Hanging out at home

Less than one month ago, we didn’t know a thing about pancreatic cancer, and we certainly didn’t know it would come crashing into our family like it has. But today as I walk through our cottage, I see a hospital bed and bedside table, a cane, a wheelchair, a shower seat with hand-held shower arm, a “lift” chair to help a person get up, a giant bag of pill bottles, rubber gloves, a urinal and, being delivered tomorrow, a triple-purpose commode seat. And most shocking of all, leaning against Nate’s chair, is a thick, navy notebook full of pages that says “Hospice Home Care.” Unbelievable.

Today we got acquainted with two new Hospice ladies, one a social worker and the other a nurse. The social worker began her process of getting to know our family by asking many questions. When she finished, she offered their massage service to Nate, who hesitated. His entire trunk from chin to legs is sensitive to the touch, coupled with his fear that if touched too hard, it will hurt. Every organ is affected by the cancer, and the thought of being pressed by a masseuse was about as appealing as climbing into a boxing ring.

Since Nate was too tired to explain, I described what was going on inside his body, stumbling for a succinct reason why he wouldn’t want a massage. Linnea interrupted and said, “Mom, just say ‘no’. You’re allowed.”

Her comment was a relief. I’m learning that Hospice is all about making our loved ones comfortable, not just Nate but the whole crowd of us. Before the social worker finished, she was offering me the massage service. I looked at Linnea who said, “Say yes!”

Today’s nurse gave Nate a physical exam, and his blood pressure was good, 122 over 85. He’s stopped losing weight, although I think it’s because he’s holding fluid in his abdomen. Having become bone-thin, he suddenly has a bulging stomach that feels like a giant water balloon. The rest of him is getting leaner and leaner.

One leg and foot are also filling with fluid and when asked, Nate acknowledged it did hurt. I told the nurse he never complained, and this was a perfect example. His sock gripped too tightly and made an indented circle of constriction where the elastic gripped. “Can we cut them?” the nurse asked, and I disappeared to find a scissors.

While Nate watched with a frown, I cut a 4” line down the front of his sock so it could slide on without being too tight. “Let’s cut the other one, too, so he’ll have a matched pair,” I said, trying to ease Nate’s fears.

The nurse also ordered a different mattress for the hospital bed, one that would “undulate” while he slept, to keep his skin happy. (I am jealous over that mattress.) The bed motor is purring, a fan is humming, tiny green lights are flashing and the whole place has all the conveniences of a hospital. But we are at home. The greatest blessing of today is recognizing that.

Our family hope is that we can keep Nate at home with all of us in these peaceful, familiar surroundings for the duration. To hear children laughing, to smell stew in the oven, to see the glory of colored leaves out the windows and to hold hands with the ones you love most are the delights of these days. But we’ve long since given up trying to control our uncontrollable circumstances. If God wants to pluck Nate from this cottage and put him in a hospital, he’ll do it for a good reason. And whatever God does, we are behind him.

“The Lord’s plans stand firm forever; his intentions can never be
 shaken.” (Psalm 33:11)

End-of-life issues

Why is it so hard to talk about end-of-life issues? For people who believe in eternal security with God through Jesus Christ, discussions of death and dying ought not to be shunned. And yet, we do that.

After Nate’s 14th and final radiation treatment today, we met with his doctors and signed off. They’ve done everything they can for him, and our questions have all been answered, at least to this point. Saying goodbye was not sad, though, since it means we no longer have to drive from Michigan to Chicago and back, five days a week. Nate was thoroughly exhausted after today’s treatment but was pleased Lars had chauffeured us and shown interest in inspecting the massive radiation machine worth $3,000,000.

We made it back to our Michigan front door just as a Hospice Home Care nurse was arriving for our official sign-up. Pat and her team will help us navigate the next phase of our journey. She was efficient and experienced, plowing through a stack of paper work quickly. Although she addressed her presentation to Nate, he sat facing her with eyes half closed, worn out from the morning.

Toward the end of her explanation of services, she said, “Now we come to the hard part, the living will.” Pat waited patiently for the words “living will” to sink in. Then she said, “The question is, if you stop breathing, do you want us to resuscitate you by using a respirator?”

Nate didn’t have to think very long. Without saying a word, he shook his head “no”.

I rephrased the question and then said, “Are you sure?”

Again he didn’t say a word but with a somber expression nodded his head “yes” and reached for her clipboard and pen.

Sitting with us and listening to this question and their father’s answers were Lars, Linnea, Klaus, Louisa and Birgitta. “I’ll need two witnesses to sign as proof that Mr. Nyman’s signature is his wish,” she said. At least I think she said that. My ears were ringing and my vision was blurring.

Lars and Linnea stepped forward to sign under their dad’s curvy signature. As I became weak on the sidelines, both of them demonstrated great strength under enormous pressure. As for me, I was lost in the picture Pat had just described.

All of us cling to life. If things are going well, we eagerly want that to continue tomorrow. If things are going poorly, we hope tomorrow will be better. For us, the days are not getting better, and no one is telling us that they might. My new question is, when can we start talking about heaven? When will it not seem like I’m pushing Nate away to talk about his leaving us?

We moved through the remainder of our day with a busy dinner hour, the two grandbabies providing our entertainment, but I kept one eye on Nate. He’d lost all facial animation, all spark, even when little Skylar, just learning to talk, pointed to him and said, “Pa-paaaa!” with a lilt in her toddler voice.

Tonight, sitting on the edge of his hospital bed and holding his hand, I thought it might be time to crack open the door to eternity. As we do each evening, we quoted Scripture together. John 14 was on my mind, a message of comfort spoken by Jesus to his best friends:

“Let not your heart be troubled: you believe in God, believe also in me. In my Father’s house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there you may be also.” (verses 1-3)

Nate closed his eyes, repeating only a word or two with me, but he made no objection and didn’t furrow his brow. I think the time has come to lift the ban on talking about his going away and shine a spotlight on his brightest hope. The truth is, he will go there soon, and there is no better place for him to be.

Take heart.

As we readied for a short church service in our living room circle this morning, I thought of the thousands of families readying for church all over the country. We’ve not been to a “real” church since we got the shocking news of Nate’s pancreatic cancer less than a month ago. He’s not been up to going, and we all want to stay with him. I wondered how long it would be before we… or I… went back.

As we cleared our cluttered kitchen counter to set out eggs and toast, we found another Scripture rock tucked next to the microwave: Psalm 27:5.  We get to eat in our church, so we gobbled down breakfast while our daughter-in-law Katy opened the worship service by reading the rock-verse. For in the day of trouble, He will conceal me in His tabernacle. In the secret place of His tent He will hide me. He will lift me up on a rock.” These days are an earthquake of trouble, to be sure. How good to know God can and will lift us onto solid ground. After praying, we listened to one of Pastor Colin Smith’s sermon CDs. The subject was love.

Later in the afternoon, I needed some time alone, a rare commodity for any of us in our crowded cottage. I’ve not wanted to leave Nate’s side since the diagnosis, especially lately when he’s kept careful track of whether or not I’m in the room. But while he dozed comfortably in his chair, I found a leash and walked Jack to the beach.

As we paced along the shoreline, a tremendous sadness settled over me like one of those lead aprons the dentist lays on people before taking an x-ray. It felt too heavy to get out from under. Although I’m resigned to Nate’s cancer and the devastation it’s causing in his body, today the whole dilemma seemed extra sad. I wasn’t mad at God. He’s been loving and gentle with us every single day. But the thought of losing our favorite husband, father and grandpa overwhelmed me.

I hadn’t planned on picking up stones today, yet as Jack and I shuffled along, the strangest thing occurred. My eye, following the line of rocks along the edge of the waves, fell on a rock that was shaped like a heart, first one and then another… and another.  I put each one into my coat pocket, commenting to Jack at how unusual such finds were.

The more hearts I found, the more my spirit lifted. We walked half a mile or so until my pockets were bulging, dictating it was time to turn for home. Spreading out the bounty, I was astounded to find a heart-rock for each member of the family, including our three unborn babies, and especially including Nate. It was as if God was telling me, “I’m not going to let you ‘lose’ Nate. You’ll always know exactly where he is: with Me. In the mean time, remember how much I love you and yours… times 16!”

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What is man, that You should magnify him and that You should set your heart upon him?” (Job 7:17)