Category Archives: hospice

I want to float, not dive

7239cf715db990fa2babb5c00ec962e1.b2c7dcabcd02d6b1a207e0dffe7b5242.jpgNot quite ready for the day.

I have my tea and mouse is keeping me company.  I kinda want to be all on top of it and hit the ground running, but today I just want to ease into it.  Like when you are going swimming in the early morning and you slip slowly into the still waters, trying not to make a ripple.  You are one temperature and the water another and the change from one state to another can be a welcome shock, but not first thing in the morning.  Late in the afternoon, in the heat of the summer, you welcome it, along with the other swimmers. But early in the morning, you move slowly into the depths.

And today I have patients to see and meetings to attend and driving to do between one place and another,  all within certain times, all seemingly crowded together. There are notes too. Notes to say what I did and how I met the goals already written.  “Patient will transition through the end of life process with peace and serenity.”  ” Patient received pastoral presence and silent prayer.”  Today is like most days, but today I want to slip into it slowly and purposefully, not reactively. I want to slip into the sacred and let it support me as I go,  I want to float, not dive.

 

Mouse Is In The Garage

I had a heavy week.  I thought I would get ahead of it by doing a spiritual assessment on a new admission Sunday afternoon and while I was at the facility, I would check in with another couple of patients.  I have a flexible schedule like that. However I also had a bunch visits that needed to be done, a week of lousy, rainy and otherwise dank weather, a memorial service and an online class.  Come Friday I was a bit fried.

Balance is the key and so knowing that, I got a kitten and named it Mouse. img_0788

I figured having something very alive was a good balance to being with those who are dying.

But after a long week, I figured I needed something else. Teary eyed and exhausted. I finished up work and even Mouse could not help lift the weight, so I headed down to the village, and I decided to go and get that bike that I have been wanting for a good long while.  I had been down to the Dedham Bike Shop at least a couple of times over the last few years and even bought a bike for my buddy Bea’s birthday. But didn’t get around to getting one for me.

I stopped riding a bicycle about 18 years ago when I was diagnosed with IC and was told that I had to change a whole lot of things in my life to reduce the pain and disabling effects of the illness.  Riding a bike was one of those things. Plus I was either a student or an unemployed CPE intern or simply unemployed, so a fun thing like a bike was out.

imagesYesterday I threw  caution to the wind and decided to go look at bikes and found one that seemed like a good fit. I put a deposit down on it with the plan to go ahead and pick it up this morning.   I felt like I was 5 again.  My first bike was red Schwinn Pixie but with a white seat and it came from the Dedham Bike Shop. I picked a purple one and got a purple helmet to match.  I felt like the kid at Christmas who peaked and saw a bike with their name on it.

It was a good thing too. When I returned home after a meeting last night I was called in to work to help the family of that new patient I had been with last Sunday.  The patient had put themselves on hospice and the family was not ready.  The Patient was ready for death and had said so to me, but the family wasn’t on the same page.  And despite the protests against the illness, the patient passed away.   I got the call and within 15 minutes was on site, but the family had left and so I did what I was called to do.

Went down the hall, entered the room and then spent then next little while with the deceased.  I had found the TV on, the bathroom door open with light streaming out, full light in the room and the sheets of the deceased all askew.  I turned things off, pull the covers up over her feet, shut the door and began to pray.  They had said to me last Sunday that they had forgotten their prayers, so I pulled out a Rosary and said it for them, as I laid the pink plastic cross down.  Returning home I took some time to decompress and thought about that bike.  I went to bed singing “Bicycle race ”

This morning I went down to the village and rode it home, singing.   These same streets that I rode my first little red bike on and all of those feelings of being free came back. Just like when I first learned to ride and go faster than on foot.  And getting the bike gave me some energy to do the chores and put the cat window in for Mouse. She learned to use it and has some freedom now herself.

In her new freedom she disappeared for a while and gave us a scare.  Turns out she went into the neighbor’s garage and before they went out for the night, the door was closed with her locked inside.  They are still out and she is still locked in, but at least I know where she is and eventually they will come home, see my note pinned to their door and I can go fetch her.

And here is where the balance pays off.  Mum was tired at the end of the day and when Mouse didn’t show up, Mum was upset.  Afraid of all the things that could go wrong.  On the other hand, I had an awesome day riding my bike and singing Queen songs.  I figured Mouse would either show up or she wouldn’t.  Either she lives a free life going out and coming, sometimes getting stuck and needing to be found, or she doesn’t.  I choose the former too.   And like Mouse I choose to play when I can.

 

Exhaling into death

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It occurred to me yesterday morning that I have been fearful of the role of full-time hospice chaplaincy for two main reasons.

The first is that I thought I might get burnt out ministering mostly to folks who are actively dying and their families, that the nature of unavoidable death without the affirmation of life might not be there. That without the balance, I would eventually tip over and absorb too much of the grief and not enough of the life.

If you are on my hospice list then you are most likely dying.  Some folks get better with hospice care and no longer qualify for it, but mostly, folks die.

Here is the other point. Frankly I didn’t have confidence that my spunky little self was cut out for the solemnness of the gig.  I met a ton of ministers and others who felt called to hospice while I was in seminary and CPE, and they tended to be very peaceful, calming, and reverent.  I am mostly irreverent and have a quirky sense of humor.  I am also naturally charismatic and sometimes find it difficult to tamper that gift down. I don’t mean to say that I am all that and a bag of chips, but I have that funny personality that is highly interested in others, connects easily to strangers and for the most part, is authentic.  What you see is what you get.

I didn’t think that my calling was to hospice.  I figured it was to helping people with addictions, and homelessness, and hospital type stuff.  I love hospital chaplaincy and did well in training with the cases where it was messy.  Messy with bells and whistles going off.  Messy with theological issues.  Messy with emotional responses.

This is what I discovered.

In the hospital, death is there and is often sudden.  Unexpected.  As chaplain you need to have your spiritual tanks filled because you respond to some deep stuff. People are plugged into machines, the heart is monitored, beeps and alarms go off. People rush in and rush out trying to save the patient. The main purpose of the medical team is curative,  everybody jumps in at the code to save the life and the chaplain holds the sacred space.

A 17-year-old wraps their car around a tree and the family comes to the bedside, faced with issues of taking him off life support or organ donation.  The baby’s heart isn’t working and he has to be medevaced to Children’s hospital.  You are called to take someone to see their loved one in the morgue after death from an overdose and you lead them to a cold room, generally far away from the rest of the hospital, and generally underground.   Shock is the response to sudden and unexpected death.  It is surreal at times.

Death comes unexpectedly and on the emotional intensity scale of 1-10, 10 being full on, you give spiritual care and support, holding the sacred space for the family and the patients.  It is a fast inhale, like when you are being startled and you quickly hold your breath for dear life, hoping death will not take it.   And sometimes you go from emergency to emergency and you have to be there, one patient emergency after another.  All of you, present and with The Divine because you are the symbol of the sacred in the moment.  It is exhausting, but I was good it.  I can hold my breath for a very long time.

In hospice, it is like a long and cleaning exhale.  Death is not unexpected, it is unavoidable, for the most part.  There are folks who struggle with accepting death, their own or the death their loved one.  Hospice is provided only if there is a medical indication that curative medicine will no longer help.  To be on hospice you have to have a terminal diagnosis with death imminent, generally less than 6 months.   Hospice is when death has knocked the door has opened.

And with the exhale, it seems that the tension of intensity , the holding your breath against sudden illness and unexpected death,  is released. The emotions are still there, but not as tense.  The grieving process has begun.  The emotion has moved from the shock of not accepting that death has come,  to sometimes welcoming the relief from suffering that death sometimes brings.

In this place, with patients and their families, my true self can be present without filtering.  Not to say that I was fake in my other work.  I was authentic, but I feared that I could not be authentic in hospice full-time.

Well I seem to be wrong. This calling fits like a glove.

I can hold the space sometimes  and relieve the tension by bringing life back into the room of the dying.  “Tell me a little bit about your loved one” I say.   I can get the story telling started because I am genuinely interested in the life of the patient.  Family members get that. They can feel it  and respond by sharing the life that their loved one lived.  Granted I am still new at this type of gig. But if I can be my true self right from the get go, then I am pretty optimistic about it.  All things will sugar out with time. I am hopeful this calling will get sweeter.