51

 

Two days after Dad’s birthday we get a snowfall of six inches, followed by another four inches. We’re stuck inside, but no one’s complaining because we’re warm, safe, and content to be in each other’s company.

Dad occasionally stays upstairs with us after dinner until bedtime, though now he falls asleep very shortly after we settle him on the sofa.

Nick has become too incapacitated to jump up next to Dad, so we bought some ingenious foam stairs sturdily constructed to provide support for weight distribution. At first, Nick didn’t understand what they were. When I attached a leash to his collar, gave it a gentle tug, and told him to “step up,” he did. He didn’t need to be told again as he stepped onto the sofa. Success! We all praised him, especially Dad, who’d watched with genuine interest. Dad puts his hand on Nick’s head. “We’re a couple of old fellas, aren’t we?”

It’s painful for me to look at Nick’s now-deformed hips. He can still use his hind legs, thanks to the Adequan and Tramadol that keep the pain under control, but his hips are bony and protruding. I’d talked to Dr. Froman about a total hip replacement, and even though the cost would be close to four thousand dollars, we would spend that amount or more if it would put our big boy right again. But the prognosis wasn’t good enough to outweigh the sheer misery Nick would be subjected to through surgery and recovery. And so we decided that with Nick, as with Dad, what time we have together should be about comfort, and comforting.

 

 

I’ve taken Dad to see his neurologist because of extreme lethargy and further diminished mobility. It’s becoming nearly impossible for Dad to stand or walk for physical therapy, and even Adam is admitting we may be coming to a point where that is no longer an option. He and Jennie continue with the massages and range-of-motion exercises twice a week.

Because it is hard on Dad to do four transfers—bed to wheelchair, wheelchair to toilet, then the reverse—I’ve put a porta potty next to his bed.

Nick also needs extra help him to relieve himself. We slip a dog harness through his back legs and around his hips so we can lift his back end. It’s a well-designed device that has put an end to David’s back strain.

Dad and Nick’s additional care is wearing on all of us, and I think it’s time to hire another person to help. I call Remembrance Care to ask what level of caregiver is needed at this point.

A lovely nurse named Marilyn comes to assess the situation. When her evaluation is finished, we sit down to talk over a cup of coffee and crullers. I always believe comfort food diminishes the angst of necessary conversations.

Too bad I’ve run out of Oreos. I’d toss them right into the middle of the table and gobble them up in front of David and God and anyone else at this point.

Marilyn doesn’t pull any punches. “I must tell you, I’m surprised you haven’t called in hospice.”

I rock back in my chair with such a thump that I hurt myself. David asks if I’m okay. I shake my head. No, no, no, I’m not okay.

She continues, “I see you last consulted with us in January. I wish you had allowed us to stay involved.”

“But Dad was doing well until just this week,” I counter defensively.

With a kind smile she says, “It may have seemed that way, but he’s declined quite a bit since January.”

“He’s had a lot of good days since then. He had a birthday just two weeks ago, and we had a party for him. He was good for hours.”

“And since then?”

“Well, he has been more tired, and as you saw, he can’t stand at all.”

“You’ve done a great thing by keeping the physical therapy going,” she continues, “but he can’t participate any longer. Even his porta potty is going to become impossible in a short time.”

“Why impossible?” David asks. “We can hire extra help.”

“His brain and his legs are not communicating any longer. You won’t be able to put him on the porta potty unless you lift him by his arms and legs and set him there. Extra help could assist you, but it’s putting him through unnecessary effort.”

At my dazed silence, she says, “You’ve read the hospice pamphlet for end-of-life signs and behaviors, I assume?”

I think, but we’re not there yet. “I have it on his bedside table. I’ve read it many times but I’m not seeing the signs it says to look for.”

David takes my hand. With sympathy in his eyes, he tells me, “I have.”

“Like what?” My voice is a whisper.

“The physical changes, mostly. Plus, he hasn’t been speaking much, barely at all. And he rarely responds to my questions. Or Marcy’s. Or yours.”

“But he’s just tired.” I hear the pleading in my voice.

“Yes, he is. He’s tired, Rachel.” Marilyn’s words carry so much meaning, and so much weight.

“And you know he’s not eating or drinking as much.” David’s eyes are willing me to acknowledge what these changes mean.

While I’ve been denying, David has been noticing. I’m sure he’s relieved there’s an objective professional in our midst.

I repeat something I heard in a Remembrance Care support group meeting. “You start out in denial and work your way down to acceptance.”

I look at my hand in David’s, and have another thought. “His hands are always so cold now, too.” As a person gets closer to death, his blood pressure lowers and there’s decreased blood flow to the feet and hands.

“Your father’s blood pressure today was eighty-nine over forty-eight. It’s time to call in hospice, Rachel,” Marilyn’s voice is filled with compassion. “You’re going to need their help now. They can make him more comfortable, which is the most important thing.”

I want to tell her we keep him comfortable, but I know she’s talking about comfort medications like morphine. I know because I had to give it to Mother during her last week.

And here I am again. I’ve worked my way down to acceptance.

Tears stream down my face. When David takes me in his arms, I sob into his shoulder.

As Marilyn hands me a tissue, I tell her, “Thank you. I’ll call and get the order from his doctor today.”

She looks relieved. “He can fax it directly to Buncombe County Hospice, and I’ll follow up with them. They’re very responsive and have a great team of nurses and caregivers.” She pauses before she adds, “And chaplains.”

“All will be welcome,” I tell her. “But I’d still like a recommendation from Remembrance Care for a private, top-notch caregiver. Even a nurse. Hospice only comes in two or three times a week, and I want someone here full time. A live-in, so that Dad has the best care until the very last moment of his life.”

“I understand, and agree you could use more help. But, Rachel, your presence is what he will need most.” She looks at David, “And you need to be there for your wife.”

Before David can say anything, I tell her, “He is. He will be. He’s always been there for me, and for Dad.”

She nods her head. “You’re lucky, both of you. I can tell you’re a strong team and that you’ve given Joe amazing care. But I have to ask you if you would consider moving Joe to a hospice facility? They’re excellent in handling his needs at this stage, and you can be with him the entire time, if you wish.”

Both David and I say at the same time, “Absolutely not.” We squeeze each other’s hand in unity.

Marilyn respects our decision. “Okay, then. I think a good CNA is your best bet, instead of a nurse. You’re sure you want a live-in?”

I nod emphatically, and she says, “I’ll make arrangements to get someone over here by late this afternoon, then.”

And this is why I need Remembrance Care’s help. They have resources and referrals at their fingertips. I wouldn’t have known where to start, other than calling health care agencies. I’m confident whoever Marilyn finds will be the right person—for all of us.