Hospice, week 7

Susan’s progression of more sleeping and less waking continues since last week. The past few days she’s had fewer meals, either from sleeping through mealtimes or losing interest in the meal she’s having. Her hospice nurse encouraged me not to worry, that she really doesn’t need more than one meal a day. It’s hard to know how much time she has at this point; but I know one can linger only so long without food and even less without water. I know that as Susan’s journey takes her toward Heaven, food and water will become less important to her.

That said, today she had several awake periods and ate three meals. She had a good day. She smiles easily when she wakes up and still never complains. Our messing around is muted; but she still giggles when I tease her. That’s because when we mess around, we don’t mess around.

I asked Susan the other day if she’s ready to go to Heaven. She said “yes.” Curious, I asked if she thinks she’ll go to Heaven soon. Just like you and me, she couldn’t answer. I asked if she’s scared. She said “no.” I love her courage and trust in God.

I’ve been praying Psalm 63 for Susan this week. David wrote these words in the Desert of Judah:

¹ O God, you are my God, earnestly I seek you; my soul thirsts for you, my body longs for you, in a dry and weary land where there is no water.

Susan’s soul thirsts for God and her body longs for relief in a weary land, our restless world.

² I have seen you in the sanctuary and beheld your power and your glory. ³ Because your love is better than life, my lips will glorify you. ⁴ I will praise you as long as I live, and in your name I will lift up my hands. ⁵ I will be fully satisfied as with the richest of foods; with singing lips my mouth will praise you.

She knows the God she worships. She knows his goodness. His love is her greatest treasure, and is one of the spiritual possessions she will take with her from this earth. The lesser things will stay here; but she’ll bring her great treasures back to the Lord with thanksgiving so they can celebrate together.

⁶ On my bed I remember you; I think of you through the watches of the night. ⁷ Because you are my help, I sing in the shadow of your wings. ⁸ My soul clings to you; your right hand upholds me.

Susan’s journey is so much more private now. Sometimes I find her awake at night, lying there quietly. She has thoughts that only the Lord knows. God truly is our help; we have no other. He gives us great peace, so much that we praise him under his unseen protection.

⁹ Those who want to kill me will be destroyed; they will go down to the depths of the earth. ¹⁰ They will be given over to the sword and become food for jackals. ¹¹ But the king will rejoice in God; all who swear by God will glory in him, while the mouths of liars will be silenced.

Cancer is a great disabler that is itself disabled. The lie of cancer is that it will consume you; but now I realize how limited it is. It cannot touch your soul. It cannot snuff your spirit. Cancer may so disease a person’s body that it cannot go on living – but cancer dies when the body does. Cancer loses. When Susan goes to heaven, she will glory in the Lord, forever.

Sometimes not here

The noticeable change for Susan over the past week is a slight decline to the point that she’s sometimes not here. She sleeps most of the time, often deeply, and is often weakly alert when she’s awake. When she is alert just after waking up, she doesn't have a lot of stamina. She's otherwise comfortable and sweet-spirited. Word-finding is really hard, so she doesn't talk much. I noticed the word “paraplegic” in her nurse’s notes, so I guess that’s true since she hasn’t walked in about three months. Medical terms can be jarring in their accuracy.

It’s weird that she’s sometimes not here. She slept through me repositioning her in bed recently. She slept during Adam’s birthday party with 15 guests. On Sunday, after sleeping all night, she slept through late morning. She slept through much of yesterday’s bed-bath with her nurse’s assistant.

Going on hospice is acknowledges that if someone’s about to commence the process of dying, you’re going to support it and not interfere. That’s a hard decision to make. That process on hospice means you’re sometimes not here; then I suppose it means you’re sometimes here but mostly not, and then finally you’re not here at all. I've noticed that Susan’s journey is becoming more private, something she has to do alone. That’s hard too, even though there's no other way. Gradually or all at once, being separated from someone you love is just really hard.

The Fairfield Four sing, “You got to walk that lonesome valley, you got to go by yourself… ain’t nobody else gonna go there for you.” That’s another jarring truth even without the medical terms

The other day I thanked the Lord for being my shepherd, so there’s nothing I will want. I thanked him for making me lie down in green pastures, because I needed that rest. I thanked him for leading me beside quiet waters and enjoyed the sounds I heard. He refreshes my soul. I thanked him for guiding me down the right path for my good and his glory.

I thanked him again that his presence, his perfect love, casts out all fear from the valley of the shadow of death. I thanked him that while it’s a lonesome valley, he’s there with his strong hand to lift and guide and comfort. I thanked him again that the reason it’s the valley of the shadow of death and not the valley of utter darkness is his light. His light gives vision and means the gloom is only temporary. 

"Because you are my help, I sing in the shadow of your wings. My soul clings to you; your right hand upholds me.” Psalm 63:7-8

Strange joy

We enjoyed a nice Mother’s Day yesterday that started with breakfast in bed for Susan. Okay, so she has every meal in bed. Work with me here. She chose the bacon and cheese omelet over the oatmeal and relished a second course of vanilla frozen yogurt topped with fresh raspberries and blueberries, drizzled with boysenberry syrup. Later, instead of our traditional lunch at Randy & Dorothy’s, everyone came over for mid-afternoon dessert so Susan would be included. It was good family time.

I recall Mother’s Days past, when the kids and I would work furiously and secretly in the kitchen to prepare a partially elegant meal while Mom got ready for church. If there were fresh berries and something sprinkled with powdered sugar, it was partially elegant. We’d try to catch her after her hair was done but before she got fully dressed so we could coax her back to bed for the surprise delivery. I remember the kids gushing with excitement for the special presentation of breakfast and cards and flowers, and how their anticipation met with delight that she was enjoying what we’d prepared.

This year was different, like so many things for our family. Susan remains stable, neither improving nor declining. She knocked back a urinary tract infection this week with antibiotics and knocked back several more severe headaches with morphine. Like always, she’s in good spirits and is generally most alert just after waking from restful sleep.

Now in week 5 under hospice care, things have progressed differently than I thought when I didn’t know what to expect. I guess I still don’t know what to expect; but we’ve all gotten used to Susan’s bed in the den and the quiet routine of attending to her. Life on hospice in week 5 is strangely normal, strangely joyful, and strangely open-ended.

“Strange joy” borrows a title from Bob Bennett’s latest album, Joy Deep as Sorrow, a recording I recommend highly. The song speaks of peace in the middle of trial and “strange joy, barely understood, that from the night of trouble dawns the day of good.” We’re in the firm center of that mystery, with Susan not really dying but not really living and with us not really grieving but not really celebrating. We’re waiting for weighty things to transpire that are orchestrated by loving and unseen hands according to a divine timetable, while God’s people attend to us in prayer and with acts of kindness. We’re waiting.

But the joy is real and the peace is real. They mock our circumstances, a situation that should bring sorrow and chaos. This strange joy from God makes it possible for us to be okay, really. It’s nothing new for him to dispense – we’re just among the latest of countless people who have latched on to the power and mystery of the Cross. He supplies our purpose for living, comfort when dying, and resurrection hope beyond the grave. I love Jesus’ words, some of his last, in John 14:19: “Because I live, you also will live.” The gospel is so simple. Today we’re okay, really. In faith, tomorrow we will be too.

Resting

Susan is resting. She woke up early, feeling well, had breakfast and got a clean gown and sheets. She asked for her glasses using words she couldn’t come up with two weeks ago. Now she’s resting. Yesterday she had a severe headache, took some pain meds and then rested. She rests a lot.

I’ve camped on Psalm 62 this week, which begins, “My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken.”

I love that Susan has found her soul’s rest in the Lord. I believe it’s the singular reason she’s prevailed in peace and strength for nearly six years under the decay of brain cancer. It’s why the ICU nurse asked her if she ever complains. She just doesn’t. She voices pain when she hurts too much; but her resting soul prevents her from raging or railing against it. There’s a difference.

Our souls long for rest. We spend our lives trying to find it. As Americans, we’re particularly good at the pursuit and are invited to partake from the nearest TV, computer, billboard or radio: nicer clothes, sleeker cars, fuller lashes, harder-hitting entertainment, smoother beer and better investments. We buy it up because we can’t get no satisfaction. Really, we’re desperate for rest.

Susan’s pursuit for satisfaction disappeared overnight nearly six years ago. While fighting for her life, having a new summer purse no longer mattered. Neither did a new hairstyle, nor the HDTV. You may not have said we were overly materialistic; but it seems many of the things we valued proved unreliable for life’s foundation. Quickly failing when tested, our false supports gave way to our true foundation in God.

There’s a reason David says, “He alone is my rock and my salvation.” Rock is massive and immovable. It lasts, especially when compared to things of earth that come and go, things that rot or break, things we think are important. God is our mighty rock.

Salvation is the ultimate. What, or who, can save us? Who besides the Lord? Who else said he made us? Who else said he can save us? Who else has made good on every promise in spite of our attempts to explain him away? Who else, brokenhearted about our rebellion from him, offers us salvation and not annihilation? Who else offers provision and purpose on earth in exchange for our devotion – and the hope of heaven besides?

In light of all else that claims to offer what our souls need, God is a worthy refuge. “He alone is my rock and my salvation; he is my fortress, I will never be shaken.” He’s where Susan found her soul’s rest a long time ago. Heaven, whenever she goes there, will be just another form of it.

Hospice, week 3

We’re thankful Susan continues to hold fast in her third week on hospice care. She’s taking plenty of liquids and food and has none of the hazards that often come when bedridden for weeks, like skin breakdown or breathing trouble. She’s been a bit congested at times, but has responded well to her breathing treatments. She still has periods of severe headache and takes morphine only when she can’t stand it.

Her cognitive status remains mostly unchanged also; verbally responsive but not talkative and sleeping a lot of the time. She doesn’t complain, but remains sweet and pleasant. I haven’t observed any seizure activity or progressive decline one might associate with tumor growth.

In spite of her diminished state, Susan is much like she has been since her brain cancer diagnosis: here, at peace, and trusting in the Lord for his will and his timing. It’s such a strange existence for all of us, but one that’s become familiar, even normal. Our sons play Xbox games while Mom lies in bed a few feet away.

We know little else except that God loves us and has us in his hands, and that friends stand with us in love, prayer, and beautiful expressions of support. My constant prayer is, “Lord, have mercy on us.”