Over the past year, André has been experiencing more pain and discomfort. “He was bleeding heavily, he did experimental treatments, but he got so sick. We got home care, a bed in the living room, I didn’t sleep anymore, I was tired and we ended up going from one crisis to another. The fuse got shorter and shorter, André was given a lot of medication and had untreatable pain. I experienced those last few months as hell. “
In the last stage, André goes to the hospice, when Jessica asked. “And with that, a burden was lifted from my shoulders. I couldn’t think anymore and I was too tired. I thought: let go. The last few days were beautiful. All was said and done and it was very peaceful. André was not afraid of death, but he loved life so much. That’s why it was so hard for him to go. He passed away on April 16, 2019.”
Dirty laundry
“I have often wondered during these four years: how do other people do this? Because it is a very difficult time mentally. When the corona crisis started, I got more peace and found out that there is not much information available for the partners of a sick person. And although many people are experiencing the same thing as me. Then I decided to write a book myself. A book in which other victims and professionals tell their stories and from which partners can get help.”
Jessica interviews 65 experts (with experience) about partner illness. “Of course, the focus is primarily on the sick person. Very few people ask their partner how they are doing. You’re always there for others, but it seems taboo to say it’s difficult. We don’t air dirty laundry about that.” Jessica chooses to go through therapy herself while her partner is ill. “I then had a 45-minute session with a psychiatrist and got permission to explain everything was a relief.”
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Stories that remain
The conversations Jessica has for her book prove to be healing for herself. “I was finally able to ask all the questions I had all the time. As a result, I came to peace with the situation, and I then understood why André continued to hold on to life for so long. I didn’t realize that before.”
In The partner all kinds of people telling their stories. Jessica cites several personal stories that have stayed with her. “I spoke to a woman who met a man IF he had young children. They were a dream couple in love, but because of her husband’s illness she became too much. She told me she felt like she was living in an intensive care unit. In the end, she asked him to perform euthanasia.”
“But also a woman who had Huntington’s disease – a brain disease. He was ill for thirteen years and died. But they loved each other very much and that’s why she continued to take care of him. She honestly admitted that it was a difficult time and that she no longer wanted a relationship. Partly because she was afraid of the traumas that would come up. ‘I can’t do it anymore,’ she told me.”
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Reptilian brain
Psychosocial therapist Jantine Dijkstra’s explanation is also very clear to Jessica. “She explained to me what happens to a sick person’s brain. We actually have three types of brains. Our ‘primeval brain’, also known as the reptilian brain, ensures that we eat, sleep, reproduce: come alive. Then we have our mammalian brain through which we experience emotions. And then there is the human brain that makes sure we can empathize and look after ourselves. If someone is very sick, has a lot of stress and is receiving certain medications, the human brain switches off (this also happens when you are drunk). Will you get even sicker and get more of these medications, like opiates? Then the reptilian brain eventually takes over everything. André was in that original brain, which meant he wanted to live. He couldn’t do anything else.”
Jessica explains that dying is a selfish process. “It is normal for a sick person to lie on his deathbed and not worry about others anymore. Such a person withdraws and can be egocentric, but so do animals. But in retrospect I wish I knew that. “
Crab
What was the most difficult thing for Jessica herself? “That was a number of things. First, life on sand. That you always get different news and ‘little time’. Additionally, I found the lack of power very frustrating. That I saw what André suffered.
But his mood swings were also very difficult for me. He could suddenly turn and say strong things to me. André was a happy, fun, smart and funny person, but the chemo and the medications made him collapse. In the end, he was no longer the man I was once married to. Although he was very sweet, his filter disappeared and sometimes he suddenly turned. And I could take less and less.”
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Taboo questions
Jessica also says that some relationships (fortunately not with her and André) are abused because of illness. “That is not discussed at all. But even in good relationships, illness can lead to abuse. For example, due to dementia. Partners may then become aggressive or no longer recognize their partner. But too much stress or fatigue can also put things on edge. There’s a big taboo about this, but I’ve certainly heard these stories.”
Jessica also talks about the topic of ‘intimacy’ in her book. Also a subject that ends when illness occurs. “Medication has a profound effect on intimacy. Not only with cancer, but also with other medications that are commonly used – such as antidepressants, cholesterol-lowering agents, blood thinners or the pill. Taking such medication can lead to impotence, loss of libido or dryness of the vagina. If you are not aware of this, you can start doubting yourself. “
By the way, it is not only medicine that must affect the intimacy of the relationship. “Certain activities, how attractive the sick person is to themselves or their partner, or shame also affects intimacy. Sometimes you want to be intimate, but your body can’t handle it. Or as a partner you are just tired. These are really difficult things.”
take care of yourself
In her book, Jessica provides all kinds of tools for dealing with a sick partner. She makes two points that she believes are very important. “One of them is that you have to take good care of yourself and make time for yourself. That’s something all the professionals told me too. The healthy partner often goes so far in care that he or she dies. Especially with a long illness. That’s why it’s important to be willing to ask for help in your environment. Partners give up their hobbies or free time for the other person, but it is important that they take time for themselves and relax.”
Jessica talks about respite homes in the Netherlands, which aim to provide relief to informal carers. “In retrospect, that would have been very good for us. “
But there is one more important point that Jessica wants to make. “Be aware of the trap of continuous manipulation. It is good to talk, perhaps with a professional, about the effects of continued treatment. The doctor is often focused on trying everything possible, but as a couple or family you also need to think critically about this.” Jessica emphasizes that this can work both ways. in a relationship. That a person is sick to continue treatment based on the ‘reptilian brain’ or that a partner is holding on to it.
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A new love
According to Jessica, another big taboo is making a partner sick. “But someone only leaves someone sick if he or she is in danger of dying from it. With personality changes, for example with severe brain damage, it can be very difficult to maintain a relationship. You can get another partner back, for example after an accident or a stroke. If you are young, this may change your entire future. Sometimes leaving is the humane choice. But you often get a lot of junk from the outside world.”
And new love? These can also happen after the death or illness of a partner. “How you deal with it is entirely up to you. It took me four years to open up to love again. You decide how long that takes. Sometimes a new partner comes while someone else is still alive, that is indeed possible. You have to treat this with respect, but you don’t have to be responsible for it. It’s your life and your choice. Everyone deserves the joy of love.”
Vote partner
Jessica herself is doing well. Writing her book gave her peace of mind and she enjoys helping others. “I started a new relationship last year.” She hopes her book will highlight all aspects of caring for a sick partner. “That can be very difficult. And while impending death may lead to a deeper connection, I also want to give voice to the silent, invisible, healthy partner. As an outsider you don’t know what is going on at home. “
The book The Partner is available now. “It’s an intense book, but the common thread is love. Love gives you strength. If you said beforehand that I could handle all this, I would have laughed at you. But as a man you can do it. “
2024-05-11 07:02:27
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