- -
- 100%
- +
The display showed pictures and figures and one was supposed to say their names aloud. Or it said English words which the person would repeat in German and vice-versa. Intuitively I thought it would be good training. But then I started questioning everything: what if Gerd was insulted by me bringing him a child’s toy, or even worse, what if Gerd couldn’t operate the child’s toy after all?
Nevertheless, I dug out the yellow-red colored laptop from the garage. It even still worked perfectly after all these years! I tried out a few programs and everything went smoothly. I almost wished the stupid thing had been broken, since that would have made the whole matter moot. Should I take it to the clinic or leave it? Could I handle the disappointment if Gerd couldn’t handle the toy?
A few days later, Gerd’s hiking friends came to visit. They had driven to the Alps with mixed feelings and high expectations. They must have felt a bit melancholy on the drive, since they had just driven the stretch with Gerd a few months prior to go hiking in the mountains and spend a weekend of camaraderie together. This time, they even brought alcohol-free beer with them as a treat for Gerd.
No one ever told me exactly what happened that weekend, but his friends had not been prepared to see Gerd like that. Sure, they knew he needed help, but the fact that his disabilities were so complex was hard for his friends to cope with and very few of them were able to handle it at all.
Even worse, Gerd couldn’t remember his friends’ visit later on. When I asked him if he’d had visitors, he denied. Had his friends given him a gift? What had they talked about? He responded no to all of my questions and when I tried to press him, he only grew angry.
A few weekends later, Gerd received a visit from his friend and supervisor, Robert. He arrived with two huge bouquets of flowers together with get well cards signed by Gerd’s colleagues and the management.
I had encouraged Robert to visit Gerd in the hospital earlier, but he always used the excuse that only close relatives were allowed in the intensive care unit. Robert had experienced his own “ground zero” a few years ago when he was in a coma for a couple of days after having a stroke. So he knew approximately what to expect with Gerd. Now the time had come for Robert to face his own fears and visit his friend and colleague.
That Sunday, my mother and Justin had both joined me going to the clinic. When Robert arrived, Justin met him in the parking lot to show his way to the ward.
Before he was allowed to go into the hospital room, we all had to wait in the hallway while the nurses got Gerd ready, strapped him in to the chair and then wheeled him out.
For some reason, I was terribly nervous. Sometimes, Gerd wouldn’t let the nurses touch him and screamed as they washed and dressed him. Somehow, I constantly had the feeling I had to protect him and make sure he made the best possible impression on the others. If Gerd didn’t recall something or couldn’t say anything, I felt like I had failed personally. Like an over-motivated mother that felt guilty when her child got bad grades in school. For years, I still believed Gerd couldn’t cope with his disability, couldn’t accept his fate, but finally I realized, I couldn’t either!
Whatever Robert may have thought when he saw his friend, he kept it to himself and talked to Gerd as “normally” as he could. I breathed a sigh of relief. Robert was in fact one of the few people who was able to deal with Gerd’s condition. And Gerd was clearly happy to see him and would have loved to return straight to the company with him and start working again.
Although it was fairly cold outside, Robert took Gerd for a walk through the gardens at the rehabilitation clinic and when they returned his face was all smiles. Robert had the feeling Gerd could see very well, since he looked back at the people they ran into and was able to differentiate between men and women! Robert’s positive feedback was proof to me that Gerd really was making progress.
Over the next few weeks, his rehabilitation program was expanded: practicing eating and drinking with therapeutic supervision was now added to the plan. Besides, Gerd also started practicing walking on a treadmill. In order to prevent the risk of falling, Gerd was strapped to the two handles.
Whenever Justin was nearby, he had to assist the nurses with their work. When doing so, the boy usually proved acting far more sensitive than the therapists.
Apparently, time was always too tight so they couldn’t wait until Gerd had gotten into his wheelchair himself, with his feet properly placed on the rests and ready to go. Therefore, once I got to witness as one of them forcefully turned the wheelchair, tipped and pulled it backward when Gerd couldn’t put up his feet right away! I can still see the panic on his face as he suddenly was being jerked down and back and I am convinced that the shock alone nullified the benefit of that therapy session.
Another time, he was carted up a ramp in the wheelchair and was requested to get on the treadmill himself. But it didn’t work, no matter how hard Gerd tried. Two therapists pushed and pulled at him and encouraged him in loud voices, but nothing helped. I could hear them growing angrier and louder as Gerd drew all of his strength together and finally stood up on the treadmill; with the wheelchair up in the air. They had forgotten to release the straps connecting Gerd to the vehicle first! Tears welled up in my eyes and my throat tightened with anger. I wanted to scream at the therapists, but didn’t. They were clearly embarrassed, but they didn’t apologize to Gerd after all.
A few weeks later, Gerd managed to walk on his own again without help! At the same time, his mind became clearer and we often lay together on his bed in the evening and made plans what to do if he could leave the clinic, completely healthy, this very day. As usual, his biggest priority was set on his working life. The very first thing he wanted to do in case of a miracle healing was going back to “his” company, start traveling and visiting “his” customers again.
At one point, we both realized that couldn’t be in his best interest, since there clearly had to be a reason for his heart attack. Now he was given a new life and this time Gerd had to follow a new and better path.
So we thought of alternatives. In our minds we started a company of our own or imagined selling German pretzels from a booth in some exotic country where we both felt comfortable. But no matter where our day dreams took us, it remained always most important to Gerd that Justin did not suffer from his disability. He didn’t want his son to give anything up out of concern for his father.
We just had to accept that Gerd’s disabilities were far more than “just” blindness. They were complex perception disorders in the broadest sense. His mood fluctuated between two extremes. Once, he was full of hope and convinced he would overcome it all and lead a “normal life” again one day and from one minute to the next he would fall into deep despair and his face expressing a look just like “The Scream”, a famous drawing by Edward Munch.
He often was found walking down the hospital hallway and asking passing nurses or visitors where the terminal was. He had to catch an imaginary plane to Paris and just failed to find his way! It was beyond doubt that his job had remained Gerd’s top priority even now; his subconscious wanted to go back to work! Moreover, he often spoke to people in English instead of German. Did he believe himself being on a business trip in his mind?
Because wandering up and down the hall might also be dangerous for Gerd, precautions had been taken. So one day, when I came to visit, I found him strapped to his wheelchair once again. He was not aware what kind of a vehicle he was sitting in and complained instead, “I want to get out of this car! Get me out here!” He was completely disoriented, “Where am I? What day is it?” He asked these questions incessantly without really being able to understand the responses. I often met him in the hallway, deeply saddened, his face covered in tears. He wanted to go on a trip, but couldn’t find his ticket, he explained.
These terrible hours of depression were followed by phases of complete overconfidence when he wanted to make a phone call, for example, even though he couldn’t push the buttons because he didn’t even know which way to hold the phone. He wanted to go home and resume his normal life, though he would never be able to get his bearings. He believed that if he just managed to leave the hospital, everything would return to “normal” again.
My mother and Justin accompanied me to the hospital almost every weekend. It was the year of his final exams, and Justin’s grades were suffering a lot due to the pain he felt over his dad’s sickness. The boy hadn’t been able to catch a good night’s sleep for months. Whenever he closed his eyes, he remembered his father fighting for his life. His teacher was of the opinion that Justin should be over it after six months! He probably thought the same thing we did earlier; that after surviving a heart attack, Gerd simply would have to focus on living healthier, changing his eating habits for the better, lowering his cholesterol and taking long walks in the fresh air more often. None of us could imagine the challenges we and especially Gerd would have to face every day instead.
The whole nursing staff devotedly worked with Gerd so he would regain a certain level of independence. With the patience of angels, they encouraged him to shave his own face by placing a razor in his right hand so he could do a few strokes. If he had repeated a movement once or twice, with supervision, he was actually able to continue on his own. But then he would stand there, helpless in front of the mirror, wanting to put down the razor without knowing how to do it and where. That proved his muscle memory was still working, but his brain simply wasn’t able to properly process the whole information.
One nurse even rubbed healing oil on the soles of his feet every night and sang Indian mantras and healing songs with him. On those evenings when she was on night shift, I could drive home, feeling completely at ease, assured Gerd would sleep well and was being cherished.
Although Gerd was cared for so lovingly in the Alps, I still pressed for him to be transferred to the rehabilitation clinic at Lake Constance, because that facility had a very good reputation with respect to therapies and reintegration into daily life. So I got in touch with the head of that clinic and did everything in my power to get my husband’s transfer started.
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.