Mike and I are one year apart and have always shared a special bond -- despite his living across the country in California for most of our adult lives. So I was relieved when he volunteered to come home immediately upon hearing that Dad had been admitted into hospice. Mike would provide a sorely needed strong back (my sisters and I were able to do less and less for our 200-pound father) -- and moral support.
I expected Mike to arrive, listen to my summary of Dad’s condition, roll up his sleeves and wait for my instructions. I was dreaming. Mike is strong willed, opinionated and righteous. Sort of like me. He had his own idea of what should be going on with Dad. And it wasn’t dying.
Mike arrived on a Sunday, six days before Dad died. That morning, as he helped Dad to his feet from the recliner, Mike grabbed the walker and coached him to march in place. “Dad, lift your legs, it will make you stronger. Then you’ll be able to walk better.”
“What are you doing!” I tried to push Mike away, and he instinctively did the same to me.
We both calmed down enough to get Dad to the bathroom and back. Then we went in the garage to “talk.”
“Don’t you get it? Dad is dying.” I said, probably too matter-of-factly.
"You’re encouraging him to give up,” Mike protested.
“Mike, you’re not helping.” I stormed out of the garage as Julie, Dad’s hospice nurse pulled up. Julie had the glow and kindness of an angel, as did all of the nurses and volunteers we met from Seasons Hospice (866.752.0009) http://www.honoringlife-offeringhope.org/
Julie was also beautiful, and my dad didn’t hide his crush.
When she sat next to him and rubbed his arm, he asked her for a kiss. She didn’t hesitate. Then she took out her stethoscope and listened, reporting aloud that the “crackling” sound was progressing. She squeezed his wrist, his ankle, his abdomen and noted the imprint her fingers left. She took his blood pressure and indicated that it was lowering.
When she was done and put away her equipment, Dad asked her what he had asked me a few days earlier: “Am I dying?” I waited to see if she’d answer the way I did.
Mike stood in the kitchen, watching and listening. Good, I thought, he’ll take his cue from the professional and we can all be on the same page.
Dreaming again. Instead, Mike called Julie into the garage. “He doesn’t need to hear that!” Mike scolded. “You’re going to make him give up.”
Julie tried explaining that her long experience with hospice has taught her the best thing to do, when asked, is to be honest. It’s disrespectful, patronizing to lie about the inevitable -- when the dying ask.
Experts agree: “You have to be honest. . . . You have to answer their questions, but don't volunteer information for which they have not asked, because that means that they are not ready for it yet,” said Dr. Elisabeth Kubler-Ross, author of On Death and Dying.
Two weeks earlier, Dad’s nurse from Aquarius Home Health Care (586.576.1955) called me at work to give instructions on how to care for his leg wound. (A month earlier, Dad had fallen, gashed his leg on his walker and was finally home after weeks of hospital and rehab stays. Still, the gash wasn’t healing and edema was moving up his body from his legs.)
I asked the nurse to repeat the instructions, trying to write them down. She started, then stopped. “Your father is at the end of his life,” she said softly.
“I know.”
That night, a Friday, when I arrived to spend the weekend as I had most weekends for the past six months to care for both parents, I talked to Dad about hospice.
“Will it rush things?” he asked.
“No, it may actually slow things down,” I said. “You’ll get more nursing care, and we’ll make sure you are comfortable and not in any more pain.”
“Ok, we’ll try it.”
On Sunday, Dad signed himself into Seasons Hospice care. The nurse explained that the fluid was moving rapidly into his abdomen, that we would see an equally rapid decline and that he would need 24/7 care. Everyone around the table offered what they could do. Brother-in-law Mark volunteered to renovate Dad’s bathroom into a fully accessible walk-in shower.
The kind nurse shook her head. “You won’t get it done in time.” We pressed her for a timeframe. Two weeks.
Dad was 90 years old, the quintessensial Italian patriarch. Strict, demanding and often grouchy, he had his distractors. Even those of us who loved him unconditionally and could laugh about his grumpiness, had barged out of his house a time or two, often in tears and vowing never to return. We always did.
But no one could describe Dad better than himself: “A miserable son-of-a-bitch,” he’d say, waiting for someone to object. When no one did, he’d laugh.
Of course, there was the other side. “When people think about me after I’m gone, I want them to say, ‘He could be nice.’”
Could be. That was the key. He certainly could be nice. And as I write this, that’s what I’m remembering. The times he was nice. The times he was fun to talk to and made my daughters laugh. The times he reminisced about his colorful youth proudly recounting his love of cars and crystal radio sets.
Two weeks. It was hard to grasp the time was coming when Dad would no longer be on this earth. It’s not as though we weren’t ready. It’s not as though he wasn’t ready. For the past few years, when asked how he was, he’d answer in his gruffest tone: “Still here.”
I called my five out-of-town siblings. They all wanted daily updates. Mike made plane reservations.
For the next week, Mike and I were side-by-side, taking care of every detail that we were physically able to. Mike began to soften to the hospice nurses’ instructions but still hadn’t reached the fifth stage: acceptance.
Dad, however, had. He asked to have dinner with my brother Dennis, with whom he had strained relationship for too many years. He asked for a big, rare porterhouse steak from “the store,” Biondo’s Market (13786 E. 12 Mile Rd., Warren, MI 48088. 585.773.3060), the store he opened decades ago and today is owned and operated by my sister Barbara and her family.
He talked openly about his own death, asking several visitors if they thought he was dying. (Interestingly, he only asked those he knew were strong enough to tell him the truth.)
One morning, Mike and I entered his room and found him sitting up in bed. “Mike,” he said rather cheerfully, “I didn’t die last night.”
The out-of-towners began to trickle in. Tom, my oldest brother, the dependable brother, the guy Dad leaned on throughout the years, arrived from Idaho on Thursday night, just in time to have a conversation. It may have been Dad’s last real conversation, because later that night, the rattly breathing began and he mostly slept from then on.
Mike and I continued to work together, but still disagreed on some details: When to give Dad morphine, how much to give him. Whether we should suction the phlegm from his heavy, rattly breathing.
But when Dad took his last breath on Saturday night with his entire family around him, Mike and I held hands.
Weeks later, on the phone, Mike thanked me for allowing him the “privilege” of helping our dad die.
“It was how he wanted it,” I said, not knowing what else to say. “He hit 90. He had all his kids and Mom with him. He was at home.”
-- Anne Marie Gattari, am.gattari@brightstarcare.com
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