Three weeks ago, I made a phone call. Just a simple call.
My stepfather had just returned home from the hospital again — I’ve lost track of how many times he’s been in and out in the past year or so — and this time he was prescribed 2L of oxygen to be worn 24 hours a day. He has COPD, among other health issues, and he’s been on a slow decline for a few years. When he came home with the portable oxygen tank, the nurse from the home health agency who had been doing weekly visits on my parents for the past many months, just happened to be at the house accompanied by her clinical director who planned to evaluate the need for more services. She saw my stepfather enter the house, assisted by my brother, and rewrote the script in her head.
She’d been planning to offer palliative care services to support him through this ongoing and prolonged illness, but when she saw how difficult it was for him to just enter the house, she suggested to my mother that perhaps it would be wise to enlist the help of Hospice. “It’s different now,” she said. “Hospice isn’t just for end of life; it can provide prolonged in-home care so that your husband doesn’t have to travel to the doctor or hospital any more. We can manage his care right here.”
My mom called me, told me what was going on, and I asked, “what do you think?” She admitted she could no longer do it alone, which my siblings and I had been suggesting for months. “Well,” I said, “it might be nice to have someone coming to the house regularly that can help us make decisions when it’s time to make other changes. Would you like me to call them?”
“I think so. She said so much. Maybe you can hear the details yourself.”
So, I made the call.
Hospice would be covered 100% by medicare. They would adjust their visits as needed. They would handle all medications and would assist us in the transition if the time came for my stepfather to move to a facility.
I called my brother, who has been the point man through our whole journey, and he agreed that I should set up an appointment.
Hospice came to the house the next day. We signed my stepfather up, and the visits began — a nurse, an aide, a social worker. The door on the house was continually opening, and my mother was overwhelmed.
The following Monday, I sat down at my desk to complete some tasks for work and texted my siblings. “Hey guys, hospice is up and running. I won’t be able to come this week or next to help out, but I will be available by phone.”
I opened some documents, started working, and then spoke to my husband, “I think I’ve gotta go up there.” No one had called. Nothing had changed, I just felt myself pulled to my suitcase and mentally moving toward my vehicle. I called my mom, “How about I bring you guys dinner and stay til tomorrow afternoon? I can just provide you with a little support.”
“I hate to have you drive all the way up here, but that would be great.”
By early afternoon I was on my way.
I brought dinner. We ate. I got them both their meds, did the dishes, and made sure they were all set for the night before heading to the guest room.
Around 4am I heard yelling. I ran to my stepfather. He’d had trouble standing to go to the bathroom and was having some respiratory distress. I administered his new emergency med regimen, then helped him stand. He stood right there by his chair for several minutes so he could catch his breath, and then slowly, so slowly, used his walker to get to the bathroom. It took us 20 minutes to travel 20 feet. Once there, he was unsteady — teetering. I had to use my body weight to brace him so he wouldn’t topple into the bathtub. He did what he came to do, then we stood there for a moment, so he could steady his breathing before the trip back to his recliner.
It had been an emotional event for both of us, and neither of us got any more sleep.
The hospice nurse came that morning. My brother, mother, stepfather, and I spoke with her about what options we had. If I hadn’t been there for the incident the night before, what would our 100 pound mother have done? The nurse suggested she send over the social worker that afternoon to walk us through some options. Also, since my stepfather was having difficulty standing up from his chair, she recommended we purchase a lift chair.
That afternoon, the social worker came and talked my brother, my mother, my stepfather, and I through our options. We could keep him at home and hire additional home health aides (we were already paying for eight hours of assistance a week), or we could move him to adult foster care, a nursing home, or an assisted living facility. But before we made any decisions, we needed, she said, to meet with a lawyer who specializes in elder law. Any of these options would be quite expensive and we should have guidance on how to protect our parents’ assets before we acted.
We had a plan of action, so my brother ran a mile down the road to our small hometown’s furniture store to purchase a lift chair. While he and my other brother arranged to bring it home, I ran to the pharmacy to pick up some prescriptions. We met back at the house, brought in the chair, and while all of us were rearranging furniture and tidying up the space, my stepfather attempted to move from his walker to sit into his new chair. Up until recently he had been independently getting in and out of his chair without difficulty, so none of us thought to stand near him, and down he went. We all rushed to see that he was ok, my brothers lifted him back to his feet and got him in the chair, and we all looked our new reality right in the face.
That reality would start changing day by day.
The next morning, the hospice nurse stopped by the house to assess any damage from my stepfather’s fall. We’d been up again in the night — for breathing issues, for trips to the the bathroom, for confusion. She examined him, found the cut on his arm from where he’d hit the coffee table and a large bruise on his backside from the point of impact. She assessed his breathing and other vitals then met my mother, sister-in-law and I in the kitchen.
She used words we hadn’t heard before rapid decline…24-hour assistance… and about one month. We tried to comprehend this adjustment to our new reality.
And the scramble began — some siblings investigating elder lawyers, the social worker and I investigating facilities. Phone call after phone call, text message after text message. Eventually a couple tours. Finally an open bed. Then digesting the cost, then agreeing to the terms. All the while, on-going conversations with my mother and stepfather about what is happening and why…over and over and over.
Four days after I had decided that I was too busy to go up to my parents and then pivoted on that decision and went anyway, we were loading my stepfather, his clothes, his walker, and his newly acquired lift chair into our vehicles and transporting him to his new residence.
He didn’t love it, but we couldn’t see another way.
That was two weeks ago.
Hospice has continued to use incomprehensible words…rapid decline, days, family should come.
Family has come. Someone is beside him now.
It won’t be long.
That’s a reality.
From his fullness, we have all received grace upon grace. John 1:16
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