Again, it’s been months since I’ve posted, and one of the reasons is, I get overwhelmed by trying to walk the tightrope between fiction and reality. In this blog, everything I have written is true, except for the names. Keeping the names straight is difficult, because none of the people I’ve written about have the names I’ve assigned to them here. I see that in my last posting, I even got it mixed up once, calling Michael by his real name, or the name he wants me to call him, Peter.
I gave Peter and those close to him fictitious names because I wanted to protect them in case he our story ever became famous. But then, I figure, even if he or I did become famous, readers would easily find out our true identity. So why not keep it simple and go for the absolute truth?
So, here are the true names of the major players.
Michael = Peter, whose name in German is Klaus-Peter
Chris= Jon, whose full name in German is Johannes
I= Noreen Caregiver=
Maciek (pronounced MAH-chick)
Again, months later. It is very difficult to find time to write this blog, but I believe it is important, so here we go again.
Peter was doing amazingly well in the months after he returned home. People had been telling me prior to his return that this would be a mistake, that there would be no time for myself, that I would become a martyr, that I could even become sicker than the patient. But that didn’t happen! To the contrary, his condition improved, and I enjoyed finding things to do that were good for both of us, because I was determined NOT to become a martyr.
Through months of therapy, Peter began taking a few steps independently, and also to use his voice. We went to get Peter’s passport and identity card renewed, and Peter signed the documents himself! He was eating more and more and in such large quantities that we reduced the tube feedings to one a day. We went away on several outings. One of my nieces came here from America for a visit, and we went on an all-day outing in June – Peter, Sarah and Maciek, Peter’s caregiver. We went on a boat trip on the Rhine River, returning in the evening. Peter didn’t say much, but Maciek was deeply impressed by the beauty that is to be found in Germany. As a live-in caregiver, he hasn’t had much opportunity to discover the land he is now living in. We all had great pleasure that day, enjoying looking up into the beautiful blue sky, being warmed by a relatively rare hot sun, calmed and cradled by the steady quiet rumble of the boat. Sarah loved being on the Rhine for the second time in her life. I loved not having to do anything for a few hours, and also seeing all the people around me happy and content. Peter’s stony, Parkinson- and stroke-smoothed face didn’t show much emotion, but his hands, sometimes jerking in spasms, revealed that his soul was stirred by the specialness of the day. Days like this made me happy.
But days at home, doing simple things like preparing a meal with Peter and seeing how more he quickly was slicing cucumbers than in the beginning months of his time at home, made me happy too. It made me happy to see him riding our exercise bike on the terrace, while I dead-headed geraniums. I enjoyed making videos of his progress and sending them to family and friends. These things sweetened my days. I felt purpose in my life and the sense of God’s smile over everything we did. I did activities on my own too, meeting with friends, singing in a choir, leading a small international home group in our church. I went to the gym, secure in the fact that Peter was in Maciek’s competent hands. I even went away for three weeks to England and Ireland with Sarah. In November I went away again for a few days to visit friends in Italy. Life was full and rewarding. When Peter’s GP came for house visits, she was amazed to find Peter reading the newspaper, or writing something in German as an activity for speech therapy. She marveled at how smoothly our household ran and at how contented I looked.
Peter started to attend church with me on a fairly regular basis, joining right in with the singing, smiling after the service as people walked up to him and greeted him after the service. Maciek came along several times because he liked being in our church and the way we worship God.
You might ask how I could be happy in this situation. There was, after all, no way out, and Peter’s mental condition was greatly diminished. That’s what I thought, right after his stroke. How could I ever be happy again? But it was possible. One of my friends often told me she had never seen me so content.
I think the main reason I was was that Peter’s emotional state was more peaceful than it had ever been before. Every time I asked Peter how he was, he would say, “Fine. I’m truly content with my life.” Sometimes he would say, “I have absolutely nothing to complain about.” Or: “I feel at peace with my life.” How different from the statements I used to hear from him: “My life is a wreck.” “I won’t make it to sixty.” “You’ll soon be a merry widow!” said in a cheery voice, seemingly to torment me all the more. Before Peter’s stroke, he had become increasingly irascible and negative about his life. He didn’t trust me enough to share any of his interior life with me. I knew he was struggling with issues from his past, but he wouldn’t share them with me, instead pushing his projection of me into my face with fake cheeriness, like “You’re doing so well!” “My wife is perfect.” They sounded like messages of anger and resentment. He had other health issues as well. His abuse of alcohol before his rehab was always a sword hanging over me. Would he relapse? He was just as unhappy after rehab as before.
Now, in a state of mental and physical incapacity, Peter was the most pleasant person I knew to be around, always pleasant and courteous. Therapists and home health aides would comment on what a lovely man Peter was. He did his therapy cheerfully, and he was grateful for all the little things we did for him. He ate his meals with gusto. I enjoyed doing all the activities I chose for us to do together because Peter did them so cheerfully. We played Uno and other games. We played catch with a balloon. We went on outings, sometimes just the two of us, in the car. We watched TV and listened to audio books together. He would kiss me often and mouth out “Reenie”, sometimes lifting his hands in his old gesture of exuberance. I enjoyed the mini-conversations he had with me when he was mentally more alert. All in all, Peter was making progress, and I rejoiced with him, as did Maciek.
I was proud of the man my husband had become. I was proud of his determination to make progress and his patient, steady work during and between therapy. The therapists marveled at his progress. He had become a man I could respect with all my heart. He was the same man on the inside as on the outside.
There was another thing that strengthened me enough to give me contentment – my Al-Anon meetings. I no longer had an active alcoholic in my life, but a new problem just as overwhelming – the aftermath of a devastating stroke, and seeing the wasteland it left my husband and our life in, after it washed away. The aftermath of such a stroke leaves a mass of destruction, every bit as overwhelming and disheartening as the aftermath of a tornado, which I have also witnessed. Facing the aftermath, life feels unmanageable. So I go to these meetings. Every week we read an opening statement, and a sentence from this speaks very powerfully to me: “We discover that no situation is really hopeless and that it is possible for us to find contentment and even happiness, whether the alcoholic is still drinking or not.” Reading that every week, or whenever I find the time to attend, I find hope, and from this hope comes the strength to find and live in this space of contentment. I find myself saying this to myself over and over again, and believing that this is possible for me.
The main thing that still bothered me was how often Peter spaced out into a dream-like state, a trance, or even sleep, and his tics. He often slept hours during the day and was awake at night, rattling and shaking his bed at night, keeping me awake. Annoying wax clogged my ears from the ear plugs I wore to silence Peter’s nocturnal noise, necessitating a couple of visits to the doctor. I had so many sleepless nights, I started sleeping in the living room, and then decided we’d have to move Peter into the study.
Peter and I spent many hours in the study, sorting through books, with Peter making the decision of which books to keep and which to give up. He often woke up from his sleepy trances by sorting books, and would stay awake and alert for the rest of the day. Sometimes he would stop the work and read one of his books. It took weeks to move enough books to make a bedroom out of the study. At first, Peter didn’t like the idea of sleeping in a different room from me, being forced to sleep in a room that was formerly his study. After a couple of nights, however, he said to me that it was nice sleeping near his books. I was relieved, satisfied to finally have a lovely room of my own, a space to relax in that was mine alone, not to be shared. Less and less of the martyr. Perhaps I could even find myself seeing my life as one of fulfillment, as my friend saw me.
The neurologist acknowledged my complaints of Peter’s sleepiness, which I attributed to an over-dosage of levetiracetam, one of his epilepsy medications. I attributed the tics and Peter’s disorientation (he still believed his mother was alive, for instance) to the huge amount of medications he had to take. The neurologist agreed to start lowering the dosage, while starting him on a new medication. He was to begin this new plan on January 1 of this year.
Christmas was wonderful. Peter was soon going to get a chance to wake up and become more normal. Our son Jon came home for Christmas. We went to the Christmas market, ate out in a restaurant, and enjoyed great meals with Peter and the substitute caregiver, while Maciek was away in Poland.
A few days after Christmas, Jon went back to Korea, where he lives with his Korean wife, and then disaster struck.