Chapter 18: The Easy Transition That Wasn’t

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

Losing the Caregiver Group

We caregivers all seemed to have the same idea: once your loved one was placed in a dementia care facility, your life would become easy. That wasn’t the case for me. For me, I lost the emotional support of the caregiver group and had to fight a battle on Steve’s behalf that I never anticipated. I found myself in the “wilderness”.

Steve was already in the middle stages of the disease when the caregiver group started. Therefore, I was further along in my caregiving journey than the other caregivers. I felt alone and isolated when I told a story about something terrible that had happened because of Steve’s dementia. The room was dead quiet as grim faces stared in my direction. On reflection, I’m sure I wore the same grim face -- we were probably mirroring each other. Eventually, I came to recognize that grim expression as “the Caregiver Look on a Bad Day”.

It’s a look of being at the absolute end of your rope; fully exposed and hugely vulnerable with no place to hide. There’s an intense pain that no makeup or dark glasses can conceal. There’s a distant or vacant look in the eyes. Just visualizing it makes my stomach clench. In fact, as I wrote this paragraph, I felt the Caregiver Look on a Bad Day in my own body even though Steve has been gone for ten years.

Which is why it was so astonishing that I was becoming stronger as Steve’s journey through dementia progressed. At every caregiver meeting, I would end up by saying the same thing: my relationships were deeper and more meaningful. I had a sense of purpose I didn’t have before. I had grown as a human being. I was proud of the loving, compassionate, and open person I was becoming.

And strangely, I could see that Steve was finding his way too. He fit in with the residents and staff at Dane Meadows.

“Everyone here is crazy, and so am I,” he once told me.

“This is my family,” he said.

One woman, who had a giant poster of Elvis on her door had a big crush on Steve, and the staff often had to redirect her. I didn’t feel angry or jealous as I might have before. I knew we were going in different directions, and I think Steve did too.

Once Steve moved to Dane Meadows, I was no longer a full-time caregiver, and my caregiving role had shifted dramatically. There were still huge issues I had to deal with, and I spent every day at Dane Meadows the first year Steve was there. But other caregivers viewed me as being freed up in a way they were not. I didn’t fit in with the group anymore.

When I talked with Pat Wilson about it, she said that ADAW focused on the early to mid-stages of the disease, and did not have any programming for caregivers of people in the later stages, such as me. We had long conversations about Steve’s and my transition to the next phase. We talked about writing a book together and developing a new model for long-term care that wasn’t as expensive as community based residential facilities and nursing homes. Having been in the affordable housing field, I didn’t see how low- or middle-income families could afford this kind of care without the COP and Medicaid programs. Even ten years later, many if not most families without COP or Medicaid still can’t afford this kind of care.

Pat Wilson said I was now in the “wilderness”. Alone, I grieved the loss of Steve in our home, as well as the loss of our relationship and of our marriage. I grieved the loss of the life I had known for nearly 40 years, and the loss of the future that I thought would be.

The biggest problem may have been that I was entirely unprepared for the wilderness phase. We never talked about it in the support group. It hit me like a ton of bricks. I was also informed that the ADAW meetings were not meant for me any longer. While I could see the reasoning intellectually, it reinforced the sense of being alone again.

*****

Meanwhile Jody, Steve’s nurse at St. Mary’s, counseled me that now was time for me to take care of myself. She suggested that I tell Steve that I had to go out of town for a few days. But I shouldn’t go out of town. I should stay home and see how he does. If things go very wrong, I could monitor it from close range.

I had a hard time wrapping my head around that idea. First, I did not want to lie to Steve. Second, I couldn’t leave Steve behind. In that moment, I understood it completely. That was the kernel of truth I was missing. How could I move on with my life when Steve lived at a facility? How could I live a life for me that’s meaningful and fulfilling for myself while Steve is still living? It was survival guilt.

As the disease process evolved, I was surprised with how much more Steve communicated his love for me. He told me more than once that he loved me and was in love with me, which is something I hadn’t heard from him in a long time. Steve was devolving, becoming diminished, even adolescent. My heart broke every time I saw him close to tears in frustration and fear over what I perceived as some small matter or another. But I had changed against my will. My concern for him came from a parental place, not as a wife or life partner.

Before he fell asleep one afternoon, I watched his forehead crinkle up as if he were looking very hard to see something.

“Are you interested in the parade in Gerbilville?” he asked.

I think he invented the name “Gerbilville” because he couldn’t articulate the name he was really trying to say.

In the Gerbilville parade, they had just all gone by and they had accomplished something.

“I found the body,” he said.

“Whose body was it?” I asked.

“I don’t know.”

“Please describe what you’re seeing,” I asked him, “because I can’t see the parade.”

He reacted with an “aha” moment on his face.

A Major Crisis

The house was quiet, and I was at the computer writing a $30 million grant application for a client when the phone rang.

“Amy Kell.”

“Hello Amy, this is Ms. Franklin at Dane Meadows calling about Steve.”

Oh, no. Please, no, I thought.

“This morning, Steve took the fire extinguisher out of the box on the wall when the staff wasn’t looking. He was terrified that the room was on fire, and he hosed down the wall with the fire extinguisher, top to bottom, side to side. He wouldn’t let go of the extinguisher, and he threatened staff by aiming it at them. Eddy was called in and wrestled the extinguisher away from Steve and calmed him down. Steve was given a sedative and is back in his room asleep. We may have to move him over to Monona Mental Health, to taper him off his anti-psychotics, and we may not be able to bring him back here afterwards.”

My heart stopped beating. No, not Monona. Rumor was, it was a snake pit. I can’t have Steve go to Monona. I stopped hearing the voice on the other end of the phone. I knew she was saying something about getting Steve off his anti-psychotics and I agreed they can do it there, as opposed to sending him to Monona. Meanwhile, my mind drifted to a cobweb in the corner of the stairwell that I don’t remember seeing before.

We hung up. I headed over to Dane Meadows, slightly ashamed and totally scared. I realized I must spend every day at Dane Meadows from now on. As the next few days went by, Steve became listless, then he started crying and he didn’t stop. Something was very wrong. I asked to see the psychiatrist.

She showed up and said that they took Steve off all his anti-psychotics cold turkey.

“What???”

“You took him off all his meds cold turkey? You didn’t taper them? Look what you’ve done to him! I didn’t authorize you to do that!”

“Oh, but you did”, she said, her voice condescending.

“We told you we were going to do this.”

“Oh, no you didn’t. You did not say cold turkey. What you have done is cruel, and he has no concept of what is happening to him. This is unacceptable.”

“Of course, you have the right to file a complaint with the State of Wisconsin” she said imperiously. “Patients have that right and as his personal representative, you can file a complaint.”

“Right now, all I care about is that Steve stabilizes.”

And I spent the next days with him, morning until evening, making sure that he was okay and that the psychiatrist and psychiatric social worker were not interfering in any way.

Steve stabilized and I emailed our attorney to explain the situation. I asked her what I should do. Barb said:

“File a complaint,” Barb said.

Which I did. The day the state investigator arrived at Dane Meadows, they had Steve cleaned up and dressed up in one of his button-down shirts and a nice pair of pants. His clothes were too big on him now that he had lost 45 pounds.

The investigator talked with Steve and talked with me, and I never heard anything about it again, which Barb said would probably happen.

But the gauntlet was lowered, and they either ignored me or treated me with kid gloves from then on. I vowed never to turn my eyes away from Dane Meadows, no matter what. And I never did.

The Way Out is the Way Through

Things settled down a couple of weeks later, and I met the Hospice Chaplain at a local Panera Bread restaurant for more than an hour. It was a soul talk or a spiritual talk about death and dying. He was religious, perhaps a priest, with a very different perspective from my Unitarian Universalist roots.

There was some preachiness in his manner, which he owned up to, but he had a lot of meaningful things to suggest. He suggested that I turn over my burden to my higher power and/or God. Tell my higher power or God that I can’t do it myself anymore and ask for help. Consider the mysteries of life. Realize that this experience of suffering could be a magnificent teacher. Realize that suffering is breaking me into two and is opening me up to be a more loving, compassionate and caring person. Though his religious lens differed from mine, his words affirmed what I was already living. Suffering had changed me – not into someone broken, but someone broken open.

*****

I talked with one of the ministers of my church about creating a caregiving group for church members and others that embraced spiritual growth and development. I worked with a gifted ministerial assistant to develop a community caregiving group which she facilitated until I felt ready to do so. I led that group through Steve’s dying process and eventual death and for two years afterwards before I stepped away. Another church member with professional experience in social work and group facilitation stepped in. Ten years after Steve’s death, that group is still flourishing.

*****

In the end, the wilderness was a wise teacher.

Once I stopped trying to escape, I saw connections all around me. I was no longer just surviving I was beginning to thrive.

Pema Chodron describes the process the best:

“Sticking with that uncertainty, getting the knack of relaxing in the midst of chaos, learning not to panic – this is the spiritual path.”