Tag Archives: caring

Stages

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February is always the most humid month in Sydney; days and nights enervate. I think of those who suffer with depression and wonder if these humid nights are a greater burden. I am so thankful for my ceiling fan.

As I said last time, my sense of loss is no longer as painful; grief has modulated into a very specific loneliness for which no company or friendship can quite provide adequate balm. Having said that, the proposition of nights alone is often daunting and much easier in the company of loved ones.

In looking back over my notes on this journey, I spent a bit of time looking at the “Stages of Grief” as outlined by Elizabeth Kübler-Ross in her book, On Death and Dying. I thought it would be pertinent to see how much of my last seven months has mirrored this framework. It should be said that these are not strict, chronological stages; some may be revisited, for example, Stage 4, which is depression.

 

Stage 1 – Denial: The shock of losing a loved one usually hurls us into denial, a state that helps us to survive the loss. It is not so much a denial of what has happened as numbness to the impact of what has happened. In Kübler-Ross’ words, “There is a grace in denial.” That grace allows us to regulate – pace – our feelings of grief; we simply walk, or stumble, through the basic commitments of each day: getting up, showering, having breakfast, etc. This disconnection, if handled properly, will see us gradually begin to ask questions in order to begin the healing process.

For me this process was very real. I could not really write or do much else other than go through the motions, where numbness ruled, apart from the occasional electric jolt when a thought or association would shock into life the monster of grief.

Stage 2 – Anger: Apparently this is the stage where one recognises that denial can’t continue and the questions begin, such as, “Why did this happen to me? Who is to blame?”

I can’t recall being angry. Although I had anticipated Ngaire’s death for many years, hope had arisen in the form of a lung-transplant. When she died, possibly within days of lungs becoming available, the sudden shift from hope to hope shattered was staggering in its finality, like a guillotine-blade through the soul. I had, of course, considered that Ngaire might die; we had to face that very real possibility, as part of the process in preparation for a transplant, not to mention that for her to have a terminal condition was a perpetual reminder of her potentially imminent mortality.

I actually felt that, if she died, I would be angry at God for callously allowing us to hope, only to rob us at the final hurdle (especially after so many hurdles that dear Ngaire had already jumped). However, I wasn’t angry; instead, in the midst of the pain I felt a great peace and an abiding understanding that God is good. I actually don’t get that.

Immediately I hear my own voice saying that this is just another form of denial. Maybe. It could be that this whole process of the last seven months has just been a little padded cell in which I have put myself, protecting that self from hard truth – an extension of denial that is shaded and coloured by the need to fool myself that God is in control and that I am engaging truly in grief and loss; or maybe there is another reality.

Maybe there is a reality – the real reality – that says that I am not fooling myself. I quote from my post-Christmas blog: “Here is the point I grasp: we are all terminal; our time here is finite, whether it be for two years, fifty-six years or a hundred years. In the vast scope of eternity, our time here is less than a breath; too short to waste on self-importance and anything less than what is real.”

Maybe God is good and there is an eternal perspective that exists well outside the confines of my egocentricity, a perspective in which the oneness of creation is paramount and is not particularly ruffled by my need to have answers. I have no other explanation for why I mostly have this peace.

Stage 3 – Bargaining: I think this is more an issue for the one who him/herself has been given a death sentence. The individual bargains with the Higher Being for an extension in years, in exchange for a reformed lifestyle, or some such. I do remember in passing, a comment that I made to Ngaire, after she went, that I would give everything I had to hold her and kiss her and laugh with her one more time.

Stage 4 – Depression: It is during this stage that the grieving person begins to understand the certainty of death and may ask questions like, “My loved one has gone and is not coming back. What is the point in going on?” I recall my father being in depression for an extended period after the death of my mother, despite our best efforts to stand with him and reintroduce him to relationship with his grandchildren after years of being “locked-in” as carer for a wife with Alzheimer’s. One night, as he was leaving our house, having had a great night with us all, he sat in his car, in tears, before he left, and said to me, “I guess I have realised that a lot of people would be very sad, if I wasn’t here.”

He needed to understand, as do we all, that we have value in the lives of others. One of the most significant things that have given me the impetus to work through this whole painful process is that I know that I have almost immeasurable value in the lives of my boys.

I have referred in my blogs to the dark places that I have visited over the last year; it has only been in the last month or so that the frequency of these visits has diminished. Nonetheless, it sometimes doesn’t take much. Just a couple of weeks ago, as I was going to sleep, my mind went to one of the few times that Ngaire cried in fear that she might die; I remembered her saying through her tears, “I don’t want to die….”. I hadn’t even thought of that before, but instantly the rug was pulled out from under my soul, and depression and sleeplessness was my lot for the rest of the night.

According to Kübler-Ross, depression could be referred to as the dress rehearsal for the “aftermath”; feeling sadness, regret, fear and uncertainty is natural at this stage. These emotions show a beginning of acceptance of the situation.

Stage 5 – Acceptance: I guess this is pretty much where I am now. It’s the understanding and attitude of heart that there is a future, and that everything is going to be OK. It is simply what it says:  acceptance of the situation.

Now a number of my friends are facing very solid journeys themselves. One thing that these Stages of Grief don’t account for is that, for those of us who recognise a connection with God, there is always an underlying hope, no matter how hidden it may seem at times.

God’s way is the way of love. His way may include healing; I know more than one person who has been miraculously healed of deadly types of cancer. But, to hark back to a couple of blogs ago, the love of God, in which we trust, is transcendent; that is why we have an underlying hope, because it is not only good for this life but also beyond.

“Neither death, nor life…the present nor the future…nor anything else in all creation can separate us from the love of God…”* and love means hope.

* Romans 8: 38-39

Pictures

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I was having coffee with some friends, when one said to me, “I like the beard; you should keep it.”

I hadn’t consciously been working on a beard. When I got home, I went to check it out. As I stood before the bathroom mirror, I realised that I hadn’t spent any time looking at my face recently, almost as if I had some kind of hesitance in engaging the eyes, for fear of what I might see there. I had become a little unkempt, though not too bad – kind of like a front lawn that had grown a little too long and with edges in need of a trim. Normally, I would keep things under control, but I had clearly been preoccupied with something. I say “something” because it’s not what you might think.

While my loss of Ngaire does account for a huge part of my thought life in a day, I am still living life: going to work, cooking meals, washing clothes, seeing friends, laughing and making small talk. What the unkempt man in the mirror underlined was that normal had, in many instances, become something that I had to make a conscious decision to engage, e.g. “I think I’ll make dinner now”, or “maybe I should have a shower before I go to work.”  It is almost as if the chip that looks after routine has a malfunction and that part of my brain is floating in cyberspace somewhere – preoccupied with floating! Maybe that’s why the unexpected has such a sudden impact on me emotionally.

I’ve talked about this before; it’s common to all who grieve and understood by most. We hold it together most of the time as we continue the job of rebuilding and working with the new shape of our lives. Then something appears – usually entering through our senses, catching us unawares – that folds space and time so that we are instantly transported back by a smell, a picture, or a sound. There have been many such moments over the last four months but the other day, one in particular showed me another aspect of this journey.

Most of us have a presence on Facebook; for those who don’t, I hope you will bear with me. Ngaire still has a presence there and I see no reason why that should ever change. I had actually made a decision not to visit her Facebook pages yet, in the same way that I have decided not to sort through her clothes, personal items, etc. It’s too confronting, too painful still; but I know that the time will come.

Remy, my precious twenty year-old son, who is living overseas, did go to her Facebook pages, to look through the pictures that she had put up there, many of which were tagged with my name. When Remy “liked” them, or made a comment about them, I was notified on my phone, and unwittingly drawn into reading her comments about pictures of me and of our family.

Ngaire nearly always had something good or encouraging to say about everyone she knew. That was one of the things that she did well, but when I read the comments of love and adoration that she had for me in these pictures, I was undone. In instance after instance, I had reinforced to me the one central, glorious, beautiful thing that was gone from my life – her love for me.

As stupid as it sounds, I hadn’t fully realised that it’s not just her presence, her touch, conversation, smile, laughter, or any number of things that relate to her being present that I miss the most; but the love that captivated me, helped sustain me and made me feel that I could do almost anything, was gone – relegated to the past – and the loss is palpable.

I know that there are those who will say that her love lives on in me and the boys and in the hearts of those whom she loved; I understand that sentiment and it is true to a point, but the active adoration with which she endowed me, that was central to the peace of my heart and my home and helped shore up my character, is no longer a vibrant life-force in my world – in my boys’ world. This is loss and, as I ponder, it is also key to understanding the rebuilding. Now that I see the keystone is gone, again I sit pondering the precarious nature of this house in which I dwell.

If only we realised how central love is; it is the stuff of life. Without it, we merely go through the motions. It is that which holds life together, makes the weak strong and the poor, rich.

I am deeply grateful for the love of my boys, my friends and my family. Without that, I can’t think of one reason why a person would want to keep on living. With it, I have the mortar to rebuild.

Rehearsal

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Ngaire’s battle with lung disease stretched out over a period of more than twenty years – over one third of her life; and I had the privilege of walking with her through it all. For the first seven there was hope that it may resolve itself, but thirteen years ago, the diagnosis turned sinister – to pulmonary fibrosis – which is always terminal.

Over those years, my role was to love, support, care for, encourage and enable her to walk the path towards wholeness. We looked for healing, from the supernatural to the intensely natural: prayer, whole foods, herbal remedies, naturopathy and everything in-between. Because the prognosis was terminal – usually, at best three to four years – perhaps, in retrospect, there was a measure of healing in some of those. After one visit to Bethel Church in California in 2005, where Ngaire was prayed for, she was completely symptom-free for eighteen months. Two subsequent visits, however, yielded no such fruit physically. All of that is to help paint the picture that this was a long journey, full in many varied and challenging ways.

One of the things that we learnt early on in the process was that the medical profession wasn’t very good at giving you bad news. In many ways, they were often quite brutal and many times we found ourselves clawing our way out of a pit of despair (I should say, however, that Ngaire’s doctor for the last three years was an exception to this experience; we found him hopeful and supportive, even when things went sour).

I found myself needing to be Mr Positive because of this, always pointing the way to the positive aspects, always trying to provide her with an anchor point for hope. The reason for this is the real help that hope provides, emotionally, psychologically and physically. The alternative – despair – soon carves a slippery slope to destruction in the often desperate heart of one with a terminal sentence. Even in her last thirty-six hours, Ngaire hoped and believed that after her sedation and intubation, she would wake with new lungs from a transplant. I am relieved that that was in her heart rather than hopelessness and despair.

Of course, my own personal journey was different. I purposed to maintain her hope, but would, myself, at times, visit dark places, writing of hopelessness and the feeling that my days were a rehearsal for what life would be like without her. This would happen particularly when she was convalescing elsewhere or on one of her several hospital visits. Without her presence in the house, the whispers would often be that my actions of preparing meals, doing washing and ironing, making lunches, organising cleaning rosters amongst the boys, were all practice for the future when she would no longer be with us.

I couldn’t talk to her about this, which is more difficult than I can tell. In almost everything, Ngaire and I would seek each other’s opinions, thoughts and feelings. I think the word that I used in an earlier blog was symbiotic. Since we remarried in 1991(for those of you who don’t know, we were separated and divorced for five years – that’s another blog), our marriage was totally different. We had almost a singularity in our approaches to things. We would use ineffectual words like “team” and “agreement” but it was much more. I cannot tell how many hundreds of times I would pick up the phone to call her and she would be calling me, and vice versa; we would often be jointly thinking of the same things or people and begin to speak about them together at the same time.

Much of this kind of thing is not uncommon in close marriages, but we had fought some hard-won battles to bring us to where we were. Part of our remarriage vows said, “I give my life to you as an open book”. Now, here I was with all of these feelings of hopelessness and despair, and I was unable to tell her, because I knew that it would be destructive in her physical battle. One of us needed to be paddling the boat, and that was usually me. I have learnt that this is often what happens to a carer. I saw it in my own father as he took care of my mother through many years of Alzheimer’s. Despite my urging he found it difficult to open up about his struggles – which were deeply evident in his demeanour – and mostly kept it bottled-up, to his and our great detriment; he died shortly after mum. However, I am immeasurably grateful for those few friends in whom I could entrust the deep, dark things, who supported, prayed and help strengthen me for the road.

So where does faith sit in all of this?

Over the course of Ngaire’s illness, faith changed shape enormously. In fact, to enlarge the metaphor, it became an almost unrecognisable monster at times, as we waded through the mud of “unlearning” what faith is.

As an aside, I am bemused by atheists, some of whom are my friends, who in their own “evangelism” presume that I, or others who think similarly, have not grappled substantially with these issues of the existence of God. It is arrogance to presume this and flawed thinking to not allow another possibility. What is the difference between that and a rabidly fundamentalist Christian? I digress.

Let me tell you some of the things that I believe I have discovered about faith:

  1. It is not about me having an expected outcome.
  2. It does not dictate that I must badger God until he gives me what I want.
  3. It is not about having an expectation that everything will be peachy.
  4. God is far bigger than any box that I may create for him or indeed, any understanding to which I may come.
  5. God can do things any way he likes.
  6. Suffering is an integral part of the journey to joy.
  7. It is O.K. to doubt.
  8. Faith is purified more by unanswered prayers than answered ones.
  9. Yes, I am loved.

I was talking earlier about Ngaire’s and my closeness. I don’t want to give the impression that it was all sweetness and light. To reach the gold you have to dig the dirt; at times we could be downright abrasive with each other: I have some memorable journal entries! But, generally….mostly…..entirely…we were deeply in love.

I wrote this about eighteen months ago, after we returned from California; Ngaire had taken a downturn and was staying at our friend, Moira’s, place.

It is the Oneness

Unwell, she convalesced in another place

Alone, deep in the night,

I stirred beside her, felt her warmth

And the air move past my face from her breath,

Tenderly, we enmeshed the arms and legs

Of our souls in gentle embrace,

And communed.

From the other possibilities of mind-time,

I called myself to reason, lying suspended,

Sliding around consciousness.

That reason again challenged life

That this is a dream,

That she is not here,

That I am alone.

I turned my back and swung my feet to the floor,

Melancholy in such sudden solitude,

Until the voice of resonance

Within informed me,

It is the oneness.