Letter to the editor from Heike Beier: When death came to our home
Author
Heike Beier
No one likes to talk about death. It's even more distressing to talk about one's own death or that of a beloved partner. Precisely for this reason, and because many of our older members have requested that this topic be addressed in our journal in the future, I'm taking the courage to share my own painful experience with you.
At home, we often talked about death. Not just my husband with me, but also with the entire family and our closest friends. Whether discussing specific wishes for his funeral—it absolutely had to be a burial—or, in his own humorous way, the idea of leaving this life sooner than others, nothing was taboo, no one was spared. When my husband received the diagnosis of AAT ZZ in 1994 at the age of 37, with a life expectancy of a maximum of 10 years, our world initially collapsed. From then on, fear was my constant companion. Unlike me, my husband came to terms with his illness quite quickly and led a fulfilling life. Older members will still remember him as the chairman of Alpha1. With his optimistic and cheerful outlook, he was a support and source of comfort to me, and to many others, in difficult situations.
In the last weeks before his death, 21 years after his diagnosis, he spent more time in bed. A diabetic foot forced him to. Every time he got up, every small task caused pain and effort, which he endured without complaint. Unaware of the seriousness of the situation, we grew even closer, celebrating every small step forward, and cautiously making plans again. He even considered having his foot amputated so that the unavoidable periods of bed rest would finally end.
When death struck our home, I was out shopping with our grandson Elias. When we returned, my husband's brother was already waiting, but he wouldn't open the door. Elias was the first one inside and found his beloved grandfather slumped over and unconscious in the bathroom. Despite first aid administered by his brother and subsequently by paramedics, they were only able to restore his pulse. I asked to be taken to the hospital, where he died two hours later.
Today I regret this decision, especially since my husband had an advance directive that would have allowed me to discontinue the lengthy resuscitation efforts involving a tracheotomy and IV fluids, as cognitive impairment would have been inevitable. In this sudden, exceptional situation, I wanted to do everything I could to avoid losing my husband. To this day, it troubles me that I didn't let him fall asleep peacefully in his own bed at home or have his death officially pronounced. I so desperately wanted to hold his hand and share a very personal final moment with him.
My husband has now been dead for over three years. I miss him terribly, especially his humor and his easygoing way of dealing with difficult things. It's comforting that he remains present in conversations within our family. However, I also have to admit that life is often much simpler and more carefree for me. New doors have opened that I never would have imagined before. Spontaneity, independence, and free time for new and old interests now define my life, and I'm sure my husband would have shared in my joy.
Heike Beier
