Treat dementia patients: The stranger in my apartment
"It is forbidden to throw garbage out of the window - I wrote that down on paper, and I glued these labels to the windows and the balcony door, it did not help for a long time, at some point the neighbor came back and complained. 'That was not me,' my husband said, 'I have never thrown garbage in the yard.' And I yelled at him, he should collect this now, then I suddenly burst into tears.
I knew he could not help it because he was ill, but I just could not stand it anymore. Then we went into the yard and picked up the packages of the ice cream that he loved to eat, three family packs a day. He looked at me, a giant of a man, he was almost two meters tall, and said: 'I never want to do that again, I'm so sorry.' That was even worse for me than if he had denied everything. Because at that moment I could feel and see all his desperation. "
Angelika Fuls, 67, has looked after her husband Thomas for three years at home and six years in a home. He had dementia. He died in the summer of 2011. He was 65 years old.
Two-thirds of dementia patients are cared for by their relatives
About 1.4 million people with dementia live in Germany. 300,000 are added year after year. Two-thirds are cared for at home by their relatives. This means that at least 800,000 people take care of themselves, comfort, organize help and try to make life easier for those affected by their often agonizingly confusing lives. They are wives, husbands, unmarried partners, daughters, daughters-in-law, siblings, grandchildren who help around the clock or on a temporary basis. But who helps the helpers?
At the age of 56, Thomas Fuls is diagnosed with Alzheimer's disease and later "frontotemporal dementia", a form of the disease in which personality and social behavior change, and those affected become aggressive and tactless. A friend advises his wife to get information from the Alzheimer's Association. "I did that," says Angelika Fuls. "I also told everyone from the beginning that my husband had dementia, it was not always right for the kids, but it was easier for me, so no one thinks he has a quirk, but everyone knows he's sick."
But despite their openness, not everyone knows it. The policemen who have to stop Thomas Fuls from handling traffic on a busy intersection. Even the department store detective who caught him as he pocketed printer cartridges. The detective holds him to wait for the police. "If you touch Alzheimer's patients against their will, they feel so threatened that they are beating," says Angelika Fuls. "I'm sure my big man met the detective a couple of times, so the detective handcuffed him to a chair, and when I came to pick him up, Thomas had forgotten what had happened." Angelika Fuls learns it only at the trial of his defender. After a psychiatric report, he is acquitted, he would not have understood that he had done wrong, they say. "Then I can go without a subway ticket now, because I'm not capable of debt," says Thomas Fuls.
Many find answers in a support group
Angelika Fuls laughs. When the events are over, you can tell them as anecdotes, you are relieved that the pressure is temporarily gone, you want to forget the hopelessness for the moment, the despair also. And of course, a world in which the rules of reason and normalcy no longer apply, sometimes weird. Only when you're in the middle of it, you just can not stand it anymore. What will happen next? How can I live with a person who becomes more and more alien to me? How can I protect him from his own actions? And how, in spite of all that, preserve a bit of normality and lightness in my life? Ease - how strange is that? That's what Angelika Fuls asks herself. She finds answers in a self-help group.
Twice a month relatives of dementia sufferers meet in Berlin-Charlottenburg. The room is sober, there is no coffee, no cookies. It's not cozy, but it feels good. Sometimes there are eight people, sometimes only two. If you want to talk, you have the opportunity, who would rather just listen, too. Christa Matter, Managing Director of the Alzheimer's Association Berlin e.V. and psychologist, has moderated the group for 17 years. There are no topics for the discussions, it is also not rated what is right or wrong.
In the group are people who all have a relative, the partner, the mother, the mother-in-law, the father, the uncle or the grandmother.And all have similar questions as Angelika Fuls: Can you lock up an adult because you're afraid he'll run away when you go shopping for a while? What do you say to the husband who tells in the home that his four children are not of his and the woman who visits him every day is a slut? After all, is it not disrespectful for the confused mother, after the felt three thousandth question, when the grandson comes to answer no more? Angelika Fuls remembers that she lived eternally with a bad conscience. Only in the group did she learn that everyone is doing so. That helped her a lot.
"Here I can finally express the ambivalent feelings, and no one reproaches me, which is very relieving," says Jörg Müller. He, 55 years old, and his wife Christiane Schulz, 56 years old, joined the group for three years. Together, they looked after the mother of Christiane Schulz, first in their apartment, then in the home. The two have done everything together from the beginning. But they already had experience with caring because they had accompanied the cancerous father of Christiane Schulz to the death. "With my mother-in-law, I was able to handle a few things better," says Jörg Müller. "When I said we're going to change our pants, then it worked." When my wife said that, there was shouting and resistance, and the closeness between mother and daughter made things much more problematic. " And some sadder.
The feeling of togetherness is great
Christiane Schulz remembers how her mother got screaming in her last year. "Once she said, 'I do not want it to scream, it just screams on its own.' It hurt so much for them, it's often said that people with dementia do not know what's wrong with them, and in my experience, I do not believe that. "
The couple Müller-Schulz and Angelika Fuls met and became friends in the group ten years ago. Although their relatives have died in the meantime, they continue to meet privately, to dinner or to a glass of wine. Jörg Müller did not go to the group after the death of his mother-in-law, he needed a break. Christiane Schulz visited the meetings for a while.
"For months, you hear about the worries of others, although you do not know their relatives or only from a photo, you are touched when one comes to the home or dies." The feeling of belonging is great. " Angelika Fuls is now even the first chair of the Alzheimer's Society Berlin e. V.
Many fear the reactions when the patient calls in the park loudly in the help
The topic of dementia is less taboo today. It plays a role in films and books, magazines clarify it. But many are still ashamed to go public with their loved ones. They fear the reactions when the patient loudly calls for help in the park or when he unabashedly takes out the teeth in the restaurant after eating. Not everyone can handle such situations offensively. For all who do not want to hide their husband, their life partner, their mother and themselves, the Alzheimer's Association Berlin e. V. wrote a small card: "I ask for your understanding, my family member is demented (confused) and therefore behaves unusually."
Monika Berger (name changed by the editors), 58 years, has long considered whether she should join such a self-help group. Her partner S., 70 years old, has been diagnosed with Alzheimer's dementia almost one and a half years ago, she has been confused for some time. "We were on vacation, everything was fine, when S. suddenly said she had to go home now, the Monika was waiting for her, I answered that I was here, but S. looked at me and said, no, she said the other Monika. I then phoned S. on my cell phone and told her to stay on holiday, and S. told me that the other Monika gave her permission to leave. "
Monika Berger now knows that she will need support for the long journey with her friend's illness. But does she want to know today what else is going to happen to her? Do not such stories depress anymore? And does she really want to talk to strangers about private, intimate matters? She is not used to it.
On the first visit to the group Monika Berger listens only. Tips and information are exchanged: Who knows this drug? Who knows how to organize a day care? What can be done if the medical service rejects the level of care and thus the financial support? A family member tells a story about a new home, she will not need it for a long time, Monika Berger hopes.
The second visit overwhelms her because a woman tells of her husband's death. She swallows, she does not want to imagine that. Monika Berger stays away from the meeting for three months. That was a year ago. Since then, she joins the group almost regularly. "A wonderful side effect is that I can now go to the movies much more relaxed with friends or in a café," says Monika Berger. "I do not have the inner pressure to keep talking about my worries and I can get rid of them all in the group."
