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.