The Fog

It's now been a month since my husband crossed the Great Divide between the land of the living and the arms of God. I knew it was coming, I thought I was prepared, I expected it at any moment, and all that. But still, when it happened, it was a complete surprise. My knees buckled as the nurse met me at the door to give me the news. I thought I was going to faint. It was like being caught in the middle of a breath. Time stopped. The Earth stood still. Everything seemed far away. Something escaped my lips. A wail? It felt like a bad dream, but it was real. Too real. Devastatingly real. 

Though I knew that in the blink of an eye he had transitioned from this life to the Next, the weight of a ton of bricks landed on me, crushing me. I had been praying for his healing and restoration, and now he was completely healed, but not in the way I'd hoped. He was gone. Gone gone. He wasn't coming back. And I was left behind. A woeful, overwhelmingly bereaved, blubbering mess. I could almost feel myself shrinking. The shock to my system was wholly unexpected. 

I had come prepared to stay, not expecting that he would leave so quickly. I had a cot, a pillow, my overnight bag, the ukulele. I had planned to encourage him, to pray with him, to play and sing for him. And so, our son standing next to me, I took out my music, pulled up a chair, took a deep breath, and selected a few of my husband's favorite tunes. My singing and playing were worse than usual, but I'm sure nobody minded.

The fog that settled over me that day, deepening daily, was all enveloping, saturating. I could not think. It was an effort to breathe. I wasn't even sure I wanted to. My heart hurt so much, I thought it would surely stop beating. I sort of hoped it would. I had already lost my father, then my mother. But those losses didn't even come close to comparing to this whole new level of excruciating pain. Of guilt. Of anger. Of confusion. Had there been a funeral pyre, I might have thrown myself on it. All I could see ahead of me was a yawning chasm of emptiness. Family and friends surrounded me in the most loving way, for which I am grateful. I'm not sure how I could have made arrangements without their help and prayers.

Because of COVID restrictions, we were allowed only a very private graveside service. It took place two weeks after his death. Though it was small, it was very beautiful and personal and comforting. When the children and I returned to the cemetery the next day to place flowers on the grave, I felt oddly at peace, knowing my beloved was at rest. I know I will see him again, but that doesn't take away the terrible sadness, the horrible feeling that half of me is gone, the gaping wound in the core of my being. I will have to walk through the crippling grief, and I'm told there will eventually be more good days than bad days. 

In the meantime, I have begun the necessary work that follows a death:  contacting various agencies and financial institutions, filing paperwork, making sure nothing falls through the cracks. The first two are routine. The third, well, I'm hoping for the best through the fog. I thought it was starting to lift last week, but now I realize I was wrong about that.

Thank you, dear readers, for your words of encouragement and support over the years, and especially for your prayers both during my husband's illness and continuing through the painful days ahead. Some of you have asked that I continue this diary through what you're calling my "healing process." I'm assuming that I will, at some point, heal. At least, that's my hope, because that's what people do. I just can't really envision that right now.

The Last Note

July 14, 2020

I got "the call" this morning. You know the one. The one you keep expecting but hope never arrives. I was to come right away, if possible. I rushed to my car and sped down the road (apologies to the highway patrol. Thank you for not pulling me over). I wanted to be there to hold his hand, to whisper sweet nothings in his ear, to comfort him. But he decided to go quickly, before I could get there. Yes, that was devastating, especially since I'd had a camp cot, pillow, and weekender in the trunk of my car for over a month, expecting (obviously) to be with him for however long it took, at the drop of a hat.

But here's the cool thing:  The music therapist was having a video call with him (you'll remember how he loved music therapy) and was playing and singing Paul Simon's The 59th Street Bridge Song:

Slow down, you move too fast
You got to make the morning last
Just kicking down the cobblestones
Looking for fun and feelin' groovy
Ba da-da da-da da-da, feelin' groovy...

And here's the other cool thing:  As she was singing "feelin' groovy," he and Jesus decided it was time for him to go Home. He passed from this life to the next,  just like that. He fell asleep here, and he woke up there (or, for those who believe a bit differently, he will wake up there). And now he's healed. He's whole. He's...feelin' groovy.

Rest in perfect Peace, my love. There can never be another you. I'll miss you until I see you again. The time may seem long for me, but it will be short, really. And then we will be together in the presence of the Lord, and time will be infinite. Eternal.

The Lord, the Psalmist’s Shepherd.
A Psalm of David.
(New International Version)

23 The Lord is my shepherd,
I [a]shall not want.
2 He makes me lie down in green pastures;
He leads me beside [b]quiet waters.
3 He restores my soul;
He guides me in the [c]paths of righteousness
For His name’s sake.
4 Even though I walk through the [d]valley of the shadow of death,
I fear no [e]evil, for You are with me;
Your rod and Your staff, they comfort me.
5 You prepare a table before me in the presence of my enemies;
You [f]have anointed my head with oil;
My cup overflows.
6 [g]Surely goodness and lovingkindness will follow me all the days of my life,
And I will [h]dwell in the house of the Lord [i]forever.

Footnotes
Psalm 23:1 Or do
Psalm 23:2 Lit waters of rest
Psalm 23:3 Lit tracks
Psalm 23:4 Or valley of deep darkness
Psalm 23:4 Or harm
Psalm 23:5 Or anoint
Psalm 23:6 Or Only
Psalm 23:6 Another reading is return to
Psalm 23:6 Lit for length of days

From Puree to Liquid

July 13, 2020

It's been about a month and a half since my husband's regular diet was replaced with pureed foods and thickened beverages. He's been drinking Ensure nutritional supplement, also, since his dramatic weight loss began.

The past couple of weeks, he's been having more and more trouble swallowing even the pureed foods. He seems to hold the spoonful in his mouth for a long time, finally chews it, and eventually either swallows it, spits it out, or chokes on it. For the past week, he has been eating and drinking very little and even "refusing" to eat at all, meaning he doesn't open his mouth or doesn't swallow the first spoonful.

Yesterday, one of the caregivers experimented with thickening the Ensure with just enough of the pureed food to make it the same consistency as the thickened beverage he usually consumes, eventually. He was successful in patiently spoon feeding a glassful of this concoction to my husband for lunch and dinner. He is attempting to do the same today.

I know that my husband will eventually forget how to swallow (or will not want to. Who knows if it's forgetting or refusing?). It looks as though that may be sooner rather than later. In the meantime, I've contacted the hospice nurse to see about changing his food "order" from a pureed diet to a liquified diet. It's worth a try.

Play a Song for Me

June 29, 2020

I've been trying to catch my husband awake, going to the facility to see him at all different times of day. Today, I decided to go later in the afternoon. He woke up for me! Yay! I gave him a facial, massaged his feet, fed him his dinner, played music for him. 

Our son happened to call me while I was there, so I put him on speaker phone right next to my husband's ear. The Hubster seemed to respond to that for about five seconds and even sort of smiled. It was very heartwarming, another memory to tuck away. 

After dinner, the caregivers came in and repositioned my husband, as I had mentioned that he seemed rather uncomfortable. When they left the room, I grabbed my ukulele and sat in the chair next to his bed. He went right to sleep as I played some soft, slow chords for him. He generally falls asleep after eating, so I don't think it was entirely to escape my playing.

As I was leaving, one of the caregivers thanked me for the beautiful music. What? I thought I was playing and singing super softly; but, apparently, I could be heard in the dining area, and a couple of the residents were really enjoying it. Golly. It made me feel so good to think I might have brought them a little joy. 

I'm reminded that the other day, the wife of one of the residents was visiting him through the window, and she saw me arrive with my music case. She gave me a big smile, telling me her husband had told her about me and looked forward to listening to my playing. She asked me to make sure he could hear me. I took her request with a grain of salt and assumed she was confusing me with the music therapist. But I guess she must have known what she was talking about, since it turns out he's one of the ones who was in the dining area listening to the tunes today. Who knew?!

End of Life

June 30, 2020

I have noticed that when the hospice nurse calls me with a report these days, she chats with me for a while and manages to inject "end of life" into the conversation somewhere. "When patients near the end of life..." "As the end of life approaches..." "This can be expected at end of life..." You'd almost think she was trying to tell me something.

A month ago, we were sure he was about to cross over to the other side. But he surprised us all and is still here with us, instead of there with Him. It would appear that it isn't yet his time, though each day brings us inexorably closer to the temporary separation that will feel so permanent, but isn't.

I think the nurse is trying to prepare me for that day, to caution me that it is probably coming sooner rather than later, to make sure I understand that it's an upcoming reality. Whether I like it or not, and whether I'm ready or not, in case I've been ignoring the signs or am in denial. I'm not and haven't been in denial (as you well know). Not lately, anyway.

At least, I don't think so. We shall see, when the time comes.

Sorry, Not Sorry

July 1, 2020

About a month ago, I ordered a bunch of hospital gowns for my husband. He was in bed all the time, t-shirts bunched up under his arms and up his back, and it seemed logical to get him something practical to wear in a hospital bed. So I did. Residents who are still up and about are encouraged to wear "regular clothing," but I didn't see the point in making him more uncomfortable than he already was. His clothes were hanging in the closet and hadn't been touched since the gowns arrived.

His right hand, in various degrees of swollenness since the end of April (when it was bright purple for no explicable reason), has been very painful and curled up since the fungal infection I mentioned at the beginning of June. Moving it at all, even to gently insert a rolled-up washcloth to absorb the moisture, causes him to wince and moan, and moving his arm hurts him even more.

Today, inexpicably, he was wearing a pull-over shirt when I arrived. There must have been a new staff member on duty who didn't understand the situation. Knowing the pain it causes him when I gently slide the half-sleeve of the hospital gown up his arm, I could only imagine the agony of having his arm pulled up to get that shirt on. I was appalled and paled at the thought.

I checked his closet, and there were half a dozen hospital gowns in there, waiting to be used. I went to the first available caregiver and asked why my husband wasn't wearing one of them. She had just come on duty and was horrified. She and another caregiver did what they could to carefully remove the shirt, but my husband let out a loud wail. He was in excruciating pain, the look of anguish on his face exactly what you might expect to see on a victim of torture.

Oh, dear reader. I couldn't bear it. My heart broke into a million jagged pieces, and I thought I might faint. Instead, I cried in front of everybody. Sorry, not sorry. I never expected that the end stage of this horrible, vicious disease would result in this level of pain in spite of medication.

Immediately after the carers left the room, I marched to his closet and removed his clothing, hangers and all, and packed everything up in his spare laundry basket to take home. If he needs it, I'll be happy to take it back. But, in the meantime, there's no way I'm letting that happen to him again. Not if I can help it.

No, it did not occur to me to take his clothes home before. Yes, I talked to hospice regarding his pain management. And, yes, I did march straight to the office to chat with the facility manager. And I cried again. Sorry, not sorry.

I'm Scared

Imagine yourself on your back in a hospital bed, the foot and head of the bed raised a bit to encourage proper circulation, unable to change position, unable to lift your head up, unable to hold onto the side rails. Your beloved is sitting next to you, and you're holding your beloved's hand, unable to squeeze it hard like you used to, unable to express yourself, unable to even keep your eyes open.

Suddenly, two people in uniforms enter your room, saying it's time to change you. Your beloved moves to the side of the room as these two people roll your bed away from the wall, flanking it, raising it up higher, lowering the feet and head. It feels as though you are being jerked around, even though they are being gentle and friendly. You hold onto your blanket desperately as they try to uncover you, to change you. What is happening? You are anxious. Using your bed pad, they turn you to one side, then the other, as they efficiently remove your soiled, disposable briefs and fasten the tabs on clean ones. You are indignant and complain the only way you can, by wailing.

Now, they say they are going to move you up in your bed. You are tall, and your feet are touching the footboard. They need to reposition you. They are standing over you, very close. They take hold of your bed pad and count one, two, three. You feel helpless as you are suddenly projected backwards, your head landing just short of the headboard. You whispered something towards the ceiling in mid-motion, your voice small, weak, raspy:  "I'm scared."

Your beloved hears this again as the carer repeats it. It's devastating, demoralizing. A punch in the heart. These are words you have never, ever voiced out loud, probably, to anyone. And for you to say them now, when you cannot really speak, makes them doubly tragic. Especially heartbreaking.

But of course you are scared, my darling. Anyone would be afraid in such a helpless position. When the carers come in, you don't know what they're going to do to you. When they turn you to the side, you don't know that you aren't going to keep going over the edge. When they move you up in your bed, it feels as though you are flying through the air backwards, and you have no way to break the fall you're expecting. You're completely at their mercy.

They leave the room, and I sit next to you again to calm you, holding your hand, stroking your cheek, your hair, whispering in your ear, "Don't be afraid, my darling. You are safe. I love you. God loves you. There is nothing to fear. Everything is going to be all right."

And it will. But not yet.