Twelfe years ago, Helmut was diagnozed Alzheimer’s disease, an irreversable and steadily progressing form of dementia. Whatever workings Gisela has to do in their house, she consistently adresses her husband with her energetic voice thus provoking him to act somehow. "Helmut, next month we will go travelling!", she calls to him from the kitchen where she is preparing their breakfast. Helmut who keeps himself buisy with carefully drawing in a crossword puzzle’s boxes is all smiles and answers clearly: "Well, well. Then it’s about time to get the suitcase." After that he absently stares at the pen in his hand. He has already forgotten their conversation at all.
Such as Helmut around 1,6 Millions - mostly elderly people - are affected by Alzheimer’s disease in Germany. Worldwide approximately around 50 million people have dementia according to World Health Organization (WHO). And their number is growing steadily. Since Helmut got his medical report of dementia, the couple’s whole life has been touched by his disease. The first years with Alzheimer’s were still fine, they travelled a lot like they had always loved to do. At home and in their community they felt integrated as well meeting lots of people at different social events. But with the decline of Helmut’s cognitive abilities their circle of friends declined likewise to a circle of people concerned only with dementia in one way or another.
From the moment on Helmut completly lost his memory and could not articulate meaningful sentences anymore, Gisela started to feel haunted by isolation, something relatives and family caretakers are exposed to very often. Gisela interprets the whole situation as saying goodbye step by step over quite a long period of time. Something she feels is extremly painful and disturbing to her. There are moments she feels as lonely as someone being in solitary confinement. Neither has Helmut a consciousness of himself anymore nor does he recognize Gisela as his longterm wife and intimate companion. She is just a familiar person, a person that is always around him. A person that has to be at hand, that has to be available day and night. At some days Helmut visits the daily care in a special nursery home where he receives attention from skilled health workers. This is the only time Gisela is able to catch her breath. "The people concerned quiete often don’t even know their right to institutional support", Gisela brings up. Instead family caregivers are bound to stay in with their demented loved ones and kill time because they are ashamed to participate in public life with them.
Gisela feels hurt by the fact she and Helmut are frowned at recurrently by people at the supermarket or at the bakery store. An old aquaintance even asked her if it were still possible to shake hands with Helmut. This illustrates how clueless and insensitive the majority of the public, and a lot of professional caregivers as well, is about the self-conception and the needs demented people and their immediate family really have.
Thirty years ago people felt embarassed to talk about cancer in public, today this attitude seems to be repeated with dementia. Still Alzheimer’s is kind of stigmatised, maybe the more for the fact that theoretically everyone can be affected with it - even though in younger age. Overall one can notice: People are scared like hell to be affected by dementia. Michael Schmieder, one of the most influential dementia pioneers and ethical experts in Germany and Switzerland, wrote a book with the provocative title Demented, but not stupid (2015) which is well worth reading. Schmieder who formerly established and managed the internationally renowed nursing home Sonnweid in Switzerland that is specialized in taking care only of demented people, strongly advocates for more respect towards people affected with Alzheimer’s and other forms of dementia in society.
Paying attention to demented people’s dignity is his guiding principle when considering nursing and medical aspects. One of the main efforts in the future to undertake, speaking with Schmieder, should concentrate on freeing dementia from taboos and to raise awareness for this spreading illness. And never to forget that dementia is as individual in its forms of appearance as are the people who suffer from it. Only this attitude could be a solid fundament for developing sophisticated and effective supportive measures for the affected persons, caregivers and relatives.
In her self-help group led by one of the community’s former protestant priests Gisela feels comforted. There she can share her experiences and receive compassion, something she is in desperate need of since for many years she endures the emotional impact going along with caring for her demented husband. But Gisela is a tough woman, and despite feeling worn out quite often she refuses to turn her back on life’s more pleasant sides. She never left her weekly theater group, performing once a year in public. And every year she travels together with Helmut to Winterberg, a small town located in a low mountain range in midwestern Germany. One of the few hotels in Germany specialized in looking after family caregivers is situated in this holiday area. The Workers’ Welfare Association has realised the necessity to make an offer to family caregivers, who were not prepared at all to fulfill the part of a caring nurse when being in an elderly age themselves. They come to Winterberg with their demented partner or relative, most of them are very exhausted as Gisela is. She meets old friends from former stays while Helmut is looked for in the daytime care. Animals play an important part there because they have easily access to demented people’s emotions and do provide the feelings of security and comfort. By making the demented people feel good their caretakers get the chance to relax themselves.
"There is a lot that is lost due to this illness but nevertheless you get something back", Gisela summarizes. "By nursing your partner a new form of intimacy arises. It’s important always to be kind, never to scream at your partner and to always take him seriously. This is a balancing act beween infantilizing and absolutely essential support. No one is prepared for that, you have to learn it!"
This is an unshortened translation of the accompanying article I wrote for the daily newspaper Weserkurier/Bremen to go along with my reportage "Der lange Abschied/Farewell Sonata" (published in March 2017) about Helmut and Gisela Mückley. I first met them in autumn 2015. In Mai 2018 Helmut died of physical complications going along with Alzheimer’s. The urn with his ashes rests in their private garden making sure Gisela and Helmut still share some "physical space" together. And Gisela, now aged 81? Her courage to face life is unbroken. This autumn, she will go away on a trip to Vienna, Austria with her theater group, just by herself, after 63 years of travelling solely with Helmut.