Death and Bereavement

I’ve been thinking about death this week. There isn’t anything particular that’s triggered it. I think about death a lot actually. Does that make me a morbid person? I don’t think so. Death is, after all, a key part of life. I think we should all think and talk about death far more than we do and I’ve never really understood the reluctance to do so. Talking about death when you are dying is a natural thing to do, I think. I’ve never been aware of dying. Talking about death when it isn’t provoked – when you haven’t experienced a recent bereavement or when you haven’t been told that it is something that is more imminent, is something that is less common. But it’s something I believe we should all do more of.

I remember when my father was dying how difficult it was to have conversations with him about his funeral preferences when he was in a hospice. It made me think, as I considered with my siblings, how much easier it would have been to have had those conversations earlier, when there wasn’t a death sentence over his head. My parents both had ‘planned’ deaths in a sense. In that illness precipitated their respective deaths. Sudden death though, is a completely different experience and planning, thinking and talking about it may help those who survive beyond us.

I’ve found it difficult to talk with my partner about our respective deaths. I have thought a lot why that might be. Perhaps there’s a thought that talking about it might make it come sooner, that innate superstition that resides in many of us. I think there’s probably something to it. I think it’s also the difficulty in conceiving of what life might be like when someone you love is no longer around. When my father was dying, I remember trying to think about life without him. I couldn’t really manage it very well. I was worried about how I would cope. What the world would look like without being able to talk to him about it. The imaginings I had didn’t reflect reality because when you are bereaved you don’t have the choice that imagination gives you. Sometimes, as a thought experiment, I try to imagine living without various people that I have become accustomed to in my world but I know it’s not a ‘real’ belief. Because, in my fortunately limited experience, nothing can really prepare you for a death of someone who you love, need or who affects you.

We talk about pathways of bereavement but I don’t think there really is. I’m not sure that Kubler Ross has helped me very much with stages of bereavement or however that’s interpreted now. The theories seem to indicate that there’s a prescribed path to take. You go through one stage, then you pass to another, then you pass another until you deal with it or ‘get over’ it or ‘accept’ it or whatever the most sensitive language says. Of course, I’m being a bit flippant. Thinking of my mother’s death which is now over thirty years ago, I haven’t accepted it and I know I still get angry sometimes,  just as I did as a ten year old, at the sheer injustice of it. Now though, I am less likely to blame her personally but it’s an interesting thing because I do ponder who or what I’m actually angry with. Not ‘accepting’ doesn’t mean it affects my day to day life but it means that wherever we are at in life, we are touched by those who came before us, affected us, loved and hated us (because it’s not just a relationship of love that triggers senses of loss) we are the sum of those who passed us on the way.

I think about people I have actively disliked who have died too, and what my bereavement process has been for them. I won’t name them or go into too  many details, but it is a part of who I am in the same way. Yes, there’s someone I should, perhaps, have ‘made peace with’ in the normal parlance before they died. But then, I think ‘why’ and for whose benefit. I didn’t really ever forgive them for what they did so why would I pretend to when they were dying. Would it be for their benefit or for mine? Possibly neither as it wouldn’t have been an honest apology and we’d both have known that. Does that mean hate and resentment are now burning up inside of me? No, not really, because the way we treated each other was honest based on the experiences we  had.

I’m not sure what I’m trying to say anymore except that there is no path that tracks the way bereavements happen. There is no ‘right’ way and no ‘wrong’ way of dealing with loss. Some people need to talk and some prefer not to. Some are eaten by regrets and others aren’t but it doesn’t mean that one person is ‘further down the path’ than the other. One of the things I found most helpful was people acknowledging that I’d experienced a loss. I didn’t want other people not to realise that my world had changed, even though I didn’t expect them change any of their actions as a result of that.

Although we don’t talk about it very much, particularly when we are healthy, I think talking about death is enormously useful. Telling people what we want when we die or if/when we are dying. Trying to think about it because we will all die and be affected by death. It isn’t always easy but it is useful.  We will all die with regrets. That’s humanity. It doesn’t mean forgiving people who you don’t feel you can or being less the genuine or honest when people do die. We try to remember the good but sometimes we need to remember the bad too.

In the end (pun intended), I think talking about death is what helps us to live and establish our own priorities – about what and who is important to us and what and if we want to leave a legacy behind. In order to live honestly, we need to bring death into our lives.

The Price of Stigma

It has been said that the fight against the generally felt stigma about those with mental illnesses is a vain fight. Particularly, there was an article I alluded to about a  month ago that comes to mind.

And this was one of the points that came to mind when considering Robert Enke, the German goalkeeper who had been suffering with depression since 2003 who died by walking in front of a train on Tuesday and was, according to his widow, scared of his mental health difficulties becoming public as he felt he might lose his adopted daughter, Leila, after the death of their own child, Lara.

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I wonder how much the pressure of firstly being a public figure and well-known sportsman and secondly trying to keep hidden a depression that is obviously profound, added to the distress. Obviously enough for him to be driven to act.

His wife gave a deeply moving interview with the media which brought to light some of the pain that he and his family had been suffering and had been hiding from the glare of the media spotlight.

Teresa Enke said: “I tried to be there for him, said that football is not everything. There are many beautiful things in life. It is not hopeless. We had Lara, we have Leila.

“I always wanted to help him to get through it. He didn’t want it to come out because of fear. He was scared of losing Leila.

“It is the fear of what people will think when you have a child and the father suffers from depression. I always said to him that that is not a problem.”

Stigma, shame and misunderstanding of mental illness possibly are particularly burdensome in a ‘sporting’ environment where pressure is so intense and everything revolves around supreme conditioning of mind and body.

As the Times reports,  suicide is the highest cause of death for men under 45 in the UK. I wonder how much the gender perceptions that women are more likely to want to talk through things than men play in the role of treatments. Sometimes depression can be perceived as a ‘women’s disease’ and men may be  more likely to downplay the symptoms in general conversation until crisis level is reached.

So the general perceptions of mental illness and attitudes and assumptions about those who may suffer is not just thinking of terms of ‘the other’   – it is more than sympathy and empathy – it is about regarding seeking help and treatment for mental health in the same way that we might be guided to for physical health – and while I accept that it more likely to happen if you work in a supportive environment and have a strong network to support through difficulties, it might be more difficult in competitive environments that exist in the professional sporting circles. That makes it more painful, I would expect. Moving towards a more open discussion about mental illness has to be done for the sake of the societies and communities that we live in and work among.

In the meantime and for what it’s worth, I definitely have some positive thoughts towards Enke and his family and the pain that they have suffered and continue to.

Death

I have worked consistently in older adult’s services since I qualified. I’d say, at least until a few months ago anyway – when I seem to have accumulated a few people in their late 60s –  that most of the people I see regularly are over 85. So it isn’t always surprising that we are confronted with users who die. It is a part of the process.

But however much ‘expected’ it might be, it can still come as a shock. Over the past two weeks, two people that I work with have died. Actually, they are the partners of people that I work with – the carers. Sometimes it happens that particularly with the more advanced dementia, I work as much if not more with carers at that point.

In fact, I came back from the weekend to the news that someone I had seen at home as recently as Thursday had been admitted into hospital on the Saturday and died apparently quite suddenly. There was no sign of anything untoward on the Thursday, in any case. In fact, we were discussing a move for the couple to sheltered housing.

She had been the carer for her husband – very reluctantly accepting services slowly to ease some of the strain that the years of managing alone had taken out.

The comfort is knowing that her family were around her at the time.

On a practical level, I arranged a respite placement for later in the week when some of the family need to return back to their homes. But while doing so, and considering a similar situation a couple of weeks ago, I was thinking about how we manage and approach death.

It is still a great taboo in a sense – we are not encouraged to talk about it widely – but you can build up very strong relationships in the short time that you do intervene, in fact, the therapeutic relationship is the key to change.

I try to offer as much support as is needed. Sometimes it is a matter of practicalities as in this situation. Mr G was reliant on his wife for support. We are therefore looking at a rapid move to residential placement – via a respite stay which has been set up for the immediate. I don’t think realistically that Mr G will be going back home but at least he has a few days with his children around him to be at home.

A couple of weeks ago it was a similar but different situation. Again, it was a spouse who died but more expected really. The children had made their way from other parts of the country to be near and some preparations were able to be made.  Additional care was put in where necessary but although I try not to be pessimistic, I wouldn’t be surprised if the deterioration is more rapid now.

I wonder how much we take on the grief of people who, as they get older, lose not only spouses which we can all relate to, but all the people around them. Friends, colleagues, siblings, neighbours. Repeated grieving over and over again – perhaps sometimes with little time to absorb the information in between.

There are no answers really. That’s the thing about death – expect providing support as needed and a space to either talk or not talk.

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Jade

Over the weekend, I was reading a post by Madmutt on his blog – about Jade Goody. He explains some of the excesses of the media coverage and I can’t help but agree.

Jade made her name in Big Brother in the UK and has become a product of reality television in just about every form that it has up to having her own show now where her life is shadowed by television cameras.

Jade, tragically, has an aggressive form of cervical cancer. She is desperately unwell and she has been told that she is at the latter stages of the illness as the cancer has spread.

It is desperately hard to feel anything except enormous pity for Jade. She is young and she has a young family. She made a statement that she wants to publicise her illness in order to create a better future for her sons.

I don’t think we would begrudge her that, except, as Madmutt says, does the limit come at any point as we are ‘treated’ to an endless stream of news and photos on a daily basis which express her clearly deteriorating health.

Of course it is right that she should be praised for raising awareness of cervical cancer and the need for screening.

But I can’t help but feel uncomfortable about the bombardment of media interest in her condition. I know she wants it. It does have a feel of excessiveness though.

My ‘take’ on it, as you will, is that my own mother died of cancer when I was a little bit older than Jade’s children are now. The time between diagnosis and death was relatively short – months, rather than years.

I can’t help but think of Jade’s children in the future and how they will perceive the pictures of pain that are daily streamed even on the BBC news. There is no way to avoid the media coverage.

Perceptions of death, dying and illness are very different when viewed through the eyes of a primary age child – who might be sheltered from some of the pains of life by a parent – you know, the hamster that ‘goes to sleep’ or the dog that ‘goes to live in a farm in the country’. But when it is the parent that goes, these explanations and simplifications come back to play with the mind.

In retrospect, it is perhaps easier to see how I moved through different ‘stages’ of grief as I moved through my adolescence. I think the ‘anger’ stage was one of the more difficult to bear.

I was angry at her for leaving me – us (the family – my siblings and father). How could she do this? Why didn’t she fight harder against the illness?

Of course, you move on from this stage eventually – and obviously, I am at a very different stage now, but thinking about Jade’s children, I have to wonder how helpful this process of sharing their mother with the media will be to them in the longer term.

I hope they have a lot of stability and support around them. My fear is that sometimes more money does not equal more support.

And I really do hope the media back off soon. It is getting beyond tasteful – although I think that happened a while ago – and although I accept she wants to have the publicity, I can’t help but wishing there were a way to avoid it or restrict it to outlets that I choose to read or buy.

Perhaps that is a more personal reaction from me though, as I can’t help but draw parallels and can’t escape from some of the more painful memories that reside in the ‘me-as-a-child’ sections of my mind that are for the most part locked away.