My Husband's Last Days

6 Jan 2020

My husband Klaus retired from his job in an international bank in London in 1994 when he turned 60. As our son Paul was then still at school and I was busy with work, he decided to stay in the UK. However, in 2003 and after spending most of his adult life outside Germany, he chose to go back home to Muenster, his heimat. Muenster in the state of North Rhine-Westphalia was by now a place of some 300,000 residents.

By then, I had forgotten what little German I knew, and I didn’t want to be marginalised in my old age, when relearning the language became more difficult and where few people I met spoke sufficient English. Accordingly, I remained in the UK until I too decided to return to Manila. (Klaus found Manila too hot, too many people, and too much traffic).

In order to keep the family together, we retained our London home and went for holidays two or three times a year, keeping communication running through social media. As a stopgap measure, it worked wonders, and we became closer than when we were living together.

However, towards the end of 2013, Klaus was taken ill, and the next three years—until May 2016 when he died—were to be a highly traumatic experience for the whole family.

Paul and I stayed in Muenster whilst Klaus was in hospital with double pneumonia. But soon after we left when we thought he had recovered, he was diagnosed with dementia. The social worker from Caritas, a Catholic organisation in the deeply Catholic Muenster, informed the German Court that they could not get in touch with the family who lived outside the country, and in no time, the Court had appointed a legal guardian. Apparently, in cases where someone had not left a document regarding guardianship should they become incapacitated, the Courts would decide whom to appoint. Klaus would later explain he simply didn’t know such documents were necessary. However, because of the dementia diagnosis it was now too late for him to do anything as he was thereafter considered incapable of making reasonable decisions.

It was only from the email of Klaus’ friend that I learned about the appointment. Initially, it made sense to me as it was indeed true that I lived far away in Asia, and that perhaps some local who spoke the language would make a better guardian. Paul still had a year left at university and could not move to Germany until after he graduated. However, I didn’t know that even as family, we would have no rights whatsoever. When I soon visited Klaus in his flat, I found that he had not been adequately cared for, even though he had a full-time, supposedly live-in caregiver. By then, he had physical difficulties moving around, but his apartment, especially his bathroom, had no grab rails, no bathmats, nor anything else to make it safe. His caregiver simply had the skills of a housekeeper. She stayed in a separate apartment next door, with no means of electronic communication between them. She mostly came in to serve his meals and to clean. The lone service I appreciated was the roving nurses who came twice a day to give him his medication and to ensure that he took them.

In no time, it was apparent, however, that the real bottleneck was the guardian herself. When I next visited Klaus a few months later, he was up for diagnostic tests in another hospital whilst his caregiver stayed and waited in her assigned apartment. I was informed by the hospital staff that Klaus had not had a change of clothes for almost a week because they could not get in touch with the guardian. She alone could give instructions to the caregiver, but it later turned out she was on holiday in Barcelona.

Paul was in and out of Germany helping me as he spoke fluent German, and most people in the health profession spoke little English. One time, he missed his final exams because he had to fly to Germany on short notice. We had received an appointment to see the judge, and we wanted to persuade her to award the guardianship to Paul if he promised he would go look for a job in Germany after graduation the following year. Family who resided elsewhere often did not qualify for guardianship. Failing to get approval for Paul’s application, we requested that she, the judge, change the guardian.

To give some background information: once a legal guardian has been appointed, everyone, including family, lost all their rights and obligations towards the ward of court, including rights to information. Doctors could not, say, legally give us feedback about Klaus without the permission of the guardian. As an example, I wanted to find out exactly what kind of dementia Klaus had and other details about his illness. Until the day he died, he had no trouble recognising me or Paul, talking to me in English and the nurses in German, giving his opinion about issues. Still, he kept forgetting things, and when stressed or tired, became disoriented. But he retained his love for good food and enjoyed meals and trips outside.

However, the guardian required us to have explicit permission each time we took Klaus out. When Paul tried to enlist the help of a distant relative living in nearby Recklinghausen, the guardian dissuaded her from accepting the overture.

We met with the judge once, she emailed us once. After then, regardless of my attempts at further communication, we were unable to have another dialogue we had so fervently wished. My letters and emails went unanswered. We also visited her office but were unable to secure another appointment. Needless to say, this caused a great deal of frustration. I had wanted to show her the details of my own financial resources, in case she thought we were poor relations from a developing country, emerging out of the woodwork upon learning of a possible windfall from a sick and helpless old man. I also wanted to explain our Asian culture of caring for our sick and elderly.

Finally, the guardian and I reached a mutually satisfactory agreement. I became her private, fee-paying client so she could regularly update me regarding Klaus’ medical condition. (She claimed she received too little pay from the Court for too much work). This was visibly a conflict of interest, so I consulted a lawyer, disregarding the advice of most people--including Caritas, a Catholic social welfare organisation who took cases with the guardian, and German friends who warned me against challenging the courts.  By the time I found a bi-lingual family lawyer from a big law firm in Dusseldorf, my arrangement with the guardian had gone on for a number of months. Klaus, however, fearing retaliation, discouraged me from continuing with the lawyer’s services.

As it turned out, the lawyer had perhaps already done what I most wanted him to do, i.e., persuade the guardian to loosen her grip on us. After her brief telephone conversation with my lawyer, suddenly we could talk directly to any and all of Klaus’ doctors, take him out to any place to eat wherever and whenever we wanted, only notifying his caregiver/s. Although we had no say regarding his financial matters, we even had access to online information about his bank accounts!

Klaus was later forcibly transferred to an old people’s home. “Kidnapped” was the word he used. I guessed the authorities thought either that he was a hazard to the community--that, notwithstanding his caregiver, he could burn his flat perhaps, or possibly they thought they knew best what was good for him.  This was in spite of the fact that he was vehemently against it!

We tried to re-create his living room in his new quarters at the nursing home, transferring some of his books in similarly built shelves, his antique collection, his favourite furniture. In time, as he felt more settled there, Paul and I started to enjoy a period of stability. This, however, did not last long. Klaus was back in hospital soon, having fallen from his bed and fracturing his shoulder. It pained me to think of my own stupidity. His bed could easily have been adjusted to a safer height by simply stepping on the lever which controlled it, but I and everybody else had overlooked it.

Whilst in hospital, it was discovered that he had kidney failure, which required dialysis. For the longest time, Klaus had a history of hypertension. During his stay in the home, however, it became uncontrolled, possibly because he wasn’t taking his pills regularly. The home administrator explained that they placed his daily medication in his room but could not force him to take them as it would be illegal. Additionally, the home did not have a resident doctor and his family physician who should have visited regularly failed to do so. In the end, I did not know whether this resulted in his kidneys to fail or whether it was the kidney disease that led to his uncontrolled hypertension.

Klaus stayed in hospital for about two months. When he was suddenly released, I thought that was because he could have his regular dialysis and other treatments as outpatient. As it turned out, he died in the nursing home several days later.  I couldn't understand why.  The day before he died, he was still asking Paul how he was doing.  

This was in late spring--the flowers were abloom.  I was asking for one last summer.  My husband was looking forward to long drives with Paul and me, having delicious meals in the countryside, and basking under the sun.

I remained very angry.  How could the German state, reputedly the beacon of democracy and humanity, deny the basic rights of the family? How could it think it knew the needs of an individual better than their own family?  Don't Germans feel their personal freedoms are being stifled by the State as it intrudes into their personal lives? Or perhaps the State doesn't trust its own citizens and their love for their families!  

I asked the guardian these questions, her reply was: “But that is the law”! If that is indeed true, it seems to me there is a systemic problem that requires a systemic solution.

I still grapple with these issues and they haven't given me closure.


Miriam Durban Tagamolila

20.08.2020 01:22

The law should also be humane. What happened to Klaus was unfortunate.