Talking about illness in the family

Billy was involved with the Lambeth family as part of a home care team. While the nurse was concentrating on Joseph’s symptoms, she had realised that his wife Annie needed support, and asked Billy to intervene. Annie was caring for a very sick husband and was trying to keep three children going—an 11-year-old boy suffering from asthma, a 10-year-old girl who had threatened to leave home, and a 7-year-old son. There was little extended family support and a lot of family conflict seemed to hinge on the illness.

When I phoned Annie she welcomed help but insisted that the children should not be told that dad had cancer. ‘The only thing I have managed to do is not to tell the children and I never cry in front of them’ she said. I suggested that we have a family meeting and we agreed a time for me to come with the nurse who had made the initial visit.

When we knocked on the door, Annie opened and said ‘Joseph isn’t well, he’s in bed.’ She looked exhausted. Thinking on my feet, I felt that the family needed to confront some of the issues together and said ‘Is there any chance that you could go up and ask Joseph if he could come and join us, even for a little while?’ She went to the sitting room with the nurse and then Joseph appeared and they came in and all sat down.

I started off by: ‘It’s good to meet everyone. We know from the work we do that when one person is ill in the family, it does affect everybody and we were just wondering what it was like for all of you’. Then there was this huge silence and absolutely nothing was said for a long while. Eventually the youngest blurted out ‘I hear Dad getting sick at night and I get upset.’

The outcome of that first family meeting was that we were talking to each one about how the illness affected them and what their thoughts were. The parents agreed that I met with the children separately for a few occasions, and the nurse would focus on the symptom control with Dad. The nurse and I would meet with the parents from time to time.

Annie was worried about the children being upset and Billy felt it was critical that the team had the parents’ support for the work he was doing with the children. He was trying to palliate the ignorance and fear in this household and he wanted to address the feelings and enhance communication in the family. He met the children four times, making use of an activity such as drawing, sculpting, or completing sentences in order to draw out the discussion. They explored beliefs and myths about the illness such as ‘Cancer isn’t catching’,

‘There’s nothing you said or did or didn’t do that gave Dad cancer’, or ‘You can’t get ill because you’re bad’. Through the sessions with the children, more and more hopes and fears emerged:

The youngest drew a sketch of each person of the family with huge tears dripping down Mum’s cheeks. Even though it wasn’t talked about openly, the children were aware. I tried to convey that it was acceptable to feel that the whole world revolved around Dad’s illness and that they were never taken out any more; that they could still laugh and go on an outing and at other times be really scared and crying.

Billy helped the children to mention the unmentionable; he put into words some of the things that were going on. Expressing what they were feeling and thinking and being given permission to be the way they were was healing.

By Billy’s third session with the Lambeth children there had been a lot of progress: the rows and the threats from the ten-year-old girl had diminished, the asthma attacks were under control, cancer was on the agenda, and they were talking about Dad dying. Given that the children were extremely bright and insightful, Billy felt they were in a way parenting their mother. Annie could barely cope. She was hyper-anxious and always busy. Billy wanted to help her be a mother again and allow the children just to be children.

By the third or fourth session I said to the children ‘You know, I wonder how it’s going to be when Dad dies. How do you think Mum will be?’ The two youngest ones said ‘Oh Mum will commit suicide’. This really shocked me. I wasn’t expecting that response. I didn’t even know they knew the word suicide. I was almost tongue-tied.

It transpired that there was a lot of mystery around grandfather’s death, Mum’s dad. It sounded as though he had died in the Holocaust, and one of the family secrets was that Granddad had committed suicide. That was how the children had picked up this word.

The children’s worry about who was going to look after them threw Billy off balance and he wondered how to take this further. He had this contract with the children that what they did together was confidential. But trying to keep the parents engaged and to work through them, he also had this agreement that when he met the parents he would talk generally about the kind of work he was doing with the children. His supervisor suggested he called another family meeting and enabled the parents to say to the children what arrangements they had made.

We had a very emotive, sad meeting acknowledging that Dad was going to die and facing the fact that the children were worrying about Mummy dying as well. The parents handled it very well and said what arrangements were made if the children needed caring for.

Out of that meeting, we were talking about how to best use the time they had, together as a family. One of Dad’s big regrets was that having been ill ever since the seven-year-old was small; they had missed out on getting to know each other. He would love to have time to tell him stories. We gathered suggestions as to what the family might do to help Dad and his youngest son to get to know each other. Mum and the two other children agreed that they would make a space for Dad and Christopher to spend time together.

On my last meeting with Dad he said ‘It has been the best morning of my life, I had such a lovely cuddle with Christopher and it was just right’.

Families do what they feel they need to do in terms of sorries, thank yous and goodbyes in their own particular way, but in terms of helping parents be parents, Billy and the home care team’s intervention enabled Joseph to retain or reclaim control when everything was out of control. Empowered to identify his needs and to feel that he could be a dad, Joseph could have, in bed, this wonderful morning with Christopher with the backing of his family.

Billy carried on working with the Lambeth family for a few months following Joseph’s death. It was not a happy family. The rows went on. The girl had been the apple of her dad’s eye, and she was absolutely hateful to her mother after his death. Billy helped them look at their relationships with each other and asked what, if they could have a magic wand, they would change.

One key thing was the ten-year-old girl. Something was troubling her, her anger was not standing on its own, it was rooted in something. We did a bit of writing with the heading ‘If only... I wish we did or did not do something' She wrote ‘I wish I had a time machine and could go back in time’ and ‘I wish I had made Dad go to the doctor, I might have stopped his cancer.’ We talked about her feeling responsible for Dad, who was having back pains and wouldn’t go to the doctor, and she wished she had forced him. She ended her piece of writing by saying ‘But even then, I don’t know if it would have stopped the cancer’, bringing in a bit of reality.

It often happens that children feel responsible for their parent’s illness or dying. Billy allowed these difficult questions and guilt feelings to surface and helped them to understand their meaning. In the first contact Annie had expressed her belief that a good mother should hide the father’s illness and her own distress from the children. Sometimes beliefs can be on the edge of awareness or unconscious and it can take time and creativity on the part of the therapist to help them to surface, as Billy did with the Lambeth children’s beliefs about illness and cancer.

Chloe, a nurse and family therapist in training, at times felt completely helpless when working with Laura and Pete. Retrospectively she realised that some of the things she did were helpful. Laura’s brain tumour diagnosis came about when she was thirty-one weeks pregnant and had a fit. The doctors knew they would need to start radiotherapy immediately and they had to have her baby delivered. The baby was small and went into special care, when Laura was just coming round to the whole idea of having a life-threatening illness. The staff nurse had realised that Laura’s husband Pete was struggling and called Chloe in.

Pete was very diffident about my being involved because by the time Laura came home from hospital they were having a number of professionals coming in and out of the house. I met them for the first time when Laura was getting over the effects of radiotherapy. She was on high dose steroids, had put on a lot of weight and physically was looking very different from how she had been some time before. Pete was trying to manage a sickly and frail baby as well as a toddler. He was doing a lot of physical work and taking a great deal of responsibility for looking after the whole family.

We had several sessions talking about the impact of illness on their life. A bone of contention between them was that Laura was relying on her mother to do quite a lot of supportive work and Pete was feeling excluded from this. There were issues about how they were functioning as a couple, as they tried to adjust to the illness. I was getting stuck with these two very different points of view, which they were giving me but not sharing together. Laura would tell me her story and Pete would tell me his version of what life was like and they were not engaging at all.

I asked them to draw a circle that represented their life and to put different circles into it representing all the things that were important. That might be the people, it might be things that fed their soul, it might be anything; and to put in illness, and also what was happening from a physical point of view. I also invited them to make sure that they put themselves in there. What was fascinating was that the biggest circle in both their drawings was around the disease, but Laura described it as, ‘Getting better' and Pete as, ‘Illness.’ It became very clear when they looked at each other’s drawing that they had no common language for talking about what was going on. Laura had put in her circles her husband, Pete, her two children, and her mum, but her mum was bigger than her husband. Pete had put his wife and his two girls in the drawing, but he refused to put himself in because he said, ‘I don’t exist’. The drawing was a very powerful way for them to be able to look and see what was similar or what was different and how we could try and help them to share more.

They had been describing about their life before as a very cohesive, loving, demonstrative couple and the illness had completely changed everything. They had been preparing for a second glorious child and instead they had illness and the extra child was almost an additional burden rather than a joy, although that was not ever made explicit. The tension between Laura and Pete, the sadness and the rift between them, was almost palpable. Laura had very little physical energy, but when she did have some it was expended on the children, especially the older child, and on her mother in phone calls. Pete didn’t mind the lack of energy and the priorities that ensued, but he was feeling excluded. He believed that when you get married you are responsible for each other and you separate from your family of origin. Their different belief systems were causing friction and it was sad and difficult. Pete had been told information about Laura’s long-term outlook, but she didn’t want to hear it. She was talking very optimistically about getting better and he knew that whatever they did, the chances of her surviving more than two years were really small.

When Laura had a recurrence, she ended up in a medical consultation where she was given information without her requesting it. The doctors were so used to dealing with Pete who had been saying, ‘Tell me how it is, I need the truth' that they assumed that both partners were on the same wavelength. Following this we had some very painful sessions where Laura came much closer to Pete’s worldview of what was happening. It was hard for me as a therapist to know whether that was a good thing for Laura. My concern was that exposing this together might create distress of a level that I couldn’t contain; my fear was mirroring Laura’s.

We see how different belief systems made it difficult if not impossible for Laura and Pete to understand each other and communicate openly. They needed help to see that although the illness was the huge thing in both of their lives, Pete looked at it as a disruptive ‘illness’, Laura as energy and time engulfed in ‘getting better’. Another striking disparity in beliefs was Pete’s focus of attention on mutual support, as in ‘when you marry you leave your family to attach to your spouse’, as opposed to Laura’s looking to her mother for support.

Laura and Pete’s story also brings to the fore how people perceive and accept things at differing pace. Earlier we considered the importance of timing. In talking to patients, this is crucial. If we want to be patient-centred we need to be aware of how the patient is experiencing time. If information is pushed at them, they may feel that their psychological space is being invaded and may not be receptive to it or may be frightened by it into a sense of helplessness. It takes fine-tuning from the carer to perceive the right time and the right way to give sensitive information.

Laura and Pete’s story further highlights how therapist and carers share the patients’ and families’ concerns and difficulties in dealing with the truth about diagnosis and prognosis. There is no clear-cut answer. Twenty years ago doctors were trained and instructed not to tell patients. Now the trend is the opposite, yet, as we see with Laura and Pete, there are issues of best judgement about what the patient and family can bear and what will help them, as well as how to best communicate bad news.

Talking about getting better was Laura’s way of coping and keeping the pain away. When she was eventually confronted with her prognosis both she and Pete had a difficult time. Still, it seems this was a pivotal occasion because it released Pete from the burden of keeping a secret. He was able to talk to Laura about how he wanted to share life with her; they could both look in the same direction. Their story echoes research findings that in dealing with cancer-induced changes, effective communication between spouses reduces conflict and role-strain and promotes cohesion and mutual support (Vess et al., 1985, 1988).

Chloe wondered whether knowing the prognosis was a good thing for Laura, as she was aware how painful and hard it was for her to face dying with two little children. One day Laura and Pete were really cross with each other:

Pete complained, ‘Laura’s doing nothing with the baby, I have to do all the work. She’ll do things with the older child, but she won’t do anything with the baby. I’m tired and fed up with all of this.’

I made an intuitive guess, and asked Laura whether it was quite scary to do things with her baby daughter. It was indeed. It was not the practical things, but when I said, ‘Are you afraid of getting emotionally close to her?’ Laura absolutely dissolved into tears. She was fearful of getting attached to this little girl because she knew that she was going to die and she wanted to protect herself from the pain of having to say goodbye to this baby. By this time Pete was in tears too and they cried together. We kept with it for a while and had the following dialogue:

Chloe: After you have died and Pete talks to your children about you, telling them stories about their mum as they are growing up, will he be able to tell the same stories to your little daughter as he can to your older one?

Laura: No, he won’t be able to.

Chloe: So is there something you can do that actually will help him to tell the same story? What stories would you like to tell?

That set them off, and it was really nice. I just sat back and listened to them telling each other about the stories that Pete would tell and the stories Laura would like him to tell.

When someone in a family faces terminal illness, bereavement and grief work can sometimes start before death. It may have been very difficult for Laura to confront her prognosis, yet working through the pain of knowing the truth opened a channel of communication to the benefit of all the family members. Laura was a patient, and she was dying, but in sharing the stories to tell the children she was still a mother and a spouse in the here and now. She was living her dying.

Acknowledgements

Text extracts from Mayne, M., The Enduring Melody, Darton, Longman and Todd, London, UK, Copyright © 2006, reproduced with permission from Darton, Longman and Todd publishers.

References

Mayne, M. 2006. The Enduring Melody. London: Darton, Longman &Todd.

Vess, J. D., Moreland, J. R. and Schwebel, A. I. 1985. An empirical assessment of the effects of cancer on family role functioning. Journal of Psychosocial Oncology, 3, 1-16.

Vess , J. D. , Moreland , J. R. , Schwebel , A. I. and Kraut , E. 1988 . Psychosocial needs of cancer patients: learning from patients and their spouses. Journal of Psychosocial Oncology, 6, 31-51.

 
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