Ingrid Venner and Mark living apart after Parkinson’s diagnosis, Digi Mart USA News: The Netherlands has 5.5 million informal caregivers. What does it do to a person when that responsibility suddenly rests on their shoulders, and how can someone shape that care without losing sight of themselves?
The second part of a series on informal care on Villa VdB asks how you cope when your partner falls ill and you become both lover and caregiver.
Ingrid Venner and her husband Mark chose to live apart after Mark was diagnosed with Parkinson’s disease. Mark and Ingrid met when they were 36 years old in Oman, and it clicked immediately.
They had a loving relationship in which they complemented each other, traveled widely, and lived abroad.
When Mark retired early, Ingrid noticed small changes in his behavior: “I saw him walking and increasingly thought: I see an old man.” In hindsight, these were small symptoms of the diagnosis they received in 2020: Parkinson’s disease. “It was a blow for him, his brain was the most important thing in life,” Venner says.
The diagnosis brought a great deal of shame and discomfort.
The connection that existed at their first meeting changed under the strain of illness. “I am someone who takes action, and he suddenly wanted nothing anymore.
He sat on the couch waiting for it to pass, but the illness does not pass,” Venner says. Joey Steur of Praktijk de Liefde notes that roles often shift gradually: one person cares while the other needs care, which affects equality in the relationship.
Mark wanted to prevent this and did not want Ingrid to become his caregiver. “He felt that wasn’t right.
He said: you are husband and wife, not each other’s caretaker,” Venner says. To keep those roles separate, she made the painful decision to live apart from her husband.
“He stopped wanting to meet people and became a recluse,” she recalls, and friction and discomfort grew. She proposed living apart for a year and then reassessing their relationship.
“At times it was very painful, but on the other hand it was very warm,” Venner says. “You can really be there for someone.
You don’t look from ‘I have to care,’ but from love.” Steur advises partners to make room for the relationship in whatever form it takes, noting that one does not have to carry all the care to be a loving partner, and to keep talking about what the illness does and what one misses and longs for.
Mark ultimately chose euthanasia. “Just before he died, Mark thanked me for living apart.
He said it gave him peace. And he said I should enjoy life,” Venner says.
Looking back, she treasured the moments they shared precisely because they lived apart, such as eating an ice cream together or taking a walk.
