„The last thing I would want is to appear as someone who thinks they have done many things exceptionally well. I did not want and do not want to give advice,“ Seyfert said in an interview with „FOCUS online“.
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However, she believes that such a book can help those who find themselves in a similar situation. Not because it provides solutions, but because it allows them to feel not alone.
„Maybe it would have been comforting to see: here, others also fall, and they find absurd moments, original solutions. Even if you recognize yourself only in the small details,“ she reflected.
Well-meaning advice sometimes becomes blows
Seyfert openly talks about how difficult it is for loved ones to accept the reactions of those around them. People want to comfort, but often say things that only hurt more.
One evening, completely exhausted, she cried on the phone to a neighbor. The next morning, the neighbor sent her a „WhatsApp“ message with a kind of „bullshit bingo“ – a set of phrases that relatives of patients hear again and again:
„It’s very important that sometimes you think about yourself too.“
„I am always here for you.“
„Have you tried removing the amalgam?“
„Heard a thousand times, bingo hit guaranteed,“ Seyfert said.
Since then, she really started playing such bingo in her mind – even in the shopping center. If someone said one of those phrases, she would mark a „point“ for herself.
„Of course, the bingo game itself does not improve the situation. But at that moment, a sense of relief appears,“ she said.
Laughter does not reduce the disease, but helps to endure
According to Seyfert, sick people are not stupid, so dark humor sometimes helps more than excessive pity.
She recalled a nurse who theatrically asked her husband: „Have you taken your pills yet?“ Marc did not like that tone. He disobeyed the „pill care“ and proudly bit into a cupcake – along with the paper liner.
„The fact that he ate the paper did not bother any of us. On the contrary – out of solidarity, we ate cupcakes with the liners all evening. It was wonderful,“ the woman recalled.
She emphasized: laughter does not make the disease smaller. But at least for a short time, it allows you to feel as if someone is holding you up.
The doctor who said: „Alzheimer’s? Bullshit“
The path to a good doctor for the family was not easy. One specialist had only ten minutes, another did not allow her to go into the office with her, a third asked why she even came if her husband was sick.
Then they met a neurologist who reacted simply to the diagnosis: „Alzheimer’s? Bullshit.“
„We stayed with him,“ Seyfert said.
This doctor became one of the most important supports. He spoke directly but humanely. At the very beginning, he told the woman a phrase that stuck with her for a long time.
„He said: now you need a glass of red wine every day and preferably a lover. And under no circumstances can you start thinking. From now on, thinking is forbidden,“ Seyfert recalled.
She says she immediately understood what the doctor meant. It was not a direct call to drink wine or look for a lover.
„The point was different. He wanted to tell me: don’t start moralizing and thus make your life even harder,“ the woman explained.
„Tell him I prescribed it“
The doctor’s support became especially important when Marc had to be moved to a nursing home. Seyfert did not know how to tell her husband about it.
„How should I tell him? Darling, the time has come, tomorrow you have to go to a nursing home?“ she recalled.
The doctor suggested a simple but very important solution for her: „Tell him I prescribed it. Then he will only be angry at me, not at you.“
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„Those words were like a fire blanket that covered me protectively,“ Seyfert said.
According to her, in Alzheimer’s disease, the doctor’s role is not only medical.
„There are diseases where it does not matter much what kind of doctor talks to you. In the case of Alzheimer’s, empathetic rhetoric makes up 95 percent of the doctor’s impact. The remaining 5 percent goes to good sleeping pills,“ she said.
A disease that takes away autonomy
Seyfert believes that Alzheimer’s disease is especially difficult for modern people because it strikes at what we value most – the sense of control.
„It does not attack the immune system, it does not attack the bone structure, it attacks human autonomy. And we, postmodern people, cannot cope with that,“ she said.
According to the woman, today people are used to measuring and controlling everything: steps, calories, blood pressure, sleep quality. But the disease showed her the opposite truth.
„We supposedly control everything. But in reality – nothing,“ Seyfert said.
Her husband, being a doctor himself, often repeated that a person cannot fully control whether they will get sick. When he himself got sick, this thought became flesh and blood for the woman.
„Marc was surrounded by family, he moved, was not overweight, worked an intellectual job, did not use drugs. And still got sick. So simple. And so hard,“ she said.
In the nursing home, the husband felt good
Moving her husband to a nursing home is called the hardest step of her life by Seyfert. She packed a suitcase with shirts that, as she realized, she would never wash again. She buttoned it as quietly as possible so that it „would not sound like a shot.“
But then something happened that she did not expect.
„My husband willingly stayed in the nursing home. Period. He was satisfied,“ she said.
The woman believes this happened because of the staff, who had what she calls „instinct competence.“
„One pudding for trust would have disappointed Marc because it would have been eaten too quickly. Five puddings meant: nothing will happen to you here, it will be according to your wishes, even if you can no longer express them,“ Seyfert said.
There were fewer rules in the nursing home than at home. If the patient lay down in someone else’s bed, they were not necessarily moved. If there was a urine puddle somewhere, the nurse could first finish the dance with the sick woman and only then clean her.
If the patient lay down in someone else’s bed, they were not necessarily moved. If there was a urine puddle somewhere, the nurse could first finish the dance with the sick woman and only then clean her.
„Five years ago, such a sight would have shocked me. But now I understood: he acted completely correctly. In a world where a person existentially loses the feeling of home, urine does not matter. It is ammonia. Nothing more,“ she said.
„Life says yes and no at the same time“
Marc spent only six weeks in the nursing home. He died unexpectedly – after an epileptic seizure and a heart attack. Seyfert calls this loss a „gaping chasm“ in the book.
But even here she talks about contradiction: pain and acceptance at the same time.
„Everything ended exactly where he came to meet me dancing until the very end. Where he got three, four, five puddings if he wanted them. Probably there is no better place to die,“ she said.
Seyfert does not hide that the loss brought loneliness, worries, grief. But at the same time, there remained lively, almost unbearably funny moments.
Once their fourteen-year-old daughter tore off a promotional letter addressed to her father: „Time for a new hearing aid.“ Her comment was brief: „Well, you are late here.“
„These are the moments when I could collapse with laughter. Moments of liveliness, lightness, truth,“ Katrin Seyfert said.
