be possible to save them. If they do live, it may be only a matter of time before they try again. I suppose that what makes these calls especially creepy is that the drive to live which often helps other patients survive extreme challenges of illness or injury is, in the lethally suicidal patient, locked in combat with a relentless drive to death, and it is truly--truly--unclear which drive will prevail. Very scary stuff. And the families--no idea the patient has had this in mind, it hits them straight out of left field. The first priority is survival of the patient but even when that happens the story is only beginning. I don't think things ever go back to "the way they were" after a lethal suicide attempt. Treatment for the patient might or might not help--not every person responds to medicines for depression--sometimes the suicide attempt itself leaves disability--the lack of parity for mental health treatment means that medicines and therapy may be out of reach--and the stresses, losses, pain that may have interacted with the patient's depression may be irreversible. It is very hard to find hope, to encourage families to have hope, when the obstacles are so formidable. It is hard for me to stand at a bedside with family members, watching the numbers on a monitor, hoping against hope for signs a patient is going to survive the physical consequences of a lethal attempt. I know in those moments that the family can't completely comprehend what lies ahead and that they will be desperate to find a fixable problem, to ensure the horror won't happen again. But what is true is that when the drive for death overwhelms the drive for life, there is no way to prevent a suicide. And that is a sobering reminder of finitude, of how utterly limited we are as human beings.

Prayers have been requested...

A few long, blabberish posts ago I mentioned a young blogging couple who are doing their best to live out what they believe is God's will for them. Tonight it looks as if the young wife, who has end-stage cystic fibrosis, may get the double lung transplant that could offer her some more years to live and raise her baby daughter. Her husband has asked, on his blog, for prayers, for her and them of course, but also for the donor and the donor's family, who must now be in tremendous grief, and for those who are going to be in travel this night to get to either family.

Let's do it.