11(a) Life issues:
Relationships, Control, Children, Carers
An end to equality, an immediate change in relationships
Perhaps the most extraordinary first impact of a diagnosis of life-threatening illness is the way it alters relationships. Every presumption about the future that the sufferer or those with whom he or she lives or works, is altered immediately, especially the notion of ‘equality’... you can’t share a brain tumour.
How people respond to this social impact varies greatly. There is a tragic incidence of relationship breakdown as a consequence of such diagnosis... not only where a partner is diagnosed but also where there is a child diagnosed.
It is important to be aware of this social dimension. Again individual and cultural difference mean there can be no one response to it. In settled relationships much can increasingly be taken for granted. In relationships threatened by life-threatening diagnosis, it may be of value to try to avoid assumptions about each other and to try to be as clear as possible about feelings and concerns — with a focus on positive mutual support. Even saying “I don’t know how to deal with this” or “I feel very threatened by this” is itself a valuable recognition of the difficulty of dealing with the problem alone.
The person with the brain tumour needs to have a sense of control
When you get to read this, you will no doubt already have experienced the stunned mullet situation of being in the doctor’s office while the diagnosis is presented and the treatment ahead is outlined. No circumstance in life can make a person feel more loss of control, suddenly dependent.
In the wake of diagnosis, each of us and any number of friends will search for explanations of “why has this happened?” and ask “what is to be done?” You soon know who watches which current affairs program, who reads what magazines, as the opinions on mobile phones, new treatments and good diets flood in.
It is quite likely that in the course of dealing with the illness, the person with the brain tumour and family will not have identical views on what is the most appropriate treatment decision at whatever time. It becomes very important to sort out how this kind of issue is addressed.
As a first principle, the person with the brain tumour is the person who has the right to decide. Thus, that person needs to know facts and issues to make decisions, unless the decision is to leave the treatment path for the doctors’ decisions. There will, nonetheless, be times when doctors will ask what choice is to be made. Being well informed about context helps then.
It seems important that family members, in seeking to inform themselves, work out how to think through the issues and be prepared to discuss the issues in a way which leaves judgement for the person with the brain tumour. Compare and contrast: “Dad, I read something you may find interesting” versus “Dad, here’s the answer!”
Within families, it goes without saying that everything tends to have emotional weight. Often a parent will feel “I should do this because they want me to do it.” It may be important to reassure a parent (or partner, etc.) that they have freedom to make their own decision, using their own judgement. Language of reassurance is valuable. Consider the difference between “Oh Mum, I’m so upset and worried about you!” versus “Mum, you know I love you and I just want to say I’m glad you brought me up to be confident enough to deal with this now.”
However your family may work, assume this is a new ball game, needing reworking.
You also have to assume that relations, friends and work colleagues may act in often unexpected ways. Some will unexpectedly become gems. Some will run away, unable to deal with the situation, or feel threatened by it. You can spend a lot of time getting poison into your own system by being upset or angered by the reactions of others... or you can recognise that that’s life, people are who they are, their problems are their problems, you have enough to deal with without getting worked up about them.
Time is very precious in this new world of threatening diagnosis, you can choose to bitch or choose to make the most of it. We have freedom to decide where to place ourselves, what to focus on...
... Or we have such freedom as adults. We need to have special regard for the support needed by children, who have less freedom and mature sense of what is happening. Children can, in stress, reach terrible misunderstandings of situations which are threatening and unclear. They may develop guilt or sense of blame, or may direct blame at someone. For the sake of children, if not for ourselves, focusing on the good in the day, making the most of the possible, rather than focusing on the negative, may be of resounding long term benefit.
It is hard to work out the balance in dealing with the children in a time of crisis. Leave them entirely ‘insulated’ from what is going on when they know something very upsetting is going on and they may be more alarmed and also alienated. Drawing them into the issues requires a very careful sense of what they can understand, what they can think about, what does not confuse or become too great a burden.
Much depends on the prior situation and the ability to provide underpinning sense of security. It is not uncommon for young children to feel something is their fault if there is tension in the home, if they are getting less or different attention. Keep them assured and in a circle of assurance and love.
Impacts of the brain tumour on cognitive function and emotional states
It is reasonable if often difficult to accept that a brain tumour and treatments to deal with it may impact on the ability to think realistically and on emotional states. In some cases there can be shifts of personality. In any case, anything thought or felt will be thought or felt in stress by a person with a brain tumour. As a general rule, this makes it wise to consider contingency planning, thinking ahead about issues, questions and things to be done. Start with the fundamental point that there a whole lot of things that well people should do but fail to do – like wills and funeral wishes, etc – and get on with them. It can be very hard to open the discussion, but it may be that the other party is feeling just as anxious to talk, unable to start the discussion either. Progression (my, what a euphemism) – meaning the tumour gets worse, has more effects – tends not to happen gently but with sudden shifts. Consider the way mass effect works by considering putting more and more pianos on the floor upstairs.
The carer needs care too
The word ‘carer’ may cover a partner, a parent or both parents or more, or a child or children – or other close supporter of a sufferer.
It is important to recognise that there is a great impact on carers. Some carers self-neglect and do not feel they have a right to support or indeed, perhaps, survival. "Only one of us can afford to be sick at a time..." now there's a recipe for disaster. Carers often do not feel they have a right to articulate their problems and have support. This can expose the carer to stresses at social, psychological and physiological levels and also in work and the workplace. It can also mean a drift to lack of sensitivity on the part of those around the carer: "Good old mum, isn't she magnificent." Failure to recognise this, failure to support the carer, can hazard care for the person with the brain tumour as well as long term survival for the carer.
... Another matter for explicit discussion.