This past week saw a sad event in my family with the death of one of my uncles in Ireland. Sadly, I can't go over there as it is too far and I lack the means to pay for it right now.
But it got me to thinking about family and friend relationships, how death and certainly the prospect of it can have such an effect on those relationships either in changing them or making one realise on what those relationships are based on.
Certainly, bereavement in any language and culture is an intense emotive thing expressed as much from the point of shocked numbness to out and out screaming hysterics. Cultural and religious rituals vary but most include acknowledging the event, letting go of the deceased and mourning their passing. Some will encourage the celebration of that person's life too. But all usually have an element of acknowledging loss and sorrow.
In the brain tumour community, death means many things, from the loss of the assumption we are all of good health, loss of independence, loss of work, loss of identity, loss of innocence in a way, up to and including coping with the death of a dear one from the disease. In my case it was the loss of a career, loss of being productive, and some financial security and independence. The potential loss of life isn't yet an issue with me as my tumour is non-malignant ( I *totally* refuse to call it 'benign' now as it's effects have been anything but!) and so far slow growing, but that can change quickly and still has the potential to cause a massive amount of damage.
For some it will be about having to face the severe limitations on their life span, with all the distress that goes with it. This is where extended relationships and understanding are so important. But what if the patient doesn't want that closeness? What if family/friends can't cope with the prospect of it?
With Uncle Kevin's passing, it has not only reminded me of the distance both in miles and closeness between my family and myself, especially as I haven't physically seen my Irish relatives for a very long time now, but also the fact I have allowed myself to grow away from them. I live in Cornwall as most of you reading this will know, so the physical distance with the difficulties of travel is there. I cannot afford to fly, and train/car takes a long time. But rather than see that as a challenge to overcome, I have allowed it to isolate me further, yet I can get to New York or Toronto easy enough! But then these are major destinations that are far better served and easier than County Wexford from Penzance in terms of ease of travel and cost.
So the solution is right there for me, to make a better effort to see my family, to work on that so even if I can't make it to Ireland, I could get up to Wales more often to see my brother, plus he's only an hour or so from Hollyhead so will try to sort something there.
But what if family relationships are strained? What if there is a 'past' that has been buried? What happens when the patient goes from being the life and soul of a party to a disabled, painful reminder of our own mortality?
With death and funerals, like weddings, you can bet your bottom dollar that any cracks in a relationship will be made worse. The intensity of emotion and regret compounds the problem and throws up a myriad of old wounds. Sometimes an event like this can bring people closer together, but I find often that is only transitory as the need for comfort is more important at the time, rather than the opportunity for really healing the breaches and making a conscious effort to build on that.
Over the years, in my career I have seen many die (I hope none due to my nursing efforts!) and have witnessed usually a quiet dignified presence of family and friends around the deceased, but have also had to break up fights too. Large divided families with massive issues are probably the worst to deal with, especially when you have a mix of hurt, rivalry, jealousy and some socio-pathic need for attention.
Sadly the above does happen and quite often. Yes, most of it is down to grief and the inability to deal with such powerful emotions and feelings, a lot of that I can really understand and do. But some as I was to discover later while talking to a psychologist, can also be the start of a 'power struggle' within certain members of the family, as well as a method for attention seeking.
But with most passings (I use that term to include before death) while family and friends need support, they also are in turn are very caring to the deceased as well as each other. If some want to help give a little care, such as comb hair etc, I have never stopped them giving me a hand (within reason) with that because it's most likely that will be the last act of love they can give to the patient while they're still alive. One of the best lessons I learned was from a very wise health care assistant who said that the last care or occasion a family member or friend will have with the deceased, is how they will remember that person for the rest of their lives. And that is so true.
So what about those who become disabled and/or dying? What about how they are often treated by those around them?
I have been *very* lucky that I have had nothing but the best support, care and love from my family and community. Maybe it's because I have a big mouth and have been very open about 'Algy', not sure. But certainly my community in Penzance have been very supportive and I have found that to be the case with others who have faced difficulties too.
So it utterly breaks my heart when I read on the forums, face book pages and on twitter the difficulties faced by those who have been for all intents and purposes abandoned by those around them, or feel that they have been anyway. That statement can be as much the patient's own perception rather than it being the actual case. But certainly there does come a point where one does have to face the journey alone, for all that they have many caring people around them. The journey in this case being finally and irrevocably facing the fact of their illness and what that means. And a lot of people cannot cope with that.
Of course, as with any change, again it can throw up the old wounds, issues and create new ones as people can and are changed by their experience. Plus the fact in the UK, depending on what your tradition is, we tend to avoid the topic of change, death and dying like the plague.
We know it's going to happen to us but we rarely acknowledge it aside from maybe resorting to cliché and generally not talking about it. We see death and destruction on the news almost daily and recoil in horror at the injustice of it all, but yet we're very bad at taking an honest look at ourselves and our own mortality in the UK. Death here belongs to older relatives, to some far off war or crises, so we can be outraged or say 'well they had a good innings' etc to be tidied away in those parameters.
The person who is disabled/dying often find themselves in a place where they are powerless, and the hardest part for them is that often those around them don't want to acknowledge that the patient *knows* they are dying and often feels guilty about it. It's a tough thing to talk about, to look at, to see in an honest way because by doing that we have to confront the inevitability along with the patient and because of that, there is nowhere to hide from it.
Their relationships change, and for a lot of brain tumour/cancer patients their last years can be filled with treatments, often painful, routines etc, their whole lives being defined and directed by their illness. Carers and loved ones are also overwhelmed by this and the roles of husband, wife, partner, parent, sibling, lover, friend etc are lost in a sea of trying to give support, with little or no time for the relationship that was there in the first place, also having to often deal with 'role reversal' where the cared for used to be the main bread winner etc. And sadly some end up avoiding the patient like the plague and often the patient doing the same by isolating themselves as they feel like a burden to those around them.
It's a subject I have never been afraid to talk about in the past with patients, as especially at 2 am when giving care, they are more likely to voice their fears and regrets, but then maybe that's my way of dealing with it too. By being open about it both as a past carer and now a patient, deep down inside I hope I can remain a fountain of wisdom to all around me but have to face the fact I will be and am actually quite scared of death, of the process of dying that I and those I love are going to have to go through. And also the fact as said before we have to at some point take that journey alone both as the person who is dying and those who are left. My 'openness' maybe based on the fact that by talking about it, it might stave off the pain, grief and isolation, by letting me keep some sort of control, by 'facing the enemy' if you will. But I doubt when the time comes, I will be so brave.
Elisabeth Kübler-Ross set the standard for looking at the process of death and the stages of grief which has helped to bring some understanding and clarity to the process, but I heard a line in a TV Series* where a police officer has witnessed the murder of a friend, and has a colleague who means well, who tries to lend his support but who is totally inept at doing so. When he keeps mentioning the Kübler-Ross model, her response is "So I'm following some sort of model. God forbid my feelings should be personal and unique!" and that is so often overlooked.
While there are stages to grieving and loss, each person's experience *is* unique and personal and can be quite different to those around them. We want easy answers and a way around the feelings and situations we're going to have to face, and whilst works such as Kübler-Ross can add some insight to the processes, they cannot reveal the answers on how to deal with the deeply individual, personal grief. There are no easy answers sadly and never will be. All we can do is go through the experience, nothing more but hopefully find help and understanding along the way too.
*Death in Paradise - Season 2, Episode 5. (Red Planet Productions/BBC.)