About brain injury

Irene: I step into her room and on the edge of the bed sits a 53-year-old woman. She is divorced and the mother of three children. "Hello, I'm Liesbeth," she says with a laugh. She indicates that she has had surgery for a brain tumor and that her memory is poor. What she can tell she has heard from those around her.

Burnout
After a number of years of good performance, she was fired in 2013 from her employer, a bailiff. Her functioning had deteriorated over time and she overslept every day.

The GP diagnosed a burnout and referred her to the psychiatrist in connection with complaints of depression, apathy and concentration problems.

Gradually, she stopped opening her mail and did not pay her bills. She no longer maintained contact with friends and stayed in bed. She had difficulty tolerating stimuli and, according to her family, was grumpy and rude in her dealings. She didn't take care of herself, didn't keep up with her household, hardly ate and didn't do any shopping. She was diagnosed with schizotypal personality disorder and was prescribed a high dose of antipsychotic in connection with her tendency to psychoses.

Assisted living
In 2014, she was about to be evicted from her home with her children due to a considerable rent arrears. Her mother called in the help of social work. She arranged home care and she was placed under administration, which prevented eviction and made arrangements with creditors.

Her sister became her mentor and was in the process of applying for a WLZ indication for assisted living. Her memory impairment seemed to be increasing, and they complained of loss of taste and smell. She was disoriented in time and place, gave few adequate answers and laughed everything away.

Tumour
The fact that the cause of her complaints was sought for a long time on the psychological level had serious consequences. Psychological and psychiatric treatments had no effect whatsoever and over the years dementia and Parkinson's disease were thought to be. An MRI was not made until February 2019. This showed a large brain tumor. This so-called meningioma turned out to be benign and not hereditary. Because it was completely encapsulated in the meninges, it could be completely removed surgically. After the operation, she was less apathetic and showed more initiative, but was impulsive and easily overstimulated, which allowed her to react agitatedly.

Cognitive NeuroRehabilitation (CNR)
It is three weeks after the operation when Liesbeth is admitted to Thebe Aeneas in Breda for CNR. She is independent in terms of mobility and toileting. She appears to have no memories of the past few years and thinks that her children still live at home. Her short-term memory is still disturbed, for which she uses an agenda. She herself indicates that she also has memories from the second day after the operation.

Grieving process
Liesbeth: Through the stories of my family, I gradually found out how badly I had deteriorated in previous years. That was very strange for me, because I didn't remember anything about it. I then noticed that my memory was a gaping hole. I had lost at least 12 years. For example, I don't remember anything about my father's death and about my children growing up. I had to ask my daughter how old she was. That realization brought me into a grieving process. And strange but true: that sadness also felt like a plus, because it made me realize that I could now have feelings again: both happy and sad.

My transfer to Thebes Aeneas
I was assigned my own room there. The treatment plan was drawn up in consultation with me. I thought that was a good guideline and real tailor-made care: it gave me something to hold on to and insight into my progress. What I have experienced as very positive is that Thebes Aeneas has the view that you should do what you can do yourself. The nurses will not easily take something off your hands if it is not really necessary. That is not always easy, but it is an excellent incentive. For example, I thought it was great that you can prepare elevenhot meals there, which are then consumed in the communal kitchen together with the fellow residents. That was very pleasant and it was also a form of rehabilitation for all of us in social interaction with each other. The nursing staff always guide and encourage you in a very positive way in such activities.

I have had a lot of support from conversations with the psychologist and spiritual caregiver. They listened carefully and gave me good targeted feedback and insight into myself. I could move forward there. Working on my physical condition was tough. After years of hanging apathetically in my easy chair, I hardly had any condition and muscle strength left. So the road back was long and hard.

Behavioral change
The tumor was mainly pressing against my pituitary gland and optic nerve. As a result, I found it difficult to feel my boundaries and to impose limitations on myself. In the best case, it gave me great fits of laughter. But sometimes I was quite tired and could not stand the stimuli of my environment. Because I received clear signals from my environment that I reacted very unkindly to this, I consciously started working on it.

Dismissal home
After a (relatively short) stay of four and a half months, I was allowed to return to my own home. Fortunately, I was also well guided by the social worker in going home. Upon returning home, guidance was started by the organization Professionals in ABI. And since then, my physical progress has been guided twice a week by physiotherapists, who also have knowledge of ABI.

Gradual further recovery
My short-term memory is working better and better. And my long-term memory is also getting better and better. Typical example is that I suddenly know the melodies and lyrics of all kinds of songs again. But I am also starting to remember more and more about other things. And new memories seem to stick better and better. Although my neurosurgeon didn't really think that was possible, my smell and taste are slowly but surely coming back. And last but not least: I can deal with stimuli better and better. The people around me usually find me pleasant to deal with again.

The 'old' Liesbeth
I seem to be the old Liesbeth again, the one from before the tumor ... at least.. Almost. Because a person changes irrevocably when he or she has to make me what I have experienced. My mother describes it as follows: I now know three Liesbeths: there was a Liesbeth before the tumor, there was a Liesbeth in the years that the tumor affected her, and there is a Liesbeth after the tumor. But whatever it may be, I feel like I've been given a second life and I really want to make something beautiful out of it."