STREAM OF CONSCIOUSNESS THURSDAY

April 25, 2024April 25, 2024 / joseph elon lillie / 2 Comments

Today would normally be the day on which I posted my Festival of Spring 2024 post, but this has not been a normal week, or maybe it is just the new normal.

Since Mom has passed we have all been relearning how to live life. Many of the folks in church told me that care-giving to the end of life, left the care-giver with a sense of identity loss, when all was said and done. I thought I believed them when they said it. I thought I knew what they meant. I also thought I had bolstered myself against that very thing by being “pastor”. I realize now, that it did not work as well as I had hoped. Maybe it worked as best as it could. Maybe like the rest of the grief process, coming to our new identities, apart from being Mom’s caregiver, is just going to take time and be a several step journey.

All that to say, I am not doing my Festival of Spring Post today. I will probably do that tomorrow. Today I will just blather on a bit about our lost identity.

In the last weeks we have had to relearn that someone does not always have to be home. The whole family can go out together whenever we want because no one has to sit with Mom. It actually took us about three days to figure that out and it still feels strange to do it, almost like a betrayal. It feels even stranger to come home to an empty house.

Learning silence is another part of this new identity. I had not realized it until I cancelled cable and shut the television off but the TV has been on for the better part of a decade from 7 AM until 10 PM everyday. Mom liked the noise and never wanted it off. We got used to eating our meals to the sound of “Murder She Wrote” or “Perry Mason”. The first time we gathered around the table for dinner, and the television was not on, there was this deep sense of peace and breath and a weird finality that felt at odds with the table conversation. I guess I thought I would be struggling with who I was or who I was going to become in this new phase of life. It’s not really that at all. I have plenty to do and I don’t really feel like I am a whole new person. Rather I am struggling with how to be in the world. I feel like I have a pretty good grip on who I am. It is the new world of silence and emptiness that feels alien to me.

UP…DOWN…STUNNED… NUMB…HOPEFUL….DISCOURAGED FROM ONE MINUTE TO THE NEXT

April 6, 2024 / joseph elon lillie / 2 Comments

On Thursday last week, Mom’s health took a stark turn. She woke with intense pain. She went through two bouts of shaking and then descended into unconsciousness. We were told she had days left to live.

Brenda and I together with all the kids prepared ourselves for our vigil with Mom over the Easter weekend. As the world faced Good Friday and looked forward to the Resurrection, we were facing our own very personal deathwatch. The themes of death and resurrection were very real to us as we prayed Mom through to eternity.

I don’t know how it feels for anyone else to wait with someone who is walking in that space between life and death. I imagine it must feel different for everyone. For me the waiting was a tightening of my chest and a pressure behind my eyes. It felt like I was holding my breath underwater and my ears were filled with sound of the ocean for days.

On Friday we received more bad news that our one remaining Uncle had a heart attack and was being life-flighted to UMASS Medical Center in Worcester Massachusetts. It was almost more than our hearts could bear as a family.

I have to say I am so grateful for a church family these days. So many congregants reached out to us during this time with prayers and with food (our refrigerator had no more room). Our deacons rose to the occasion for Uncle Tom, knowing that I could not leave my mother’s side for a five hour hospital trip. They visited Uncle Tom and his family at the hospital and prayed with them. On Easter Sunday as Brenda and I waited at mom’s bedside, my daughter Amanda opened the church service and my daughter Melanie led worship for Easter Sunday. One of our Deacons, Jody Clapp and our Church DLT Coordinator, Carrie Hackett preached the Easter Sunday sermon. Amanda officiated the Easter baptism.

We thought Sunday would be Mom’s day to leave us for Heaven, but she was not ready. At about 5 A.M. on Tuesday morning Mom finally entered Jesus’ arms.

We got news that Uncle Tom was doing well and was expected to make a full recovery.

On Tuesday night I began to get sick. My body I guess had had enough of waiting and pressure and up and down. On Wednesday, my son’s birthday, Brenda commented that I looked very unwell. Truth be told I felt like I was hanging on by a thread. Thursday I was flat on my back for the entire day. What started as a cold turned into a stomach bug.

On Friday we got news that Brenda’s dog, Oliver, in The Netherlands, had eaten some poison and was at a veterinary specialist trying to save his life. Oliver went into renal failure this morning and needed to be put to sleep.

It has been a week of bad news, more bad news, Good news, more good news, bad news, good news and more bad news. To say that we don’t know how to feel, to say that we are stunned, numb, hopeful and discouraged is perhaps the most accurate description of our emotional state at the moment.

I stand at this moment on the shoulders of the Apostle Paul and declare, “But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. ⁸We are hard pressed on every side, but not crushed; perplexed, but not in despair; ⁹persecuted, but not abandoned; struck down, but not destroyed. ¹⁰We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. ¹¹For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. ¹²So then, death is at work in us, but life is at work in you.” 2 Corinthians 4:7-11

HOPE IN RESURRECTION

March 30, 2024 / joseph elon lillie / Leave a comment

We continue to stand with Mom in the In Between place as she waits to walk into the embrace of Jesus.

It has been a bit surreal walking through this year’s Holy Week with the spectre of death just around the corner every moment. At the same time the hope of resurrection has also been with us throughout the week.

We have been listening to Christian music exclusively since Thursday morning. No television shows. No news. Just worship. We are filling the house with the praises of our God to help Mom’s passing be one of “peace that passes all understanding”. Just today Brenda and I were listening to People and Songs and this song just really spoke. https://youtu.be/ed_pL2MDqNU?t=22

Today Amanda, James and Kristine took Lela, Cloddles and Sevy to see the Easter Bunny at our town’s Easter Egg Hunt.

You can’t tell these two are sisters can you?

My daughter Melanie dressed up as our town’s Easter Bunny…the kids had absolutely no idea.

Tomorrow Deacon Jody Clapp and DLT Director Carrie Hackett will be sharing the sermon for Easter in my absence. Melanie will be leading the worship and Pastor Amanda will be performing the baptism. Our life keeps moving forward, even in the face of death, because even death must bow before the hope of resurrection.

This is the hope our family is functioning in. As hard as this process is, we know this is not the end. It is just a transition.

These flowers came for Brenda today from her lifelong friend Barbie, to remind us that the world is full of color and that hope remains!

IN BETWEEN

March 29, 2024 / joseph elon lillie / 2 Comments

It is quiet now. Joe has gone off to work at school and the rest of the house is still asleep. I can hear the quiet rattle of mom’s breath in the other room as she walks the In Between place between life and death.

We are in the last days, now, of this hospice process, at least as far as any of us can predict this kind of thing. Mom awoke yesterday with great pain in her arms. Her right arm had swollen again. Mom’s kidneys are shutting down and she is retaining fluid.

Her arms have swollen before, but yesterday was different. There was shaking and more confusion, much, much more. Then she went to sleep. Pain and shaking came back a few hours later and we began medicating to stay ahead of the pain.

The nurse came to put in a catheter because Mom’s body cannot void without help now. She has been resting quietly since. Her oxygen level is very low but her breathing is not labored. She seems peaceful and that is our prayer for her, that she may depart in peace.

On this Good Friday, our family is standing vigil with Mom. We are in the In Between with her watching, as watchmen on the walls, for the time when Jesus will come to take her unto Himself.

“Do not let your hearts be troubled. You believe in God^[a]; believe also in me. ²My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? ³And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. John 14: 1-3

THIS NEW THRESHOLD

March 15, 2024 / joseph elon lillie / 12 Comments

One of the things I do to “sharpen the teeth” of my leadership saw, is a monthly coaching session designed to help me talk through issues I am concerned about. In these sessions I do almost all the talking. The coach is my “thinking partner”. He helps me by asking questions regarding my take on the subject matter I am discussing.

These last two months the coach has asked few questions during our sessions. I have come ready to talk…a lot…. about…thresholds.

Photo by Ekaterina Astakhova on Pexels.com

I realize that with the imminence of my mother’s passing, I am at one of life’s thresholds, one of those places where life changes from one thing into another.

Photo by Nataliya Vaitkevich on Pexels.com

From past experience I know threshold experiences can be jarring, even emotionally violent. Going back I can think of four or five threshold experiences: My Conversion

My marriage

My Father’s death, My divorce

Covid…

and now…this.

In the past I was mostly unaware that I was standing at a threshold. I was certainly unaware that with a little forethought I could have turned change into a self directed chance for the life God wanted for me and deeper fulfillment. I just kind of walked through the doors and let life play out in all its glorious confusion.

Don’t get me wrong with most of my thresholds I have ended up mostly where God wanted me to be. I am living the life He desires for me now. I think some of my thresholds were unnecessarily painful… maybe even entirely unnecessary. The past is past and the only thing it is good for is as a lesson. With this threshold I feel like I am Nemo at the edge of the reef getting ready to launch out into open ocean. There are many things I know this time that I have not known before. One of the those things is that as I near this threshold I need to be more intentional than ever before about how I intend to walk on the other side of the door.

WHAT ARE SOME LESSONS YOU HAVE LEARNED FROM YOUR THRESHOLD EXPERIENCES?

QUIET DAYS OF PLANNING

March 13, 2024March 14, 2024 / joseph elon lillie / 6 Comments

Mom slept for twenty eight hours, waking only once for the bathroom and a bowl of ice cream, all of which she did with her eyes closed and a great deal of protesting. Even washing her face with her PCA was difficult.

Last night at family prayer we discussed our next steps, what the future might look like. We always have two of us “on shift” now at the house as Mom’s health fails further. We reviewed the hospice protocols with everyone and talked through what Mom’s funeral will look like according to her pre-planning.

Today, Mom woke up at about 8:30 and has been a bit more more wakeful. She has eaten a few bowls of ice cream and an egg with most of a piece of toast. She is also drinking again. The PCA says that the back and forth is to be expected at this stage of the hospice journey. But it does seem with each occurrence she slips a little further away from us. Even her “wakefulness” is different from what it was a week ago.

Amanda and I are on shift today. I have been sitting quietly with Mom as she naps and have begun going through old pictures.

Our family back in the day at a Women’s Club old fashioned fashion show

The time is drawing closer, I think when we will need to be putting these pictures together on memory boards.

It is a bitter sweet time as I rehearse memories, retelling myself and the kids the old stories of our family in this place we call the Vicarage. It is a sad time. It is a sweet time. It is violent with inevitability and quiet with a rhythm that feels so deep…so poignant. I sense this quiet planning time is some of the most consequential time I will ever spend.

NIGHTTIME HALLUCINATIONS

February 28, 2024 / joseph elon lillie / Leave a comment

The last few nights have been difficult for Mom. She has been having a hard time sleeping. Last night when she did sleep she had vivid dreams that spilled over into waking hallucinations. We had chickens dancing on the ceiling and great anxiety over the house running out of oil. Haloperidol is one of the medications that is helping us through this part of her illness.

It’s Sabbath today and so I am spending some time resting in prayer. Mom has been a bit more restful throughout the morning so that has been helpful. Here are some quotes about reality I am thinking about today.

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WHICH QUOTE SPEAKS TO YOU?

THE MAKING AND KEEPING OF A SCHEDULE

February 23, 2024 / joseph elon lillie / 2 Comments

At this moment, Mom is sleeping. She ate her first solid food in six days a little while ago. a quarter of a ham salad sandwich and a few chip crumbs. Amanda and I are sitting watching Murder She Wrote (the key to creating an atmosphere that keeps Mom calm).

Mom requires a two person assist since her last bout of illness. So I spent this morning making and sending out the weekly schedule to our family to make sure we have the proper coverage every day.

We have never kept a sedate schedule at The Vicarage. While our hours, as ministers and teachers, are flexible for the most part there is still a lot to do. While we have lots of hands in this work (and I am blessed for all the help). Each set of hands comes with an added layer of complexity. Keeping Joe and Kristine’s work at their schools and Amanda’s, Brenda’s and my visitation and preaching schedules in mind means scheduling takes some consideration.

Melanie and James are coming over a few times next week to make sure Brenda is not alone while Amanda and I are out at staff meeting.

I am also working to make sure the whole family is in the know about times and schedules for the PCA’s and nurses.

I am really thankful right now for Paul Hackett who trained me in scheduling all those years ago. I am also thankful to his wife Carrie, my personal assistant at church who has kept my schedule at church organized.

I know that in the days ahead communication is going to be a key to keeping our sanity and to giving Mom the best quality of life she can have now. That is the penultimate goal at the moment. Well, I just got an alert than Megan is about to arrive to help Mom with her daily wash up. So folks I am off. Keep us in your prayers as I keep you in mine.

A HARD RIGHT TURN

February 21, 2024 / joseph elon lillie / 6 Comments

Life took something of a hard right turn on Monday.

As regular readers will know, Mom started with hospice about three weeks ago. She started sleeping a lot on Saturday and Sunday and eating almost nothing. We also saw an increase in her pain level. Then on Monday she became very nauseous and her pain level spiked beyond control. She started vomitting dark black liquid. The nurse came out to help us, the doctor called and we made some adjustments to her meds. It was an intense 24 hours in which none of us got much sleep.

It seems we have moved very quickly to a new level of hospice. We now have the hospital bed mom had been resisting in house and the old couch she loved sleeping on removed. We have asked for and I think received an upgrade in PCA care to five days a week and today the doctor is coming out to review Mom’s meds to make sure we have what is needed for her comfort.

Dr. Harrington, the director of the hospice agency, is actually one of the doctors Mom worked with during her career as a nurse. She remembered him.

Today she is looking and feeling much better, but in the last few days Mom has eaten nothing more substantial than two or three scoops of ice cream. She seems to have no appetite for solid food. Good news… She has been drinking her Pedia-lyte and rehydrating. She is very weak. Walking to the bathroom is not at the moment a possibility. Thank God for all that has been provided in the way of adaptive tools, the transfer chair and commode my cousin gave us have been a life saver, and the hospice meds have been so helpful in keeping Mom comfortable.

I can’t say enough about the hospice staff who have been helping us through this season. They have all been so kind. I also am also so blessed by family and my congregation. So many in the church have reached out with offers of help. My friend, worship leader and deacon, Jody came to help me and my son, Joe, move the couch yesterday. My family, also, has really circled the wagons during this season. We all gathered and prayed together last night with many tears and much hope that God would see us through this life stage with grace and love.

Regardless of the hard right turn, I know God will see us through and we will end up right where we are supposed to be.

LOTS OF REASONS

February 2, 2024 / joseph elon lillie / 4 Comments

I have been thinking about my grandmother a lot lately. One of her statements, in particular, keeps coming to mind. “There are lots of reasons to go to church, J. It’s not always about God.”

Now…God is the reason the church exists. He is the center of it all, but my grandmother was not wrong in her assessment. In and through the church God provides many things that are essential for life. One of those things is community. For most of my life and ministry, I have downplayed the need for community to my shame.

This week we met with a hospice agency for Mom’s care going forward. Truth be told, I have been pretty stressed out, grieved and weighed down by this. In spite of all that I am doing OK…because of my family and my church community.

During the course of ministry, I have had the opportunity to meet many people who do not have the benefit of healthy family or community of any kind. They often come to the church in an hour of desperate need because they have no place else to turn. It is not that they have relationship with us at all. They come to us because they have no one else to turn to. Often by the time they reach out to us there is little left we can actually do. I often think though “If only we had known them when the issues were smaller, we maybe could have helped.”

I will be the first to attest to the fact that church life is not perfect. Our communities, all of them, are imperfect. BUT…I can say with certainty that my life and my family’s life is stronger because we have been part of this church that we minister in and have been ministered to by. My family is strong enough to see Mom through this season of her life because we are part of the church and have our faith and our community to draw on. This is hard, but we will walk through it and come out stronger on the other side. I can credit the church community for the health of my family. I can credit the church community for the health of my spirit and mind.

This morning one of the men in the church reached out to me, as a friend, offering to help in anyway he could. He did that because I am a part of this community.

I cannot imagine facing this gauntlet, called hospice, without the wonderful tribe God has placed me in. There are lots of reasons to go to church. Knowing God is perhaps the most important reason, but a close second is the power of community.

Notes From the Vicarage

A minister's family living in a micro forest garden

hospice