Chapter 17: Getting Out of Dodge
From: A Heart Wide Open: Living Through Dementia Caregiving and Loss
Note: The names of the two communities described in this chapter have been changed
Moving Steve into Valley View Assisted Living
Finding a good place for Steve that took Community Options Program (COP) funding and was close to home was difficult. But our social worker Tammy prevailed. The advantage of Valley View was that a room was available, and they would accept COP funding. The disadvantage of Valley View was that it wasn’t meant to house people with dementia. The manager explained, “We don’t lock our doors here. Residents have the freedom to come and go.” Also, the staff at Valley View was not trained to handle challenging behavioral cases. But the manager said she thought they could care for Steve and so did the social worker, so we gave it a go.
Steve’s room was small, but pleasant. It had a private bathroom -- a big plus -- and it came with a hospital bed. I cleaned up some old wood chairs from the basement that I knew Steve liked. I bought him a small TV from Costco and a table lamp, which I still have and found some other furnishings I thought would be comforting. I set him up with the Dish Network so he could watch all the TV shows and sporting events he wanted. I found a frame at Pottery Barn with cut-outs for many pictures of different sizes. I put in the image of him as a little boy on a horse, and Steve as a little boy wearing a tie with an “S” on it. I found pictures of all the cats and the dogs and dropped them into the frame too. I brought a pair of my slippers from home and put them in Steve’s closet so Steve would think I lived there with him.
Steve and I met frequently with the social worker and the property manager to create a care plan for him. It was then and there that I made up a rule I abided by until the day Steve died. It was this:
I would never be involved in any professional conversation about Steve without Steve being there in the room with me at the time.
Back in the day, this was not generally done, but it became my policy anyway. It ensured that Steve heard everything the staff and I said about him, even though he couldn’t absorb it all anymore. At the end of each meeting, I always turned to Steve and asked him if he agreed with the plan. In front of everyone, he thought about it, said “yes” and smiled.
On move-in day, Steve and I had our first dinner in the dining room at Valley View. We sat at a little round table and glanced around the room. It was a comfortable space where everyone was welcoming. Male and female residents sat at the tables, but they were all older than Steve, by a lot. They were in various states of mobility and awareness. I could feel that it made him uneasy – like he wasn’t in a group of his peers. By that time, Steve didn’t talk as much as he used to, so I had to look at his facial expressions and his posture and imagine what he was thinking. In that moment, I imagined he was thinking “why the hell am I hanging around all these old people?” I was a little uneasy too. I tried to imagine how Steve might interact with the other residents, but I kept my thoughts to myself.
After dinner, Steve and I went back to his room and watched some television on the Dish Network while snuggling up together in the hospital bed. Afterwards, I got Steve ready for bed and tucked him in. He looked content so I bundled up for a Wisconsin winter’s night and left for home.
I said my goodbyes and walked out his door and down the hallway. Just then, my conscience admonished me big time:
“YOU LEFT STEVE BEHIND!”
Yes. I had. The guilt and the agony nearly killed me. I got into the car and turned on the heat full blast. I headed back home on County Road M, which had so little housing and commercial development, it seemed almost rural. I forgot the exact spot on the 20-minute trip where I started sobbing. Or maybe that spot changed from night to night, week to week. There was little nighttime traffic, so I wasn’t worried about crashing into anyone. I drove slowly to avoid hitting an ice patch and skidding off the road into the ditch. Then the rumination began.
How was it okay to leave Steve there? I knew Steve would end up in a facility at some point, but why had I been so clinical about it? Had I been fooling myself that I truly understood what this would feel like for me? Though I knew he needed more care than I could provide, I didn’t feel relieved. I felt inadequate. Like he needed a symphony orchestra and all I could play was the triangle.
Night after night on these drives home from Valley View, I started sobbing and my heart crumbled into coarse wet sand, and I could barely hold on. At about the halfway point, I emerged into civilization, i.e., stoplights and residences, and had a grip on myself again. I wouldn’t be embarrassed if anybody glanced into my car windows because I looked normal.
Teddy, Lani, and Jenny jumped for joy when I got home, and we curled up together and tried to make sense of our lives going forward. At least that’s how I viewed it. Can’t say what the dogs were thinking except they were glad we were together. It helped me to think the four of us were in a loving pack.
The first morning after the first night, I got a call from Valley View:
“Steve woke up disoriented in the middle of the night. He came out into the hallway and fell on his butt in shock. We got him back into bed and he went back to sleep.”
God, how I wished I’d been there to ease his mind.
I went to Valley View every day Steve lived there, but there wasn’t a whole lot to do. I’d arrive, ditch my boots, and get into my slippers and we’d curl up in the hospital bed and watch some television. Afterwards, Steve would get into his wheelchair, and I’d push him up and down the two long corridors, trying to figure out where things were. One of the problems was that it was hard to remember which corridor you were in. The wallpaper looked the same in both corridors although the wallpaper border looked a little different in each. I pointed that out to Steve, but he couldn’t discern the difference. Everything looked the same from his perspective. “I wonder if a lot of residents got lost here?” I asked Steve.
Because there weren’t many activities at Valley View, I kept Steve in St. Mary’s three days a week. He also received visits from a Hospice volunteer -- a willowy middle-aged woman who wore stiletto heels and drove a giant SUV. I tried to let go and let others do their thing, but I was beside myself with grief over the half-life that had become Steve’s existence. I could not stand to watch Steve be so scared and confused and not be able to step in and fix everything. Not that I ever could fix everything in the past. But it killed me to watch Steve suffer; it was unbearable to witness.
I could not understand why Steve needed to endure something so cruel. I am not a religious person, but I asked God before I went to sleep one night why we were having to suffer through this. The answer I got the next morning was that it was purifying. That idea was hard to grasp, although I did feel that we were undergoing a seismic shift. We were changing profoundly in ways I couldn’t comprehend at the time.
Part of me thought I should spend more time at Valley View, but I was so overloaded I couldn’t do it. Two to three hours a day seemed to be all I could manage, plus running my business, and taking care of three dogs and the house. I needed to let the staff work with him. And that’s what they were gently advising.
As I watched Steve decline, I became uneasy about the placement. Maybe Valley View was inappropriate for Steve because his needs were becoming greater than they could handle. Jody, Steve’s nurse at St. Mary’s, told me that he couldn’t self-direct anymore and that in her opinion, Steve should be in Dane Meadows, which was a county-run facility that could accommodate people with behavioral issues. It was more of a nursing home than an assisted living facility.
When I reported that information to Tammy, she freaked out because Steve would lose the COP program funding. However, Steve would be in Medicaid, which was fine in my view. His care would be covered either way and through the Medicaid program, Steve might get the care he really needed at a facility meant for dementia patients.
In the past, when Steve and I had been in a difficult place like this, one of our tricks was to say: “screw it”, let’s take a day trip or plan a vacation or get out of a dodge for a while. It used to work. Like the time we decided to go to the Caribbean for no good reason other than to ditch our work lives for a week. It was a blast even though the airline carrier went into receivership the day we were to fly home. But now, we were nailed to the spot by advancing dementia and death. There was no getting away from this.
Meanwhile, my work needed attention because I had big projects with looming deadlines. I got back to work and let the professionals do their job. That worked for about a week and a half.
January 15, 2013
I was working away at my desk. The caller ID did not have the name of a client in it. I answered anyway.
“Amy Kell”. I said.
“Amy?” the woman responded.
“Yes, this is she.”
“This is Valley View Assisted Living calling to inform you that your husband Steve has eloped.”
Eloped? Really. With whom? I wondered. Did Steve get out of dodge with someone else?
The manager went on to explain that: “as you know, we don’t keep our doors locked during the day. Well, Steve managed to wheel himself outside when no one was looking.”
Ah, okay, I thought. New word of the day. Elopement means escape. But oh my God.
“Where is he now?” I asked quickly, trying not to sound panicked.
“He’s back”, she said. “Most of the staff had been outside looking for him”.
It was ten degrees at the time and when Steve eloped, he was wearing only a t-shirt and gym pants. “But he’s warming up now,” she assured me.
“Shit”, I thought to myself. How incompetent can these people be?
“Could I talk with him please?” She put him on the line. Long pause.
“Where are you?” Steve said in an agitated tone.
“Hi Sweetie. I hear you managed to get out of the building.”
Another long pause….
“When are you coming?”
“I’ll be there right away”. I threw on a coat and sped over there. Good thing there aren’t too many cops on County Road M after dark.
February 15, 2013
“Amy Kell.”
“Amy?” the woman says.
“Yes, this is she,” as I put down my work and dropped my head into my fist, bracing myself.
“This is Valley View Assisted Living calling to say that Steve has had another elopement. This time he stayed in his wheelchair. He rolled off the sidewalk onto the lawn and got stuck in the mud. A couple from a nearby building found him and brought him back”.
By this time, I knew why Steve was eloping. He had been telling me that resident bed alarms and door alarms went off regularly, day and night. The staff don’t always turn them off right away and after a while they scare Steve or make him angry.
The staff told me that more than once, Steve had wheeled himself into other people’s rooms and unplugged their bed alarms.
Steve had also called me repeatedly to say that the building was being torn down, or the floors were being ripped up and that I wouldn’t be able to find him. The day before his second elopement, he told me that he was living in a “house of mirrors”. One day Steve barricaded himself into his room with his wheelchair and wouldn’t let anyone in.
“I’m leaving for Valley View now”, I told him as I sighed into the receiver.
“I’ll be there in 20 minutes.”
March 15, 2013
“Amy Kell.”
“Amy, this is Jody, Steve’s nurse at St. Mary’s Adult Day Center.”
“Oh, Jody, it’s so good to hear from you. How are you doing? How is Steve?” I exhaled and relaxed in my desk chair. A pleasant conversation for a change, I hoped, even though she rarely called.
“After a long deliberation, Jim (the program director) and I have agreed that St. Mary’s Adult Day Care is no longer appropriate for Steve, and from what we have heard, we don’t believe that Valley View is appropriate for him anymore either. Steve needs 24/7 care now; neither we nor Valley View can accommodate that. You are going to need to move him”.
“Move him? Where? What am I going to do?”
Jody has made this kind of call to many families in the past, so she is well-practiced. This was my first such call, so I had no practice.
“I recommend that you call Dane Meadows, the county nursing home that specializes in behavioral cases such as Steve’s. They are always full up, but I know the admissions director and if you describe how no one else but them is equipped to handle Steve, they will be receptive.”
We say our goodbyes. I hung up the phone. I put down my work and drew all the courage I could muster and called Dane Meadows. “I need to make an appointment with Ms. Franklin, please”, I say to the receptionist, “and it’s urgent”.
March 20, 2013
One expressway led to a second one and then to an exit and a quick right turn, and there it was. Dane Meadows was a midwestern prairie style one-floor building off to the right. It was new and when I walked inside, it smelled clean. There were plants and benches, and little alcoves where you could sit and reflect. It seemed lovely. I got a quick tour of the facility from someone in the office. The business part of the operation was up front, and the resident’s rooms were clustered together in pods at the end of long hallways.
Each pod was designated for a certain population. Steve’s pod would be the dementia unit where there were 16 beds and a central common area. Each room had its own toilet and sink and came fully furnished including a TV, dresser and wardrobe. There were big windows facing the prairie and the views were peaceful. It seemed like a miracle. Or maybe more like a mirage.
Oh god, please let them take Steve, I thought to myself as I was escorted back into the waiting area. Just then Ms. Franklin, the admissions coordinator walked over and welcomed me.
“Amy, it’s nice to meet you. Please come into my office.”
She seemed nice enough. I tried not to act too eager. Relax, I told myself. Patience. No crying. I sat down in a metal office chair in front of her desk in yet another windowless room and sent out a prayer of desperation in case anyone who could do something about it might be listening.
“Please tell me why you think Dane Meadows is a good fit for Steve”, Ms. Franklin asked as she folded her arms and leveled her eyes at me. She had a strange resemblance to my high school guidance counselor. I took a deep breath. And it all poured out. A recitation that had become so close to my heart that I could deliver it in all circumstances to anyone who wanted to hear it; the days of personal privacy long gone. As I described our story, her face softened, and she said:
“Yes, Dane Meadows is a perfect place for Steve, and as luck would have it, we have an opening in the dementia unit”, she said.
Just like that, our next chapter began.