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.

To Say Goodbye

The best kind of ‘goodbyes’ are the planned ones. We can discuss with someone a couple of visits before their discharge from the service about how they might be supported on discharge and we have already, by this stage, put into place all the available means of support through both formal and informal means.

As we say goodbye, a recovered well-supported person waves us out of the door with a heartfelt thank you.

That’s a decent goodbye.

It doesn’t always happen like that. Sometimes people are desperately worried about being discharged from the service and you leave with either spoken or unspoken hostility.

‘How could they leave me like this?’ ‘I can’t manage without them’ – but you do and they can.

Sometimes it is after a review in a residential placement and you might leave someone in the hands of others to provide the care.  The nature of those goodbyes change depending on the restfulness and peace of the service user you leave behind.

A colleague of mine commented how sometimes you feel that you almost become a part of the lives of the people you work with, especially when you work with them for a few years, and then you flit out like a shadow and barely exchange more than a nod and a smile when you pass the street. If you pass in the street.

Sometimes you don’t get to say goodbye at all.

Sometimes death causes a one-sided goodbye.

Sometimes all you have to reconcile yourself is the missed call on your mobile from a service user who tried to contact you the day they died. And you didn’t answer. Not through ill-will or callousness  but through the general pace of work undertaken.

I wonder if he was trying to say goodbye to me. I’ll never know but I’ll imagine he was.

That’s what we do as humans. We ascribe our own personal perceptions of feelings to other people. And sometimes to animals. We can imagine everyone thinks in the same way as us. It can help though.

You see, we do flit in and out of peoples’ lives. But they also flit in and out of ours. Some more than others of course.

Each has a lesson to teach, a life lived. Opportunities taken, grasped and lost.

Each life was filled with hopes, dreams and aspirations. Sometimes things worked out and sometimes they didn’t.

This is the importance of reflection at every stage of this work. It contextualises events, lifes, people. We extrapolate out the lessons learnt for the next time and the things we could have done differently. Like pick up the telephone calls as they come in.

Sometimes you get a sense of when a life is nearly completion but sometimes it hits like a bolt out of the blue.

Sometimes you just wish it could have ended with a goodbye.

That’s when you realise the luxury that there is, on both sides, in a well-managed and well-scheduled goodbye.

You value them all the more.

Death

A high-rise residential apartment building in ...

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It was a fairly standard visit as they go. I knew the block of flats. It was one of those seemingly ubiquitous 1950s  high rise blocks that had been built in the shadow of the wartime bombings.

I knew that particular block though. You get this, when you’ve been working in an area for a fair amount of times – particular estates or blocks that will bring back a range of memories about the people you know who live behind the doors.

There had been a family there, in this block, with whom I’d worked for a couple of years until I was moved to a different patch and handed over with a fair bit of reluctance on both parts, to a colleague.

Now, the boundaries have been redrawn again and I found myself in exactly the same building – in the flat directly underneath the one in which I had spent so much time.

On my way in, I tried for the life of me to recall the name of the family that I’d been working with previously. It worried me that I had spent so long in the life of a family and I couldn’t remember their surnames (I remembered the first names fine, of course). I pondered about the nature of my job, flitting in and out of lives but the lives continue and have to deal with such anguish of illness and tragedy. I can walk away from it.

As I went towards the lift on my way out of the flat I had been visiting (I was on the 11th floor at this point, and while not adverse to staircases, I sometimes have limits), I saw the woman who I had visited so many times a few years previously, coming down the stairs.

I immediately remembered her surname. Thankfully. Maybe I just needed to connect the face with the name.

She did an almost double-take when she saw me and she greeted me warmly. She told me the rest of the story that I knew, partially, from my colleagues’ visits of her husband’s death.

She told me and I listened. We had, by this point, moved downstairs into a more sheltered area. She interspersed the story with tears. I listened more. We walked a little way together.

‘People tell me’ , she said ‘that I should be glad to have got my life back’.

She had been a devoted carer for her husband who had needed an incredible amount of care at home.

‘And that’s not how I feel’.

I nodded, and listened some more.

I gently reminded her how  much she had done but mostly, I listened.

Throughout the conversation, there were tears running down her face.  I offered her a tissue but she did not wipe away the tears. She just continued to talk.

As I was heading into a different direction, she touched my arm lightly and thanked me.

‘I can’t talk to anyone really about his death’, she said. I nodded. ‘I mean about the details – about what happened’.

‘I don’t want to upset my children, you see’, she said.

I nodded and explained that I felt glad that she had been able to share this with me.

As I headed up to the bus stop back to the office, I pondered the nature of random encounters and the importance of knowing and being attached to a particular community.

I was also pondering the way that we think and discuss death. I have worked for almost 10 years in older adults services. Death happens. It happens in many ways but it never stops being something of a shock.  It never stops being the crucial key in the life of the family around that person.

When my student was on placement, two of the people who were allocated to her died. We reflected a lot about the nature of the job we have and what we do when that work comes to an end through a death.  Sometimes it is difficult to have a discussion with family members after a death has taken place. It might feel awkward or intrusive. It depends a lot on the length of time you have known a family and the nature of the involvement – whether it has been welcomed or not.

Generally, I think back to my own experiences of my parents’ and grandparents’ deaths and try and pick up on the need to connect and acknowledge the life of someone rather than trying to brush what may be difficult conversations under the carpet.

Death is still a taboo. Especially to those who do not have personal experience of it.  For me, I count my childhood and adulthood through the deaths of those whom I have been close to. That sounds dramatic but it builds a unique perspective. I spent much of my adolescence trying to think through issues surrounding death. Through the anger, the blame, the fear of ‘being left’, the confusion – what do you do WITHOUT that person who was the rock, however unwell, however much disease ravaged the body,  the unresolved pieces that need to be fit together.

One thing that I have learnt, through personal experience and through professional experience is that it’s good to talk and conversely, it’s good to listen quietly and let the stories be told.

Sometimes when you face a bereavement some people, friends, family, for their own reasons (often fear), don’t want to listen – they express sympathy but they display discomfort. Sometimes people don’t want to hear about death.

Listening without comment, to the commentary about a person’s last moments isn’t always easy but it is undoubtedly important.

Yesterday Community Care had an article on their website talking about the need for social workers to have training around talking about death.

It struck me as a coincidence. As I talked about death. In a corner of a lobby of a high rise block of flats in central London. And I think it helped. I hope it did.

Love and Death

At 8.58am yesterday I was just about arriving at work and Mr A’s death was certified. I didn’t know about it though. I didn’t know until about half an hour later because Mrs A’s carer had arrived at 8am that morning and had found Mrs A in a distressed state because she couldn’t rouse her husband.

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When the care agency phoned to tell me about the recent death, a lot of thoughts raced through my mind. Firstly, Mr A was relatively young – late 60s. I had been to visit Mr and Mrs A last thing on Friday. Secondly my thoughts flitted to Mrs A. She needed pretty much constant care. We have a substantial care package as it is but there wasn’t any way we’d be able to leave her alone. Her upset and distress as well were to the forefront. It was a content and companionable second marriage for Mrs A after a first marriage marked by great tragedy and significant abuse.

So I made a few phone calls to explore possibilities of placement. There was a bed available on one of the wards but fortunately, there was also a bed available at a nursing home where Mrs A had been for respite care – they knew her – they knew Mr A. They could accept her immediately. More telephone calls for transport. Oh, and the animal warden.

And so, just over an hour after an official certification of death, I arrived at the flat. The police were still present as they were waiting for an undertaker to arrive. So I sat with Mrs A and the corpse of her husband all morning.

It was hard to ignore the body, although it was covered. The flat was warm, the photographs were plastered all over the walls. One cat mewed around our feet – the other we think, was too curious about the body in the next room.

The police flitted in and out – checking identities, trying to find out information. Mrs A cried. She has a fairly advanced dementia, but she cried. She sat in her wheelchair and cried. There was an absolute awareness – although I had been told by the police on my arrival that she was confused and therefore didn’t know what was going on. She certainly did when I spoke to her. She told me about not being able to wake her husband. Just as had happened with her first husband. In the same flat.  She pointed to the fruit in the bowl that Mr A had bought for her the previous evening. And the other things he had done for her.

For he had done a massive amount for her. My first meeting was in hospital when trying to arrange a return home for her. He came to the hospital every day and sat with her through the entire visiting period. Devotion was an understatement. And for Mrs A, her eyes quite literally lit up when she saw him and when she spoke about him. When making a plea for a return home over the more favoured move to residential care, it was the relationship with Mr A that sealed it. Her clear joy at being with and around him. I think it almost moved me to tears as I explained in probably over sentimental ways to the funding panel the need for a return home for Mrs A. Against most of the advice of the hospital.

I have done some courses in bereavement counselling. Granted it was years ago and you draw on what you can. But I’m not sure about those moments, minutes and hours after a death. But I sat with her. I held her hand when I couldn’t think of what to say. Most of the time, I didn’t say anything except an explanation of what we had arranged. We both knew she wouldn’t be returning to the home.

A neighbour who had seen the police and ambulance arrive popped by. He spoke to the police at length as he had known the couple well. I’d met him before in other circumstances. Another neighbour offered to take the cats. Which was fortunate because the animal warden wasn’t being very good at returning telephone calls.

I travelled with Mrs A to the nursing home. The police stayed on at the flat, still waiting for the undertaker. When we arrived,  the care staff and residents at the nursing home who knew her from the respite recognised her. There was a lot of hugging. And more than a few tears. They all knew Mr A too, because even during the respite, he had visited daily. He was a cheerful and affable man who would never pass anyone without a greeting.

It was an out of borough placement so by the time I got back to the locality, I just about made my 4pm visit with minutes to spare. I held it together through that hour – fortunately, it was a joint visit with a colleague. I told her to lead on it.

Today, I go back to the flat and then to Mrs A with some clothes. We hadn’t been able to take any because the position of the body had barred access to the wardrobe.

So just after 5pm yesterday,  having left my desk just before 10am that morning without having been back to the office, I got on the bus home. And I started to cry. Not the full-blown sobbing or even the, I’m ashamed to say, more common stress-induced tears of frustration , but more the occasional tear forming, kind of crying. I wasn’t sure what exactly I was crying for.

The uncertainty and unfairness of life and death I think and of a man and a woman who loved each other so much when neither had any other family, but they had created a relationship from loneliness that had added so much joy to both.

He was a good man. The police found no trace of any family. He never spoke of any family except Mrs A.  The neighbours told me that he was well-loved in the community and that doesn’t surprise me. The coroner was given my details as a contact for Mrs A though, so I can be informed about the autopsy and funeral.

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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