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Monday, January 1, 2018

Writing About Not Writing, and the Intimate Moments of Death

I’m writing about not writing because when you can’t write, you just start. And then more follows.  

I’m writing about the end. 

So many times I’ve started posts in writing or in my head, but my own nature has disallowed me from finishing or publishing because of a sense of incompleteness.  I want things to be tidy. A timeline. I don’t want to talk about something that happened at the funeral and then something that happened in the hospital. But I realize, now more than ever, that things things should... must come out, and it’s not necessary that I tidy them up for you or me. 

We went to the hospital, to be admitted to hospice care. 

I’d like to say that it was a measured decision: he’ll die soon, and so we need to have round-the-clock care when that happens, to make him comfortable and do what needs to be done. It wasn’t that. I had reached my limit with observing and diagnosing and handling Ian’s decline on my own. In a very short time Ian had gone from eating and saying confused words for me to interpret into meaning to lying askew, constantly listing, eyebrows not raising and lowering with thoughts or understanding, no natural inclination to opening his mouth to spoons of applesauce, and generally not taking in the things going on around him.

He started to make the breathing/choking noise, which in its very early stage was hard to distinguish between “he needs to cough” with what I have of course come to know was the oft-used term “death rattle.” I wanted him to cough. I wanted him to help me help him sit up. I wanted him to focus his one good eye at me as I talked or attended to him ... but these things ceased to be. 

So in desperation and exasperation, I called the hospice team. They sent an ambulance immediately. 

It didn’t feel like “this is our last trip.” I didn’t have any “finality” thoughts ... just ... here we go, into the ambulance. I didn’t think anyone was going to fix him, or that we were going to somehow return to the house in a more stable condition... I didn’t have those thoughts. Just: This is next. This is what we need to do. And so we did. 

The women at the unit were lovely and gracious and sweet. While they situated him in his room, they took me away to do intake paperwork and interview. I remember resenting the time it was taking them to hook him up to things and WHAT WERE THEY DOING IN THERE AND WHY CAN’T I GO IN? and I HAVE ANSWERED THESE QUESTIONS SO MANY TIMES but I sat with a nurse and went over his history, his medications, his current condition. I remember pleading with her - “it’s been so long since he’s had a drink of water. I know that it’s not necessary at this point ... I just feel like if you could maybe give him some fluids?” and she explained to me that it would actually do more harm than good to do so. I knew that. But I also didn’t. 

When I finally entered his room, my dad had beat me to it. He sat, always stoic, in a wooden-armed hospital chair, gazing at the man he’d come to love as a son. I was immediately grateful that the nurses had obviously cleaned him throroughly, changed him from a hospital gown into a respectable man-shirt*.

He was awake. Truthfully a bit more aware than he had been when we left the house. Slightly elevated and surrounded by sheets and an actual blanket. I sat down beside his bed and held his hand. 

“I love you.”

“I love you, too.”

“I hate your school.” **

“I know.”

His eyes closed at some point, and dad and I talked quietly about I have no idea what. The nurse returned to say that there was a suite we could move to so we would all have comfortable places to sit. We changed rooms, and I called his mother. 

“We’ve moved Ian to the hospice unit at the hospital. I don’t know that he has hours or days, and you don’t need to rush here, but that’s where we are.”

She was, at that moment, at the hospital with her father, who had just suffered a massive stroke. I told her to be with her mom and dad and that it was okay ... she declined and said of course that she’d be right there. 

At the suite, there was a couch-bed, a table and chairs, a telephone, a television maybe? lamps, an easy chair ... such a far cry from the hospital rooms and waiting areas that it was like entering someone’s home. I lie down on the couch, scoping out my spot for tonight; I would curl up here and try to rest. 

Carol and her husband arrived. She sat as his bedside and talked to him ... I honestly don’t know if he was talking at that point; it was a separate room with a door. I felt like that time was private to them and grasped at some kind of “settling in” feeling. I looked at at the recliner: my dad has slept in a recliner for years at home, as it provides the most support for him and he has trouble in a regular bed. Carol and Dale had decided to stay the night, and so I looked at my dad, who had spent COUNTLESS nights asleep in an ICU chair (barely more than a folding one), and told him to go ahead home. Dale could sleep in the recliner, and I would camp out here on the couch. Carol had the nurses bring her a mattress for the floor beside Ian’s bed; she, too, was exhausted, and didn’t want to leave Ian’s side. She fell fast asleep.

I think there were phone calls and texts in there - letting everyone know where we were and what was going on. There had to have been, but I don’t really remember them. 

Lying there on the couch, I could hear Carol’s snore, Dale’s snore, and Ian’s non-snore snore. It was a loud, awful drowning noise, but it was rythmic. I drifted to sleep.

At some hour, a nurse came in and said, “he’s had a decline. we thought you would want to know.” 

I went into his room - the lights were very low. They explained something about oxygen levels or breathing or some kind of indicator that things were progressing. I asked that they move him over and I crawled into bed, under the blankets, curled up beside him for the first time in months. His body didn’t shift and accommodate; it was an odd feeling, knowing no matter how much I squirmed around, he wouldn’t do the half-awake adjusting one does when curled up in bed. His breath-noise continued. I put my hand on his chest. I talked to him ... I told him I was there and that it was okay and we were all going to be okay and that I loved him. I sang him our wedding song, over and over. I stroked his cheek. I fell asleep, I guess, off and on, becoming startled at a louder exhale and noise. I put my hand over his mouth, in a dazed effort to calm him — to make him stop making that horrible sound, I’m sure, but also ... it felt like it was such a struggle for him. I wanted him to stop struggling. 

I woke up to quiet. I sat up a bit and looked at his face. I could still see him breathing and felt his heart and warm skin. It was around 5am. I sat up and looked at my phone - lots of messages from lots of people. Love and love. 

I turned and watched him... and soon I just knew. I put my hand to his mouth, I tried to feel his heart, I strained my eyes to look and look and see and sense and feel ... I laid back down and sang again. I stroked his cheek again, and did I imagine it felt cool? DId his lips look a different color? The sun was breaking and the morning color ... I’m not often aware of sunrise light. I texted my parents: “He’s gone.”

I pushed the button for the nurse to come. She softly entered, held his wrist, looked at him, and told me that he had passed away. Just as she was doing so, his mom stirred and stood. 

“He’s passed away.” She burst into tears. “Oh, no.” she said. What else is there to say? It doesn’t matter that it’s not something to be denied. You’re not in denial. It’s just NO. 


I didn’t often lie with Ian in hospital beds. Sometimes he was in dire straights, and there were too many wires and not enough space. Sometimes he was at home and resting comfortably and I didn’t want to disturb him. Or we had visitors. Or I knew I wouldn’t be able to get sleep I desperately needed. Or something else needed my attention. In the months preceding his death, I had begun to separate myself from my best friend, lover, husband and companion, and had become his nurse. It was an awkward friendship; I’d do absolutely anything for him, and yet I pulled back affection. His love language was touch, but the most he received from me was physical care and medicine administration. Why didn’t I just crawl into his home hospital bed? Because I just couldn’t. 

And that makes me sad. 

I am forever grateful for Ian’s mom, Carol, for taking this picture.

*a wonderful thing that hospice does for patients is to cloth them as normally as possible. They take garments and cut the backs out, using Velcro closure, so the patient can lie in a comfortable nightgown or polo shirt. This is a beautiful thing. 

** an unfortunate part of our shared cultural vocabulary was the entire contents of an ill-conceived Adam Sandler comedy album, committed to our adolescent memories. In one of the less raunchy routines, Sandler imitates a cheerleader frustrated with a pep-rally audience who refuses to participate. In a final sobbing tantrum she yells, “I HATE MY SCHOOL!”. It’s a phrase we used frequently to express discontent at far less serious situations. It became the last phrase I uttered to Ian with his eyes open. I do not regret this, as it is amusing, but it IS a little awkward to explain 😃 

Monday, September 26, 2016

I don't consider myself particularly sentimental.

On Ian's birthday, I didn't have the sads; truth be told, I didn't think of it as any different of a day. Others did, however, and reached out. (Bless you, friends. I appreciated it very much.)

Last month I visited my grandmother. After our chat, we got up to leave, and I told her we'd be back again soon.

"Sounds good," she said. Exactly the same words, in the same cadence, that Ian said often, in response to many people and things in the last months of his life. It was his go-to, reflexive response because in the end, he wasn't capable of translating thoughts into speech. "Sounds good" rolled off the tongue as his default "see you later," or "okay."

My grandmother's innocent statement brought a white-hot flash across my face and into my chest. It was a weird, completely unexpected association. I'd prepped myself: Don't think about nursing facilities and equipment, don't look for decline and neuro deficits. Just visit with Gramma. But those words reached out and grabbed me from the depths of memory and sensory and sucked the air out of my lungs.

For just a second.

I think my sadness is about the illness itself. How it robbed him and us. I HATE the things that represent Diminished/Ailing/Failing Ian. I don't want to remember medical supplies or altered facilities or his swollen face because those things supplant memories of Well Ian. Healthy, happy, smart-ass, giggling Ian. Right now the last months' hardships cloud the previous, joyful memories. And that pisses me off.

As we sat at the dinner table on his birthday, I offered: "I thought that since today is your dad's birthday, we could go around and share a memory we have of him."



Audrey recalled he had a bowling ball cake last year.

His own life partner of 20 years was stumped to recall a single happy memory. The nothingness stung.

I think my brain is protecting my heart. If I conjure and dwell on the things I remember, or the things we'll now never get to experience, it will crush me. And so God has given me only small bits of grief on which to chew.

Sounds good.

Thursday, September 8, 2016

Even Less Sugar: A Graceful Goodbye

It’s been almost two months since Ian’s memorial service. I’ve tried several times to post about the beauty of the day and what it meant to me and my family … but I have come up short. Instead, here are some photos of the grave-side military honors, followed by a link to the service itself.

What you WON’T see is the way my kids carried themselves, culminating in each of them getting up at the reception to speak in front of hundreds of people about their dad. MY KIDS ARE AMAZING.

photo credits Greg Pelka

Thursday, July 14, 2016

Even Less Sugar: The End

As I assume you will have heard by now, Ian passed away, one week ago.

I've been avoiding this post, not because I have been unable to put words together, nor because I have been too wracked with grief to journal my thoughts ... but because his last days were both pain and beauty and private. As public as I have been, via blog and Facebook, etc, there are some things that will remain small and close and intimate.

-------------- some timeline ---------------
On Wednesday, Ian still had quite a bit of fluid and an awful, drowning cough. I started to witness "seizure activity," something he'd never experienced before. The last straw was when friends moved him up in bed, and he finally got a cough out ... but it contained blood. It was clear my ability to handle this at home (read: alone, overnight) was done, and he was transported to in-patient hospice.

The nurses deemed his breath "extremely labored." It sounded like a snore ... but in double time. And loud. In the middle of the night they woke me to say he had experienced another decline. They helped move him, and I spent the rest of the night by his side. At 6:30 I realized I hadn't heard that awful noise ... I sat up a little ... and I knew. I held tight. I sang him a song. I called the nurses in and they confirmed.

It was surreal, and horrible, and beautiful, and cold and warm and sad. I didn't sob. I breathed.

------------ [private family grief stuff] ------------

---------------------- logistics ------------------------
Ian was an organ donor. I made the decision a few months ago to pursue having his brain donated to the cancer center, in hopes that someone else would soon be spared this awful disease. (Yes, Ian was on board with donation of any kind).

We had many "final arrangement" discussions, and Ian had always requested whatever was "easiest and cheapest" ... the old "pine box or ashes dump" kind of conversation. Then he would look at me and say, "of course, you're going to do what you want anyway, so ..."  Funerals are for the living, and in our case, for the children; it is for them that I make these decisions.

So now I had thirty minutes for the actual choice; send Ian's body to Pittsburgh for the autopsy, or zoom to camp and back with the kids to say goodbye again*, negating the ability to donate but affording them the opportunity to see him. If I'm doing all this for the kids, what makes the most sense?

I chose the former; I didn't want to rush their grief. "Hi, I'm here, guess what happened, pack your stuff, let's go see him" just felt wrong.

----------------- my amazing children ------------------
I had prayed and pleaded with God ("Please, God, let the kids get through two weeks of camp - to be kids, make friends, have fun, and to not associate camp with me coming early because Dad died.") I had the "gathered at bedside at home" picture. The final words thing.

And God said, "How about this? How about I have them go to camp, meet new friends, share their situation and be prayed over and loved on, still get to be kids in light of this trauma but be separated from those very last, non-Dad moments. You will bring them home and hold them close, but they will return to that fragile but deliberately constructed nest to again be loved on and prayed over by a giant group of Christian peers and counselors. And they won't associate HOME with his passing."

Ah. Right. It's the whole "My plans/your plans" thing. Noted.

So the kids came home, albeit reluctantly, that evening. We had a private viewing just for them at the funeral home the next day, and after choosing some happy Dad pictures, back to camp they went, munching snacks and grieving in little pieces but smiling as children should.

There are many things I could post about the things they said and did, but I will not out of respect. I will say this: I allowed them to grieve as they wished -- to choose what they needed to do and say and think. I honored, as much as possible, their desires both to be given space and to be held. And I assured them that all thoughts, including, "can we just get back to camp now?" are good and okay and acceptable.

---------------- prescriptives -----------------
Do NOT tell my son he's the man of the house, and to take care of mom. HE'S NINE. HE ALREADY HAS A COMPLEX ABOUT KEEPING EVERYONE HAPPY.

Do NOT tell my children how their "dad would have wanted them to" respond/live life/think of him.

Come to think of it ... just tell them you loved their dad and know that they miss him and that things are hard and it sucks.

Because it does.

----- the obit: summing up a life in several paragraphs -----

~our last family moment~

Friday, July 1, 2016

Even Less Sugar: Creeping Up on the End

Hello, friends.

Not long ago, we officially transitioned Ian to hospice care. The nurses are lovely and available, there is minimal disruption and chaos, and we are just at home, being.

That being, however, changes slowly but significantly, by the day.

Ian no long rolls himself to sleep on his side (his preferred position). He leans a bit and is unable to correct it. He has lost most interest in food.

Yup, you read that right: Ian + Food = Not so much.

He understands everything, and his face still responds to the appropriate emotions ... albeit a much less wide smile and sharp twinkle, they're still there.

But they are fading.

His eyes don't focus as much, so he has a bit of a walleyed look. His voice is a whisper, and unless it's a common response in context ("thank you," "I love you, too," "Sure," "Nope,"), there's little chance of understanding what he's trying to say. But he doesn't try too hard anymore, either.

Last night he seemed alert but confused. As I have done MANY times before (due to his short-term memory loss), I explained the reason he lies there, unable to communicate.

"We're nearing the end, hon."

Furrowed brow: "Really?"

"Yes. The chemo drugs stopped working. The tumor is growing, and that's why you can't brain or speak and why you might be confused about things. I'm so sorry."

Tears used to fall after this conversation, but yesterday he stared, blinked heavily, and stared some more.

I told him that I had no idea what my Ian would want to be sure I knew or considered or took care of at the end, but that he didn't need to let any of those thoughts trouble him. I have people taking care of the important things, and although we are all going to be sad and angry and depressed and lonely and hurt and hollow, we're going to be okay.

"Everything that you would say to someone before you die you've said. I know you love me, and the kids, and you want what's best for us, and you're sorry to be leaving us. You don't need to say any of that - we know it. Just be at peace, tell me if you're in pain, and let us take care of you."

I've discussed funeral and burial things with the kids. They've both had their private "tell Dad everything you want him to know and would regret not having said" conversations. MY. KIDS. ARE. AMAZING.

Ezra is the sweetest, most empathetic child I have ever met. He just wants "everyone to be happy," "knows God has a plan even though it's not what we want," and "we should have a train that runs through the entire house so it can deliver stuff to us" [proceeds to detail the route, in excruciating detail, through every room in the house, while sitting with me in the dark on the porch].

Audrey had a dream that Ian passed away and "I didn't get to say stuff, so I made sure I did." She is joyful and bubbly, and clings to me just a little (not her M.O.). She is pouring on the funny and laughter (yes, I know she's overcompensating and hiding the pain) to lighten the mood and cheer me.

They are both heading to camp on Sunday. For two weeks. Two VERY uncertain weeks.

Would you please pray with me that Ian holds on until they return? I'd like them to say goodbye in his final moments. I'd love for them to not associate yearly summer camp with Mom appearing way too early, walking up to tell them the sad news, and taking them home early. And if none of that is possible, please pray I parent well and according to their needs; that I'm able to share grief and hold my babies and absorb their tears. That I can point them to Jesus, Who does not falter or fail, without "sounding like the people who are supposed to say that" (guess who?). That I continue to make wise choices for our family in light of our new reality, and that people accept those choices with grace.

This long road will soon reach a bend, but will keep meandering through forest and field.

I miss my best friend. He wanted to do this hike with me.

Wednesday, June 8, 2016

Even Less Sugar: The Post We All Knew Was Coming

How do I write this post? Is there a gentler way to say we have reached the end of things?

Ian's last appointment showed no tumor growth ... however it also confirmed what the doctor suspected; the immunotherapy drug has had no affect on the tumor, and Avastin, the anti-swelling drug, is all that is keeping it at bay.

"And tumors figure out Avastin rather quickly."

Quickly, as in months.

So there it is: we have months.

We will continue to receive MRIs/treatments every two weeks, as Ian's able to tolerate the travel and desires to do so. At some point those treatments will not be beneficial, either, but I think we do them as long as we can. 

When the tumor starts to ignore the Avastin, decline will take weeks. There will be further cognitive and mobility decrease, but not necessarily any pain (at some point one would think the pressure would cause pain, but I'm unclear on that).

Yesterday was a decent cognitive day for us ... which meant a good talk, although it meant a substantive talk, as I have to take the opportunity when it arises to talk about important things ... and so it was a tearful talk. We went over the past year, as he remembers none of it. I showed him pictures on the phone that went along with events, both in and out of hospitals. Goat, I read your fb post following the reunion dinner; he said thank you many times and wept.

Monday there was a (no kidding) murder on our street. It was quite the distraction from the reality of our situation. All the commotion and excitement gave the kids some breathing room after I sat them down and discussed our coming weeks and months. 


I am tired.

But we press on ... this is not "news," even in its finality. Ian does not fear death and awaits meeting his Savior. He's just a little sad.

What can you do?

* Check in on us. If you've "been meaning to visit," do it soon
* Shepherd the kids. Please treat them like NORMAL KIDS plus a little tenderness. You don't need to "be sure they know you know" or are available to listen - they know Mom gets the word out and most people know. Don't ask about their dad. You can ask about summer plans, school in general, books, legos ... You can say, "how are YOU doing?" and give a glance ... But then let it drop. You don't have to "watch what you say" but if you could avoid talking about cancer or funerals or that type of thing, that'd be super.
* Fill needs as they arise, when you can (rides for the kids when I can't leave are most needed over the summer, and distractions for them as well, especially when things go "bad").
* Sometimes I need to blow off steam. Sometimes I do the ostrich thing, sometimes I do the sleep all day thing. Sometimes I really need some funny. (Really, I can almost always use some funny.) I know you don't know what to say. That's okay. Say it anyway - I promise nothing will be wrong. You can't help you don't know what I'm going through, and I wouldn't want you to. Just don't be silent for want of what to say.

If you want to contribute tangibly, I think I singlehandedly keep in business .... we can always uses GCs to that and Giant Eagle. We don't get out much, so GCs to local restaurants aren't of much use right now, and people are generous with providing us meals. Special porch treat surprises are always a beautiful hug for the day, as are flowers, now that they're blooming. Cards are MAIL! which is always good.

Be kind to one another. Small kindnesses and smiles. Keep perspective, in Ian's honor, about what matters, who matters, how you can show love to your fellow man. Hug your kids, smell the flowers, breathe the cool air. Ian would not want you to be sad for him, he would want you to wrap your arms around us and keep us afloat, and to pour out God's love to one another.

Wednesday, June 1, 2016

Even Less Sugar: Running Out of Respite

Hello, friends.

For the past two weeks, Ian has been working hard at rehab. This stint has looked different than others, as he has had some decline in ability and mobility, but still he has made measurable progress in some areas. 

I don't want to focus on the deficits other than to say: he doesn't walk, he transfers. He doesn't use his right arm/hand, but he can eat just fine with his left 😃 .

The biggest issue is, and will likely always be, his inonsistent braining. Yes, he has declined in this area overall, but its very unpredictable nature has made this quite the experience in navigation. 

Example: his physical fatigue is easily correlated to time of day and activity. Late in the day, don't ask him to stand much. Ok- good, we can work with that. 

But right out of the gate, in the morning, we have a 50/50 chance that his brain will be talking to his limbs. Is he able to follow directions ("move your right foot," "now sit down")? or are we going to struggle with each direction ("Your spoon, hon. Use your SPOON."  And if that's the case, (and this is important), how will things be in an hour?? 

In other words, we're up and down, day to day, as well as within the day. I say things like "good braining day," but that's oversimplifying this web of confusion we live in. 

On Sunday he will return home. He's anxious to do so; hospitals are lonely, and I think maybe much more so for someone who is frequently confused and/or has little short-term memory. (Not knowing what time of day it is, what day it is, who was in to visit, etc). 

Back at the house, I have people helping me getting things more Rev-Ready. An outside ramp is in the works, in-home therapy will begin, and we're still working on that stair glide and shower ... 

In short ... the hard work will begin again, in the home setting. I'm going to call on those who have offered to help so we can maintain sanity and maybe squeeze some normal into our days, at least for the kids' sake. 

(Caregiving burnout is a very real thing.)