Chapter 6 A Heart-Wrenching Decision
Your memory fails. I must remember for you. So, mine gets better.
When Lena and I arrived in Houston, we moved into our one-bedroom apartment in a 55-and-over community somewhere in the city’s northwest suburbs. My sister had picked it out for me. It was an inspired choice I would never have been able to make from California. Everything I needed was five minutes away. Brenda’s place was just ten minutes down the road. Lena had no idea where we had stopped driving. I told her the apartment was a condominium I had purchased so we could enjoy a few months a year close to relatives. To my surprise, she bought into that therapeutic fib.
I was getting good at making up stories. That was another surprise. I had been trained to be deceptive… but not with my wife. We were now in Texas, not in California or Germany. Lena, thankfully, did not know that. As we walked the dog through the parking lot, she noticed something different than Carmel, where wealthy families from most states and some foreign countries keep second homes.
“Why does everyone here have a Texas license plate?” Lena asked me this in what sounded like a moment of clarity.
Her observation was on the mark. We had stopped driving in one of the most diverse areas of the United States. Unlike Carmel, an area full of ordinary people. A reflection of America itself. Houston has diversity in everything… except license plates. I didn’t want to tell her we would never go back to California or Germany. I never had to. Even though our preferred places of residence are some of the least diverse in the world, our globetrotting lives had prepared us well for Houston. Nevertheless, she would have been disappointed with the truth.
“I don’t know, honey,” was all I could manage to say. I handed her the leash. “Here… you take the dog.” Lena’s attention was now fixed on Maritza. She had no follow-up questions as we exited the parking lot. I did not realize it then, but this was my first successful experiment with what professional caregivers call “diversion.” I would have to get good at that too.
***
Lena liked the ‘condo,’ rented furniture and all. As had been my hope, the place reminded her of our vacation apartment in Germany. We established a routine that included walking the dog every few hours. Like cooking and watching television, this was a shared activity we thoroughly enjoyed. The remainder of each day found me trying to persuade Lena to take her medication (any medication) or clean herself. On most days, I was not successful. I still did not understand why my beautiful and brilliant wife of 42 years would not perform these simple tasks. We argued about it twice a day. There was no physical violence, but I thought I could bully her with my voice into doing what she needed to do. I explained to her (as if she understood) what would happen if she continued to refuse my help.
“If you don’t take care of yourself… or let me take care of you… we’ll need to bring in professional caregivers to do it for you!”
That did not help at all.
Lena would look at me and say, “I can take care of myself… especially since there is nothing wrong with me!”
She had not taken a shower in a long time, and I was sure that her blood pressure was through the roof. Clueless, I continued to hope she would come around. I had not yet learned enough about dementia to lower my expectations.
Lena had a lifelong love for ballet. Houston has a world-class ballet theater. After a few weeks in our new abode, I decided to take Lena to see Romeo and Juliet, one of her favorites. I got the tickets (less expensive than San Francisco’s ballet) and told her the exciting news. She did not seem to understand what I was telling her. I pushed on anyway. On the morning of the ballet, I tried to get Lena into the shower. She would still not do it. I then tried to get her into a designer dress she had always loved wearing. She would not wear it. I managed to get her into the car and drive downtown. I was dressed in a coat a tie; Lena wore blue jeans and a yellow sweatshirt. Actually, two sweatshirts over a long-sleeve undershirt. She had been ‘layering’ her clothing, another sign I was surprised to see. This would continue, even when the temperature rose into the 90s.
As we entered the building, a throng of well-dressed people were waiting for the performance. Then I lost her in the crowd! I let Lena use the Ladies room while I was in the Men’s room right across the narrow hallway. I have always taken less time than she to do my business, so I waited for her by the Ladies Room door. When she did not appear, I called her name into the bathroom. Nothing came back. I asked a woman coming out if she had seen anyone inside wearing a yellow sweatshirt.
“Yes… she left a few minutes ago,” said the woman. “I saw her come in, then immediately leave without using the facility. I thought that was a bit odd.”
Oh my God! I ran into the crowd on the second-level lobby.
No Lena! Panicked, I ran around for a few minutes, trying to spot her. Nothing! I stopped to ask a uniformed theater employee if she had seen a woman in a yellow sweatshirt, wandering around.
She did not understand English very well; I spoke bad Spanish.
“¡Estoy buscando a mi esposa… ella es rubia, con camisa amarilla!”
She pointed. “Si… acá.”
I ran in that direction and found my wife… literally wandering around.
I hugged her. “Lena… we need to go in the theater and find our seats.”
“Okay,” she nodded.
Lena had always been nervous in large crowds. She was calm. Did she panic over being separated from me? She did not. Lena was seemingly unaware of my emotions on finding her. She was confused but not anxious. It was the first time she had “wandered” into danger and a prelude of things to come.
Having dealt with that crisis, we found our seats and witnessed a powerful performance that seemed to connect with Lena’s shrinking brain. At one point, she turned to me and said, “I should have worn something nicer.” After the ballet was over, she thanked me. I held her hand all the way to the car, and we drove home. Back to our new routine.
The next day, Lena had no idea we had gone to the ballet.
Greater Houston has a plethora of nice public parks. This is a partial antidote to the proliferation of concrete highways and strip malls (a condition Lena had always called Amerikanaschreck, my favorite made-up German word). Brenda showed us the parks nearest the apartment, and we developed a routine of walking the dog in a variety of mostly green spaces with lots of other people getting away from all the concrete. Lena loved these walks. Ritzy would chase squirrels but never catch them. There were dog parks where pets could run off-leash. Strangers would greet us with phrases like “How are you?” In Houston, when they ask how you are, they really mean it. Fresh air and interesting birds made such outings the most pleasant part of the day. After our walks, we would go back to the apartment and sit on the porch. Then I would fix lunch or cook dinner. Sometimes Lena would help me; sometimes not. After dinner, we would watch re-runs of old comedy shows… and laugh. I was enjoying this routine, deluding myself into believing it would last a long time.
The clock was ticking, however, on Lena’s intermittent medication and personal hygiene.
***
I had intended to take care of Lena in the apartment for at least one year. But, little by little, it had become clear that she would have to be placed in memory care sooner rather than later. Naturally, I wanted to delay that decision as long as possible. I had hoped she would be more compliant with medications and personal hygiene once we settled into our new place. Although Lena seemed happy, she did not become more compliant. It had been a full two months since she’d taken a shower. I had been unsuccessful in administrating a steady stream of medications before the move; I was unsuccessful after the move. My sister and I called in home health care to see if they could do a better job. They did… four hours every weekday for about three weeks. Suddenly, I had time to myself again. Lena was taking medication and even got in the shower. I thought this arrangement would let us live together for a while longer. Maybe a lot longer.
When Lena began refusing trained caregivers, Brenda and I started looking at memory care facilities.
The Writing on the Wall
What I learned later, through listening and reading, was that Lena had been at Stage 4 for dementia (on a scale of 1-7) for most of the pandemic. (Because she refused to see the neuropsychologist for testing, Lena has never been formally diagnosed with Alzheimer’s.) At Stage 4, moderate dementia, a patient’s short-term memory declines noticeably. Lena’s inability to pay our bills (or even open them) was another sign of Stage 4. In retrospect, I believe she was in Stage 5 by the time we got in the car to drive to Houston. At Stage 5 the patient needs help with almost all daily activities but still recognizes family members. After we moved into the apartment, Lena rapidly descended into Stage 6, the “cliff” my VA counselor had warned me about. She required constant supervision and failed to recognize anyone other than me and my sister. She began to wander around the parking lot behind the apartment while I was in the gym right across the hall. On some days she would visit me in the gym every five minutes. A few times, I lost track of Lena and ran around the compound, looking for her. My new neighbors were almost as uncomfortable with this as I was.
My reading later revealed another analytical tool I now find useful in tracing the development of Alzheimer’s… in Lena’s case or any other: “The A’s of Alzheimer’s.” Some doctors count eight of them. I will list those in order of appearance in Lena’s life. The explanations are mine.
1. Agitation. Lena became more argumentative long before I noticed any other signs of the disease. She was steadily getting more sensitive and prone to overreaction… to my statements and those of her friends. I often made things worse with my overreaction to hers.
2. Agnosia. Failure of the patient to understand what is happening. Perhaps Lena knew in the beginning what was going on in her brain. If so, she very quickly lost the awareness. To this day, she denies there is anything wrong with her, even though she is clearly in Stage 6 of the disease.
3. Apathy. The pandemic provided me with a ready-made explanation for Lena’s growing indifference to everything. I confronted her every few days about our missed opportunities for enjoyment, both indoors and out. Her apathy extended to contact with friends and relatives. We attended a concert given by the Vienna Boys Choir in Carmel. Lena wasn’t crazy about it.
4. Anxiety. Lena’s scary childhood was all the rationale I needed to explain her constant worry. I did not see that the anxiety trend line was ticking upward, ever so slowly. High anxiety (for both of us) was fueling a sharp decline in our happiness prior to memory care.
5. Apraxia. This is a loss of fine motor skills. Lena had always been better than I was at fixing things around the house. She was also good at making things. She turned her best photos into calendars every year. She turned heavy pine boards into room dividers, covered with embroidered fabric (one such screen now sits next to her bed in memory care). But even before leaving California, Lena could not operate the remote control for our TV set.
6. Anomia. A diminished capacity for remembering names. In 2021, Lena started to forget the names of relatives and friends we had not seen in a while (thanks again to the pandemic, even local friends). These were people with whom she had maintained frequent contact for decades. Three years later, she doesn’t use any names at all. Not even mine.
7. Amnesia. Lena’s short-term memory was essentially gone by the time we left California. As she descended into Stage 6, most of her long-term memories also left her. Old pictures and coffee table books seemed to help at first. After a few months, Lena couldn’t concentrate on pictures (or anything else) long enough to recall the past. Now she just flips rapidly through the pages.
8. Aphasia. The inability for Lena to express herself through speech began in California. Fast-forwarding to memory care, she can stay in a conversation… but her sentences often do not make sense. After we got to Houston, her English sentences became more like my German—short phrases, almost always in response to simple questions. Now she often makes no sense at all. Notably, her German is still perfect.
Living with me in the Houston apartment, Lena’s behavior had become completely unpredictable. At this point, nobody was able to take care of her. Home health care helpers were still trying their best but, like me, they were about to give up. Lena’s blood pressure spiked, and she became very dehydrated. Fearing she would die suddenly (of stroke or heart attack), I asked my sister to call 911 and waited for an ambulance to take her to one of the several local hospitals. I had consulted one of the memory care facilities nearby and learned that this hospital had a program focused on dementia patients. Lena would need intravenous hydration, and a care routine would have to be established. Her medication regimen would be restored and balanced. From there, I was told, she could be checked into memory care. That advice turned out to be wrong. I would find out later that hospital care is not a prerequisite for memory care.
The 911 call was the biggest turning point in my life. Lena would never live with me again.
A Hospital Ordeal
Brenda and her daughter ordered me out of the apartment before the ambulance arrived (they knew something I did not). As soon as the ambulance pulled up outside the apartment, I drove to the hospital, hoping to get there before Lena arrived. It never occurred to me that my 80-year-old wife would give the EMTs a hard time. But she did. As my sister and niece reported to me later, Lena panicked. She thought she was being arrested by the Gestapo. She wrestled with her captors (and punched one of them) until they managed to sedate her with an injection administered through her blue jeans. Meanwhile, I was sitting in the parking lot outside the hospital emergency room, wondering what was taking the ambulance so long.
The ambulance arrived, and I followed the EMTs as they rolled my wife into the emergency room, where Lena was deposited in an alcove with a rollaway bed, an easy chair, and a television set. I watched in horror as a security officer frisked Lena for weapons (surprisingly, I was not frisked). She was still under sedation and could barely stand. The emergency room staff took Lena’s clothes and dressed her in a pair of pajamas made of paper. The air conditioner was cranked up, and the “room” was icy cold. Brenda and I quickly wrapped Lena in a blanket. There was a television set, tuned to something inane. We sat—freezing—and waited for a nurse to attend Lena.
We ended up waiting a long time. They kept Lena in the alcove—in the same paper pajamas—for four days. No medical care. No personal hygiene. Only a food tray at mealtime. Like a prison. Brenda and I spent every day by Lena’s side, watching the staff ignore her, along with a dozen other older patients. It was like a scene from a scary movie. The emergency room was disorganized and chaotic. There was no obvious person or place to find out what was going on. I began to ask questions… to anyone within earshot.
“When will you put my wife in a real hospital room?”
I asked multiple staff members, multiple times. The same answer kept coming back.
“We do not have any rooms available for mental health patients. We are waiting to transfer your wife to a behavioral hospital.”
“And just when will that be?”
“As soon as we can get a police escort to take her there.”
“What?”
The random staff member did not show me any empathy at all. “She is under a protective order, signed by a judge.”
“When did that happen?”
“Protective orders are routine for patients who come in with mental health issues.”
I started to lose my temper. “My wife has dementia, probably caused by Alzheimer’s!” I shouted. “She is not dangerous to anyone!”
“We can’t take any chances.”
“So, for whom is the order providing protection… you or the patient?”
No answer. Perhaps I had just asked the wrong person. I persisted.
“I have not seen the order… and who is this judge anyway?”
“You are not authorized to see it.”
Feeling like a volcano about to erupt, I responded, “But I am Lena Schiller’s medical power of attorney!”
“That’s not good enough… you would have to be her legal guardian.”
“I have a legal document, signed by my wife, designating me as her agent for medical decisions. The lawyer said nothing about guardianship.”
No response. The Emergency Room staff never even asked to see my documents. Indeed, they didn’t even bother to log me in… and there is still no record of Eric Schiller ever being there.
I continued to ask the same questions until the afternoon of Day Four. I got the same answers, from multiple Emergency Room staff members. In four days, I did not see a single doctor in the Emergency Room. My sister and I had to beg random nurses to give Lena shots of Ativan to keep her from running out of the facility. She sat there—in the same underwear and paper pajamas—for four full days. I brought in a sweater and helped her put it on.
“How did that get in here?” demanded a nurse’s assistant as she removed the sweater and thrust it into a bag.
Really?
I asked again about when they would transfer my wife to the other hospital. I was told the police escort had been delayed further… and that Lena could be kept in the emergency room for as long as three weeks!
My bias for action kicked in. I ran back to Lena’s bedside, gathered her in my arms, and carried her out of the hospital into the parking lot. I placed her gently in my car, got behind the wheel, and turned around to back out.
A police car blocked me from taking Lena home!
Is this really happening?
I got out of the car and proceeded to shout at everyone. Armed police were no exception. As I was arguing with staff members and police, other hospital staff put Lena in a wheelchair and rolled her back into the emergency room. After about ten minutes of shouting, I calmed down. There was nothing to be gained by arguing with the police. My dispute was with the emergency room staff. Some of them remained in the parking lot.
Lena was no longer there.
“Where’s my wife?” I asked, turning around. My tone of voice was rising again.
The ER director gave me a hostile stare. “Back in her room… where she must stay while under the protective order.”
“You still haven’t shown me this so-called order!” I shouted. “I’m going back to be with her.”
“No, you’re not… you and your sister cannot come back into the emergency room again, as long as your wife is in there.” She continued to stare at me. “If you try and re-enter the hospital, you will be arrested.”
“What?”
“You heard me… now go home. We will call you when your wife has been transferred to the behavioral hospital.”
I was breathing hard again. “No… I will not go home. You have no right to keep my wife against her will… and my will.” I paused. “You also have no right to keep me from my wife’s bedside, but since you threaten me with arrest, I will wait right here until the police escort shows up.”
My sister and I waited in the parking lot for another hour. The police escort drove up. It was two police officers in an SUV. The vehicle had a cage in the back, presumably for violent criminals. Or dogs. The emergency room staff rolled Lena out, and the officers—without saying anything to me—helped her into back seat of the car and drove away. Brenda and I followed them at 85 mph, all the way to the behavioral hospital. It was after dinner, with no evidence that Lena had eaten. The behavioral hospital staff checked her in by asking me for all the information they needed. I made sure to show them my medical power of attorney and Advanced Health Care Directive, drawn up in California.
I hugged my wife and told her I would be back in the morning.
“We have a no visitor’s policy,” said the nurse’s assistant in charge, matter-of-factly.
Here we go again! “Like I said, I will be back tomorrow to see my wife,” said I, glaring at the nurse.
A phone call at six in the morning mooted my defiance of hospital policy.
“Your wife suffered a fall in her room, sometime early this morning, Mr. Schiller. It is our policy to inform you.”
I was now fully awake. “Is she okay?”
“She’s fine… no injuries.”
“I’ll be in as soon as I can get there.”
“We have a no visitors policy.”
“I’m aware of that… I also have a policy. I must see my wife face-to-face to make sure she’s okay.” I glared into the phone. “I’m sure you understand.”
The nurse hesitated. Then she apparently decided not to fight me on this. “You can see her this morning… but only for a few minutes.”
I hesitated, trying to keep my temper under control. I failed. “It will only take me a few minutes to bring her home!”
“She is under a protective order and cannot be removed from the hospital until the order is lifted.”
“I’ve been demanding to see that order for the last four days… you must show it to me when I come in,” I almost shouted into the phone. “I am her medical power of attorney, and I am protecting her… from you!”
“You must be her legal guardian in order to see the protective order.”
“That’s a new one… and, no, I have not been designated as her legal guardian. She’s my wife, not my teenage daughter!”
I rushed to the hospital and verified that Lena was okay. The nurse brought her out from behind a locked door to meet with me. She looked about the same as when I had left her bedside at the first hospital. At least she had her own room… or so they told me. I asked the nurse’s assistant a lot of questions. Although she did not tell me outright, it was clear that Lena had been lumped in with patients having serious mental health and addiction issues. After thirty minutes, I drove back home and brooded. I called every day… to ask how Lena was doing and how long they intended to keep her. In one of these calls, a nurse’s assistant told me—with shocking tone-deafness—the hospital was “like Hotel California.” The one doctor on hand, who never talked to me directly, estimated Lena would be there about two weeks.
I hung up the phone and cried.
Later, I found out that Texas simply does not recognize my Advanced Health Care Directive. I referred the incident to the Texas Disability Board. They are investigating why both hospitals used mythical “protective orders” to hold my wife against her and my will (a year later, there is still no evidence such an order exists). We are still waiting for the board to issue its report, but it has become clear that the hospitals, desperate for revenue, considered Lena’s presence a stream of income. In other words, they were using my wife as a cash cow. To do that, the behavioral hospital decided (without consulting me) that Lena was competent—even though they knew she had late-stage dementia. I discovered during the investigation that they had made her sign a consent-to-provide-treatment form.
So much for due process.
***
While the behavioral hospital confined Lena, I called Brenda. We began a frantic search for a memory care facility with an available room. It was clear to us that Lena could never go back to the apartment and live with me. Luckily, we stumbled on just the right place. As we walked into the common area, unannounced, there was music in the air. It was a Sunday afternoon. Most of the residents were awake and sitting in comfortable chairs, engaging (as best they could) with numerous caregivers and even other residents. This was the best atmosphere we’d seen. Brenda pointed out as we were leaving that it was the only memory care enclave we’d visited that did not smell of urine. We could not find any insects. It was an older building, but clean and welcoming. With a long porch in front, the house did not scream “institution.” It looked like a large home, set back from the road, surrounded by trees.
Ready to commit most of my monthly income, I signed on the next day.
Asking Why
Going back to the apartment without Lena, I had way too much time to think. It was easy to see how someone in my position could start to believe in victimhood. How grieving could turn into alcoholism or substance abuse. How the healthy spouse could go downhill in a hurry. I vowed to remain healthy so I could be there for Lena. My well-being would have to be a priority. That meant I would need to catch up on my own health care, most of which I had deferred while trying to take care of my wife. I would also have to stay fit and find a way to get enough sleep. When Lena got to memory care, she would need my love more than anything. I vowed to deliver that love with softness and humor on every visit.
How did this happen?
Lying awake every night, I tried to understand how Lena could have contracted Alzheimer’s in the first place. There are, I learned, many possible causes… and they interact in a sort-of stew that leads to changes in the brain. Genetics was the first root cause that came to mind. There was no history of dementia in Lena’s family (although her father and two of her uncles did not survive the war to find out). That didn’t mean genes played no role at all, but there were also lifestyle factors to consider. Like most German girls in the 60s, Lena smoked cigarettes to be cool. After a short time, she quit cold turkey. Drinking alcohol was limited to social occasions… until an early heart attack (caused by a spasm, not heart disease) prompted her to stop. She did not have diabetes (although one of her grandmothers did). Lena’s blood pressure was too high, but she had it under control before the onset of the disease. Her diet was mostly Mediterranean and Asian, while a statin medication took her cholesterol way down. A recent theory suggests statins may play a role, but I take a statin too, and I have not suffered cognitive decline. None of her other medications are on the “suspect” list. Lena was a gym rat and a swimmer for most of her adult life. She had a good figure, even into her seventies. A recent study pointed to the possibility that air pollution may play a role. Except for two years in Washington, D.C., Lena never lived in dirty air.
So, what was it? Post-traumatic stress? Bad luck? God’s will? We will never know.
Brenda and I had almost two weeks to furnish Lena’s room, the biggest room they had. I was obliged to buy everything because our household effects were still in California. We made Lena’s room look like a studio apartment, with pictures of her and me as younger people, as well as some of her best nature photos, hanging on the walls. On the appointed day of discharge, Brenda and I drove to the hospital and walked Lena to the car. She was still wearing paper pajamas and the warm jacket I had given her going in (she had never taken it off). The hospital kept her other clothes (even after I asked for them). I was so happy to get my wife out of their clutches that I did not argue. I did ask one more time about the elusive protective order. They would not show it to me—but the head nurse explained solemnly that the order would expire as we exited the building.
Brenda and I delivered Lena directly to the memory care facility. We walked Lena into her room, and my sister left to give me some privacy with my wife of 42 years. Lena and I sat on a loveseat, looked into each other’s eyes, and started crying. I cried with the knowledge she would never live with me again. She cried because I think, deep down, she knew this was where she would grow old and die. The Germans have a phrase for such a place: “Endstation.”
No translation needed.
Lena never cried again. For better and for worse (at least on the surface) she continued to be unaware of where she was or what was happening to her brain. Lena would never be able to shape the end of her life by sharing final moments with friends and family. There would be no tearful goodbyes, no opportunity for Lena to give her sage advice to the next generation, and no time for her to reflect on what she had done with her life. Lena as a family member had been gone for years; the Lena in memory care would simply fade away… hopefully in the of presence family. Lost in the mist, she would ultimately become a wonderful collection of memories and pictures for all of us. But, in the end, she would be unable to appreciate just how much we loved her.
Or maybe she would. We could only hope that a flash of clarity at the very end of life might comfort her as she passed on.
Tears filled my eyes again as I drove home to the apartment where I would live alone for however long Lena managed to survive… and long after that.
Meg, Eva/Lena loved you like a daughter. I wish we could have her back the way she was… but God has other plans. Thanks so much for your encouragement as I continue this project. I want to help others avoid the mistakes I made during the first part of this journey. Paul/Eric
heartbtaking account.