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José’s Journey with MS and the Decision of Euthanasia: A Powerful Story of Hope, Strength, and Farewell

MS

José always keeps hope for a new treatment and she participates in experimental studies. She also ensures that she keeps her muscles flexible through rehabilitation therapy, should a drug suddenly come on the market. “She was very strong and optimistic on the one hand, but behind closed doors she could also be very sad and angry about her situation.”

At a certain point, José’s health deteriorates. “It was difficult to pee, she often had cystitis and when she went to the toilet only a few drops came out. When she got a catheter, she really hated it,” recalls Iris. Her father and mother also have a hoist in their home, because José is less and less mobile. “She found that really degrading,” says Iris. “My father had to help her with everything and she once said to me: if I have a fight with him and he walks out the door, I will hang here.” More and more often she shows that she has had enough. “We kept emphasizing what she could still do and then we simmered on for a while.”

Euthanasia

In the end, José can no longer cut her own flesh without dropping the knife, it frightens her that she will wake up one day and then, for example, can no longer speak. “Out of desperation, she then made a half-baked suicide attempt because she was afraid that her euthanasia request would not be approved.” José survives and wakes up in the hospital. She is angry with Iris and with her husband. “Can’t I go then? she then asked us irritably. I said: you can go, but not like this.” A psychological evaluation and physical check follows before José is approved for euthanasia. All in all, that takes three months and then she can set a date. “She wanted to do a few more fun things so when she got the approval she chose a date three weeks later,” Iris explains. They do little nice things with the family in the time they have left.

When the date for José’s death has been set, she continues and calls a funeral director herself to arrange her farewell. “Someone came by with a flower and box book, so she could choose everything herself,” Iris recalls. “Before the funeral she had recorded pieces of audio, addressed to her sister, my father, his family in Austria and to me. She delivered that on USB, the funeral director only had to talk everything together.”

The night before the euthanasia, Iris reads to her mother the funeral speech she wrote. “She was very curious and wanted to know what I would say.” The next day, Iris helps her mother with her hair and make-up. “She wanted to keep control herself, both at her death and at her funeral,” Iris laughs lovingly. “We played games and laughed that day. It was very surreal. We still had fun together and in a few hours she would be gone.” José dies on March 21 at just after four, surrounded by her husband, daughter and son-in-law. “She was very ready to die. She fell asleep peacefully with her favorite music in the background.”

Parting

José arranges presents and a farewell note for her family that they are not allowed to open until after her death. “My father got a new duvet cover for a fresh start with his new love and I got a music box for a future nursery.” José knows that Iris has a fervent wish for children at that moment and also leaves behind a letter that she can open when she has given birth. “It said: lots of love, from a very proud grandmother.” Barely a year after her death, Iris gives birth to her first child.

“I am now a mother of three and I recognize a lot of her in my own way of mothering. I also make a song out of everything and sometimes I hear myself talking and then that’s exactly what mom would have said”, Iris laughs through her tears. This year it is 10 years since José passed away and she misses her during the everyday things. “We called every day to chat about nothing. I often wonder what she would say about certain things now and there are so many milestones she should have reached.”

Surprise

It is not the only surprise José organizes for her death. It is Iris’s birthday three weeks after her mother’s death and there is a note that flowers have been delivered to the neighbors. When her boyfriend – now husband – picks them up and brings them in, she immediately knows that they come from her mother. “The bouquet could only be hers because it consisted of orange roses and purple irises, just like at her funeral. The card read, in her handwriting: see that I am always with you.”

In memory of José Schöszwender – van Kuijk 28-01-1956
21-03-2013.

Are you struggling with suicidal thoughts or worrying about someone else? Then talk about it. Call 0800-0113 (this is possible 24/7) or go to www.113.nl.

Do you also want to tell the story of you and your deceased loved one? Mail your name, age, telephone number and your story in a few sentences to [email protected] stating Monumentje.

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