Family support for brain injury

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On behalf of Hersenletsel-uitleg we asked Inge Oud a number of questions to give an idea of what a "partner / relationship counselor" can mean for the partners and children of someone with brain injury. We also asked questions about what such a counselor can do for the relationship of the person with brain injury and his or her partner.

Please note! The page contains information about reimbursement by health insurers. It is information that relates to the situation in the Netherlands. This may be different in other countries.

You started your own practice. Can you tell us something about your education and career so far?

In 1994 I completed my HBO Social Services at the University of Applied Sciences in Utrecht. At that time I was doing an internship at the day treatment at the Rehabilitation Centre De Hoogstraat and felt like a fish in water. There was no specialisation at that time. I saw people with all kinds of injuries and also their families.

When I received my diploma, I was immediately able to do a six-month temporary job at this rehabilitation centre. During this time I increasingly saw people with neurological disorders.
After this temporary period I got temporary work at the Rehabilitation Centre Leiden and at the rehabilitation centre De Maartenskliniek in Nijmegen. In both centres I supervised people with neurological disorders and their partners. That's how I got involved. I gained more and more experience.

After this temporary period as a rehabilitation social worker, I got a permanent job as a medical social worker at the Spaarne Hospital, which was in Haarlem at the time.

I worked in an internal department, so I saw many oncology patients and their families. Through the IKA (Integrated Cancer Center), I did a very good training: ‘Psychosocial Interventions in Oncology’.
Since I also worked in the maternity ward, and was called in if something went wrong during or after the birth, I started the course: ‘Care after Traumatic Events’.

Later: ‘Sexological Training’, ‘Creative techniques in couple and family therapy’, ‘Burn-Out, a holistic approach’, and ‘EMDR’ came in handy. In 2011 I obtained the HBO diploma: ‘Medische Basiskennis voor Hulpverleners’ (Medical Basic Knowledge for Care Providers).

At the time, the Heliomare rehabilitation center also had a branch in the Spaarne Hospital. I was in the “Chronic Back Pain Rehabilitation Team” through them and did this in addition to my other work. People learn how to deal with and gain insight into their pain complaints.

Tell us about your passion for this profession and where it comes from!

What is the most valuable thing about your profession?

I continued to be drawn to rehabilitation. I enjoyed, and still enjoy, working with a whole system, the patient, their partner and the whole family. You cannot separate one from the other. You form a system. In my opinion, this systemic work is powerful and necessary. When a job became available in the Hoogstraat, I was asked to apply. I thought that was an honour! It was a job in neurology, day treatment. I kept this job for ten years.

During my work in rehabilitation, I noticed that once the ‘patient’ with brain damage is back home, there is little suitable guidance for the partner and the relationship. Extensive knowledge of the consequences of brain damage is really needed to be able to provide good partner and relationship guidance.

For example, if someone has become more self-centered because the brain area from which social behavior originates is damaged, you should not give that person the advice: ‘You could take more account of your partner.’ He/she is simply no longer able to do so because of the damage. In that case, it makes more sense to inform the partner about this (psycho-education) and to provide tools to deal with this ‘more self-centered behavior’ of the affected partner.

Research
Anne Visser-Meily

PhD research: ‘Caregivers, partners in CVA rehabilitation’ (2005)

This research shows that children of a parent with NAH are more focused on the healthy parent. If the healthy parent (so not the parent with NAH) does not make it due to stress, for example, and there is too little attention for this, then children are more likely to develop mood and behavioural problems later in life. It is therefore doubly important to have a good picture of partners, to keep them there and to guide them, especially after rehabilitation. These research results are still relevant!!

Time and again I saw partners as voices crying in the wilderness. I then decided to fill this ‘gap’ by starting my own practice with partner and relationship counselling for NAH. It is important to map out the carrying capacity of a partner. This is often the linchpin. The greater the behavioural changes and cognitive limitations of the person with NAH, the more it takes its toll on the partner. If this partner cannot cope, the entire family cannot cope.

I have guided many partners and that continues! When I see how they eventually leave my practice: full of courage, with renewed energy, many insights richer and very grateful, then I am always glad that I took the step to start this practice. It is meaningful, it connects. Partners sometimes have to go through quite a search before they end up with me.

Is it a tough job and how do you make it easier for yourself?
Is it a tough job? Sometimes it is. People often have entire medical circuits behind them when they come to me. I always tell myself: “What happened to these people, I can’t do anything about that, I can help make their lives a little easier”. Keeping the focus on that ensures that you can continue to do this work.

We understand that people can also request a conversation with you via video calling. That is really making use of modern developments and a huge helping hand to people who cannot travel far. Is it being used?
During the Corona period, I did a lot of telephone consultations. That was not an obstacle. I have also guided people from Brabant and Limburg by telephone. People can of course just come to my practice. Face to face is the most pleasant for relationship guidance.
Partner guidance can be done very well online. So it does not matter where someone lives, guidance is always possible!

Are the conversations reimbursed by a health insurer?
The conversations are reimbursed by most major insurance companies, provided that one has additional insurance. I have an up-to-date list of insurance companies that reimburse each year. It is best for people to call or email me in advance to ask whether their insurance will reimburse.

We know you provide support to partners of people with brain injuries. We also hear a lot of calls for relationship support conversations. Do you do that too?

Yes, indeed! As I have on my car: “Partner and relationship counseling for NAH”. The condition is that the partner with NAH is capable of a certain degree of self-reflection. Otherwise my advice will not be received. At the moment I do a lot of relationship counseling.

A 63-year-old man came to me for an intake. He worked for an American company, worked hard and had to fly a lot for his work. He said: "Sometimes in the evening I didn't remember which plane I had boarded in the morning, and where." When I had the stroke, the scales seemed to fall from my eyes. What had I been doing all that time! I went through life unconsciously, rushing from one appointment to the next. I didn't want this anymore. There are so many things to enjoy, to enjoy together." While he said this, he looked at his wife. "I want to enjoy my life. This is no life. My resilience has decreased, I will have to take that into account, but I can do that just fine. I look at what I can still do." He decided to quit his job and finally start living.

A couple came to me for therapy. They had separated six months earlier. He was living in a small room in the city. When he had a brain hemorrhage, his wife decided to take care of him. She said: "This is the man I fell in love with back then. He is warm, has an eye for others again, goes to the children's sports matches. The injury seems to have softened him. Before that he had blinkers on, was hard and had no time for anyone or anything". The couple decided to pick up the thread again and get back together. Their marriage blossomed.

I also coach other family members. My opinion that the needs of children with a parent with brain injury should be mapped out is supported by research. My newsletter: “Children of a parent with NAH” explains this.
https://www.praktijkingeoud.nl/wp-content/uploads/2017/11/Nieuwsbrief-oktober-2017.pdf
In 2020, my practice celebrated its tenth anniversary and I had 26 years of experience in partner and relationship counseling for brain injury. I hope to add many more years to that!

Care Giver Strain Index

I list a number of things that can occur in people in a similar situation to yours.
See if the following applies to you:

My sleep is disturbed.
Helping him or her takes quite some effort and time.
I find it physically hard.
It limits me in other things I want to do.
We have had to adjust our daily routine.
We have had to change our plans.
There are also other things I have to spend my time on.
Emotionally, we behave differently towards each other.
My husband/wife's behavior sometimes upsets me.
It is painful to have to see that he/she has become a different person.
I have had to adjust my work/job to the situation.
I am completely absorbed in this situation.
We live under financial pressure.

In case of 7 or more “Yes”: you are at risk of becoming overloaded or are already overloaded.

Then search for support!

For example see the following websites: