Should Custom and Religion Be More Important Than the Comfort of a Terminally ill Family Member?
Major Life Events Bring Out Differing Character Traits
Having a terminally ill family member will be the most heartbreaking period of any person's life. You watch someone you knew turn into someone you almost do not recognise and there is very little you can do about it. Caring for a dying loved one can become draining but also eye-opening. You start to realise you either have double the strength you had before, or you suddenly become very scared. The roller-coaster of emotions is overwhelming.
When my mother passed away earlier this month, it was hard to know what to think or how to behave. She had been suffering with stomach cancer for almost a year and had become terminally ill. This was something we had never encountered before as a middle eastern culture. Most of our family and friends just did not know how to behave around us when we finally told them mum had been moved to a hospice. Some decided to take over. Others gave us some small space but mainly people were rude, cold and dismissive of our feelings and most importantly my mother's comfort.
In the 3 days that mum was in the hospice, on the first day within hours, family and friends of our parents suddenly turned up in large numbers. Mum was very tired and uncomfortable with them being there, but because of custom and tradition she politely made conversation with them all. This added further stress to her already dry throat and became quite painful to watch. I eventually became quite enraged and threw the family members out, not once but on several occasions. I became known as public enemy number one in our culture and was quickly known as the 'rude' one. There is often a person referred to as the black sheep in many families, a notion that seems to oust one member and judge them because they behave differently to the norm. An archaic hurtful label to pose on anyone, especially those who are grieving.
This was however not the only occasion where we clashed. A group of extended family members decided to have a family meeting about where mum would be buried within hours of her being moved to the Hospice, without myself, my father or brother involved. It was not only shocking but also quite hurtful. They approached me and told me that their family burial plot should be the one to go to.
When I argued with them about this, I was already on the path of being accused of having "blood in my mouth", a term in Iraqi culture which meant I was spitting poison and being very rude to people. Not once had anyone considered how it felt to approach the daughter of a dying woman and discuss burials with her before she had even died. The shock was too much to take in and at this moment, I knew I had to gain my own mental strength and not let them take over.
The Stages of Grief
After reflecting on this, it occurred to me that some people thought that it was important to be organised, turn to religion or even dismiss that anything emotional was happening at all. We often hear that there are several stages that people go through within the grieving process, these are even more apparent when suffering from anticipatory grief (anticipating or knowing someone will be passing soon). The 5 stages of grief were first termed by Elizabeth Kubler-Ross (On Death and Dying, 1969). The stages include but are not limited to: denial, anger, bargaining, depression and finally acceptance. The stages can occur in any order and are not limited to the death of a loved one. I am yet to find out whether I have achieved all of the stages as mother's death is still so fresh, I can definitely claim that I have felt denial however.
The harsh reality of the sudden or even expected death of a loved one can cause you to feel an array of emotions. There are many feelings and stages that Kubler-Ross possibly hadn't embarked on, especially when considering the extended family, cultural and religious practice and the modern technology era. We now have a vast array of places to turn to online to find out information on how to cope with grief. We can "search" for religious reasoning and have moral dilemma's answered on blog sites, websites and social media. The network of information makes dealing with death more than just a 5 stage programme.
This Just Doesn't Happen To People Like Us
As a 29 year old female, who has recently lost her mother, I feel as though at this present moment, I have little support now from our supposedly collectivist community. All of the people who suddenly wanted to be useful have now disappeared. They centred most of our religious and cultural burial practices around praying on and around food as an offering for God. Even when I suggested I would rather give money to charity than have food at the wake, I was hounded on several occasions to "feed the five hundred" as it were. A miscommunication, a lack of understanding between my immediate family members and the extended family meant that we would continue to argue, losing focus on what really mattered: Mum.
It made me wonder why and how other cultures treat their loved ones when they have to say goodbye. I miss my mother beyond any reasonable explanation and cannot begin to understand why she was taken at such a young age but it made me more upset when it felt like her own family then neglected us once she was gone. Conflict resolution for extended families seems like it does not exist in situations like this.
Friends of the family often came over and offered to help and be there instead. Several south asian friends suggested that we shouldn't be cooking or stressing and that they should be looking after us. Our English neighbours offered their parking spaces to us and were there to lend an ear when we needed to talk. Each person approached us differently and we in turn did not know what to do or say. No one does in the circumstances.
When the house became empty with the lack of mum's sweet singing voice or the smell of her delicious food cooking in the kitchen, we knew that we had lost her. We fought with our beliefs, our own family ties within our home and with the deeply ingrained idea that this kind of death just did not happen to communities like ours. None of our family expected to ever have to deal with anything like this. Many people don't. It isn't distinctly something only related to my family, many people reading this article would also never have thought that it would or could ever happen to them.
Hospice - An Almost Unknown Word In Arabic Culture
It later occurred to me that places like Hospices or even the idea of terminally ill patients, was not something that was heavily discussed in middle eastern or even specifically Iraqi culture. It was never a topic I had ever grown up hearing about and we did not even know the alternative Arabic word for 'hospice' (I still have not been able to find the alternative).
For this reason, people behaved inappropriately at the hospice and often made loud noise, would stay for hours and refuse to leave even when told to, by the direct family members or the nursing staff. Our collectivist community decided that it wanted to suddenly become 'useful'. We made too much noise for the other inpatients and often family members would argue or pray very loudly, causing others, including my mother, to feel anxious because of them. Arguing with this behaviour or saying anything against it was morally wrong in our tradition and I am now ousted by my community for stepping up to them and questioning this behaviour.
Where Do We Go From Here?
When conducting some research into the topic of Hospice's in middle eastern countries, it occurred to me that there is only one provision in Iraq that deals with terminally ill patients. This in comparison to the United Kingdom's 1,397 institutions was a shocking figure (Wright et al, 2008). This explained to me that we as a collectivist culture, that so often is proud of how much we support our family members, was actually failing in providing care for those who are terminally ill. It is then of no surprise that our family members did not know how to behave at a time like this with our mother. Being terminally ill was never dealt with in their own country that well, so why would we expect them to know how to behave in another culture with the terminally ill?
Often I sit and reflect on what has happened here. Rather than focus on all the positive things that my mother taught us, or the beautiful singing voice she had, or her zest for life - I am instead now heavily focused on negative things such as being neglected by family members. This is definitely not what I should be focusing on but it made me question the relationships we used to have with our extended family. Did we ever have any real connection to them? If so, we would have been possibly better nurtured at a time like this. Would they and the rest of our middle eastern background benefit from better knowledge of how to approach terminally ill patients? How would we approach it and what sensitive factors would need to be taken into account.
An interesting article by Deena Aljawi and Joe Harford (2012) suggest that training needs to be given to healthcare providers with regards to approaching palliative care in middle eastern or Muslim countries in a very sensitive way as their are many differing schools of thought on approaching end of life. I would argue that it is not just the healthcare professionals which need the training, but societies as a whole who have a limited exposure to palliative care who also need to be told how to approach terminally ill patients. This could then save many dying people from discomfort and overbearing extended family members or religious practices that they may start to question as they approach the end of their life.
Are There Any Solutions?
I wish that I had been given more of an opportunity to sit with my mother and talk with her privately when she had the chance to. Instead I will now forever feel bitter that those last few days were taken away from us. This is not how I should be feeling and neither should any other person having to experience losing a parent.
Better communication skills, counselling (another word which has no alternative in Arabic) and other forms of people management should be introduced in a sensitive way to help our cultures to grow and flourish. More involvement of religious or educational leaders in middle eastern countries and other similar places should encourage sensitive behaviour towards the dying. Comfort should come first above all other practices however some may argue that religious custom is required above all else. This is where the disparity may lie.
I urge whoever reads this, if you are or know someone in a similar circumstance then take control of your own situation. Living with regret is not healthy, living in the shadow of extended family members is a form of abuse. Do not stand for the bullying and remember that you and your loved ones have the right to be comfortable and to do things in your own way. Try to sensitively educate your communities and encourage them to understand how important end of life care is. Religious and cultural customs may be important, but the comfort of a dying person should be of paramount importance. I wish that mum's comfort was the priority above any religious or cultural customs to her extended family but unfortunately you cannot change a community or a way of thinking overnight. I hope this post helps you to make some small step towards changing your community for the better.