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January–March 2012 Lake Constance Rehabilitation Center

At the end of January 2012, the time had come. My sister Beate and I picked Gerd up in Wangen in the morning, packed his things and accompanied him to the exit. Suddenly, Gerd stood still and began to cry in the stairwell. It was totally unexpected and I couldn’t cope with it at first, so I tried to calm him. “Look Gerd, you’ve come such a long way already. You can leave this clinic on your own two feet now and get into our car without help! When you came here 10 weeks ago, you were still in a coma and no one knew if you would ever wake up again in the first place!” “Yes. Yes, you’re right!” Gerd said. He took a very deep breath and squared his shoulders before he entered the elevator which took us down to the clinic exit.

A few weeks later, I learned that one should never try to suppress or hold back tears because those are melted ice which was built up to protect a broken heart. So crying meant the only way a heart could liberate itself to heal, allowing one to breathe freely and finally love again!

With the many other disabilities Gerd had to face now, caused by the oxygen deficiency which had damaged his brain, we had nearly forgotten about the original trigger, namely, the heart attack. Today, his heart finally responded and took an important step toward freeing itself from its suffering!

It was a beautiful, warm pre-spring day in January and we were driving from the Bavarian Alps to Lake Constance, trusting another important phase was starting.

But when we arrived, we were faced with a harsh reality: Gerd was not admitted to the highly praised and acclaimed rehabilitation ward, but was instead booked in the secure ward for the mentally ill!

I hadn’t expected this; I wasn’t aware that this was even an option and the shock shook me to my core. Reaching the second floor of the clinic, you had to ring a doorbell to be admitted by an employee. At the end of the long hallway, a common room was found which was bright and practically furnished. The gorgeous view of Lake Constance which glistened peacefully in the spring sun was so peaceful. Unfortunately, Gerd wasn’t able to enjoy this view, since he couldn’t see.

Moreover, I had no idea how many other patients Gerd would be confronted with here. How was he supposed to find his bearings in a group of people he didn’t know and couldn’t see? He was completely defenseless with his severely limited perception! How was I supposed to drive home and leave him there in good conscience?

Gerd shared a room with another patient, a young man who barely spoke, but apparently fared very well.

The room was sparsely furnished with two beds next to each other against the wall, a small table and two dressers. The wardrobe was locked! So, every time I wanted to put Gerd’s clothing and underwear inside, I had to ask a nurse to unlock the doors first!

Luckily, a young employee soon took him under his wing. He was able to hold a decent conversation with Gerd by asking him about his job. That helped a lot and the two were quickly deep in conversation about countries, people and travels so my consternation slowly abated, but my fear remained.

I still felt like I was betraying Gerd when Beate and I left the secure ward and he remained behind the glass door. Waving his hand, he tried to smile bravely. My heart broke again at the sight of him standing there all by himself. How many times can a heart break before it finally kills you?

I felt numb as I drove home and tried to convince myself over and over again I had done the right thing and acted in Gerd’s best interests. But why did I feel so terrible then? My sister sat glumly in complete silence in the passenger’s seat, giving me the feeling she would have preferred taking her brother-in-law right home with us.

The next day, I wrote this letter to the doctor who had admitted and examined Gerd to his new clinic:

Dear Doctor Gut,

Let me thank you very much for the friendly manner in which you received my husband and me yesterday.

During your examination, I noticed that my husband was completely off-center. One shoulder seemed higher than the other and he didn’t put equal pressure on both feet while walking and instead only stepped down on the balls of his feet. His speech was also very slurred when normally, it is very clear. On your professional opinion, is there any chance he suffered a mild stroke?

I still have a lot of paperwork to complete, but would like to first provide you with the medical reports I have at hand.

Unfortunately, I am not in receipt of the reports from the initial intensive care clinic, so perhaps you might request them directly?

You asked for a brief resume enabling you to get to know your patient better and talk to him about topics that might interest him in order to obtain his attention.

Résumé

Gerd is 49 years old; we are married for 25 years and are raising 2 children together.

Daniela, 23, currently living in Chicago, has not seen her father since he awoke from his coma. However, they talk on the phone regularly.

Justin, 16 years of age, is attending secondary school.

He was there when the heart attack occurred, notified the emergency doctor and actively performed first aid himself. The emergency doctor later said he had saved his father’s life.

For the last 20 years, Gerd has worked as a project manager all over the world, commissioning complex machine systems. That includes, in particular, cooperating both with clients and sub suppliers in order to obtain optimal working conditions and, finally, training the employees on site. He was therefore often away from home for a couple of months in a row.

He partook in all kinds of activities, aiming to get to know each country and its people when he traveled. He was always a very active person and was therefore appreciated and feared as a “Doer”. Now, it seems he gets to know the other side of life.

In his free time, he likes to hike or play soccer where he recently started coaching the youth team.

The next day, when I returned to the rehabilitation clinic, they had put diapers on Gerd. He wasn’t able to go to the bathroom on his own I was told tersely when I asked the head nurse. Oh yes he was, he just needed someone to show him the way there because he couldn’t find it on his own anymore because he lacked orientation in the new and strange environment.

At the clinic back in the Alps, Gerd was always dressed in casual clothes or his pajamas but no one had ever put him in diapers. I couldn’t handle this awkward situation. Going to the toilet was part of human dignity in my opinion. I had several discussions with the head nurse but without success, because I continued to find Gerd in diapers. It was a pitiful sight. I could only hope he wasn’t aware of this humiliation.

But Gerd proved I was very wrong. Once, he was even wearing two diapers, one over the other. “Double protection,” he tried to excuse himself. Obviously, that is what they had told him. Presumably, he had been given a laxative so he now required this “double protection”.

He was suffering terribly under this helplessness which was both humiliating and discouraging for him. This must have been torture for Gerd, who had always placed great value on personal hygiene and was never seen in his sweatpants and would never have gone to the bakery on a Saturday morning in inappropriate clothing!

Besides, he continued to worry about his future. He was particularly concerned that Justin might suffer because of his dad’s sickness. What did he mean by that exactly?

In any case, he repeated this statement over and over, “Justin mustn’t suffer from me being like this.”

Since he still had the gastric feeding tube, although he had been taking part in the communal meals in the dining hall, I was called to the clinic one day during the week. I was supposed to accompany Gerd to the municipal hospital in Constance where the tube would be removed.

I wasn’t confident enough to drive alone with him because my nerves were shot at that point, so I requested an ambulance.

Unfortunately, the ambulance couldn’t stay until the operation was over, so Gerd and I spent way too many hours at the hospital where we first had to wait for his surgery, which was performed under local anesthetic, and then we waited for a second ambulance to take Gerd back to his clinic.

Instead of lying down and resting right after the procedure he had to sit on a regular chair and wait in the hallway until paramedics came back. I was deeply concerned about his condition; after all, he now had a hole in the middle of his body that was only provisionally taped up.

Now, he was strapped to a seat in the car and the trip back started. It was very bad luck that the seat was only attached to the floor of the ambulance by two bolts instead of four as it should be, so he swung back and forth every time the ambulance went around a curve!

This was both a dangerous as well as a horrible situation for Gerd with his limited perception and especially after the excitement of the surgery. So I tried to get a grip of Gerd’s seat from where I was sitting right behind him, so he wouldn’t tip over.

It was quite a miracle his wound from the gastric feeding tube didn’t get infected after waiting for so long in a hallway at the hospital and the dangerous ride in the ambulance! But once again, Gerd’s guardian angel protected him.

Quite often I received calls from the attending physician early in the morning while I was on my way to work. She usually would tell me Gerd had had a restless night. He was crying a lot and went back and forth between being depressed and aggressive. She wanted to know if this had been the case at the previous clinic too. If so, how had they handled it there?

On the one hand, I was glad the doctor was seeking close contact with me, but how was I supposed to answer that question? I was just a regular wife who was being confronted with such a situation for the first time and not a trained psychiatrist! Why didn’t she just call the other clinic directly and have a detailed conversation with the doctors there? And why, for Heaven’s sake, couldn’t I tell her exactly that to her face?

One morning, I had just stopped at a bakery to buy a sandwich when my cell phone was ringing. Since I didn’t want the other customers to hear my conversation, I left the shop and went outside.

Sleet fell from the sky, the bag with my breakfast started to dissolve and my croissant fell to my feet as I desperately tried to find a solution with the doctor. Still I didn’t have any advice and was completely overwhelmed by the whole situation.

My initial reaction had always been to turn around and hurry to Gerd right away, take him in my arms, stand by him and try to soothe him. But how long would that work? What if it happened again the next day?

Every evening after work, I drove to the clinic at Lake Constance anyway so I could at least be of assistance when he ate supper.

One particular evening, we were sitting at a small dinner table together. His food tray stood in front of him and Gerd started eating while I prepared another sandwich for him when he asked, “What about you? Don’t you want something to eat?” No, there was nothing available for me. Hearing that upset him a lot and he offered to share his second slice of bread with me.

When he lay in bed later that night and the lights were about to be shut off and the door locked, he said in a sincere voice, “I don’t want you to go home!” He was afraid to stay on his own. Ultimately, he resigned himself to it. But how long could I keep coping with this emotionally? I was torn by the circumstances. I wanted to be there for him, but had to continue living my life as best as I could. And the stress of being there for him 24/7 simply would have been too much for me to bear. The doctors and nurses agreed with this point. If someone required full-time care, it only worked long-term if the caregiver wasn’t too strongly emotionally involved.

Whenever it was possible, we left the secure ward during our visits. In the beginning, we didn’t get any further than the first floor where a few places to sit were found in the foyer. We stretched out on a couch and after a few minutes, Gerd lay his head on my lap and fell into a deep sleep. At first, I felt rather uncomfortable when other visitors passed by. But eventually I was able to handle it and was glad Gerd truly found some peace there. When he slept so peacefully I was certain he had no frightening dreams to experience and was not being plagued by psychoses and just wanted to hold him tight forever while imagining us in an illusion of safety.

After a while, Gerd was allowed to spend every second weekend at home. When I picked him up early on a Saturday morning, I usually met him in the common room at a neatly set breakfast table. A nurse had poured him some coffee and prepared a bread roll with butter and jelly, but the delicious food laid untouched on his plate while Gerd sat before it in complete despair. He didn’t know where he was, he didn’t know food was placed in front of him, but he knew exactly who he was and that he wanted to go home!

When I gave him a kiss and said hello to him, he answered, “Thank God you’re here!” and immediately started to cry in his misery. To distract him, I said, “You haven’t even touched your breakfast. Aren’t you hungry at all?” “Do I have something to eat?” was his surprised, honest response.

When we arrived home together for the first time after the heart attack, I could hardly believe our luck. I was absolutely convinced Gerd’s memories would simply come back to him now! Certainly, when he was in a familiar environment, he would just have to remember everything. As well as I could, I suppressed the possibility that he might also go into shock as well.

I had parked the car in the driveway and, full of expectations, opened the passenger door so Gerd could exit. He didn’t need any assistance to do so! First, we stood outside the house for a while right where we had all been standing on July 31, 2011 before Gerd and I took Daniela to the airport.

Then we went through the door, carefully climbed the stairs and walked into the kitchen. Now the big moment had finally arrived. Some kind of miracle just had to happen now! Gerd apparently sensed my tension and slowly walked back and forth in the room, moving from the window to the table and back. But nothing happened at all.

“Is this where I live?” he asked monosyllabically, in disbelief. He didn’t know his way around the domicile at all anymore.

First, I tried to convince myself this was due to the fact that we had renovated recently and done a bit of remodeling, too. Maybe he would remember the old kitchen better? But eventually I had to admit that he was simply a stranger to his own life.

Apparently, Gerd also had high expectations of his return home. After all, resuming his former life style continued to be his greatest wish. But the weekend at home didn’t get him any further, or at least, it didn’t get him any closer to his goal. Instead, he seemed discouraged and disappointed even more.

Moreover, the ride back to the clinic on Sunday afternoon grew more depressing every time for several reasons. His time at home hadn’t resulted in the desired breakthrough and we were well aware that Gerd would be more or less on his own again, confronted by other patients who were foreign to him. For instance, when he asked for something to drink, he never knew if he was talking to a nurse or just another patient. So sometimes he received an unfriendly reply or even no response at all to his request which of course made him feel insecure and uncomfortable which in turn resulted in him avoiding contact with his ward mates entirely.

I didn’t notice any significant progress in his development although he had gone to Lake Constance to start reintegrating into normal daily life.