This is why I do it

If you are ‘friends’ with me on Facebook or know me in ‘real life’ you will have heard that I am now General Manager at a charity that runs a day centre for the homeless and vulnerable in the town in which I live.  It’s challenging and hard work but has its rewards.  About a hundred people who have been utterly failed by society come through my doors every day, all of them have at least one of the following: alcohol addiction, drug addiction, gambling addiction, debt, insufficient financial support (even without any of these problems), mental health issues (possibly including psychosis), little or no family connection, learning difficulties, inability through illness to take on employment.

Sometimes people among my relatively wealthy, comfortable and mainly retired friends ask me variations on the same question, which is “is it worth it?”  - in other words, aren’t they all a bit hopeless?  why put all the effort in when they will never change?

The other day one of our clients crossed the road outside our office.  The road is five-lane, three in one direction and two in the other, it’s a major arterial route out of the town centre.  We could tell by the way he was walking that he’d taken too much stuff, probably heroin.  And then, while I happened to be looking at him while talking to another staff member, he fell down in the middle of the road.  Cars screeched to a halt, and I and the other staff member shot out of the building to get to him.

In the minute or so it took us to reach him, some of the motorists had started to help him to the side of the road.  We took over at that point and got him to the little wall outside our building, we sat him down against that so he could lean on the wall.  My colleague ran back in to get a phone (in the hurry we’d left our phones behind) and I waited with him.  He’d torn his fingernail when he fell and blood was dripping everywhere, we know he has either Hep B or Hep C so I was dodging his blood so as not to get infected (note to self: must get my vaccination).  Although he was seated and against the wall, he was still so out of it he kept flopping over to the ground, so I propped him back up again and stuck my leg out to the side for him to lean against.  And I waited for the ambulance to come.

And while I was waiting, I thought it.  I thought the thought.  I thought “One day he’ll die like this, all I am doing now is prolonging the inevitable.”

If you have any compassion at all, it shakes you up when you find you have thought that thought about another human being.

The ambulance came and took him to hospital who helped him get through it.  And the next day he was back, arguing and shouting and being disruptive the way this particular person sometimes is.  But by then I had remembered that about 30% of our volunteers are clients or ex-clients (we have a fabulous client volunteering programme), and some of those used to have alcohol or drug addictions but have straightened themselves out and begun to turn their lives around.  With our help, with the help of other agencies and with considerable tenacity and fortitude of their own.

And this is the point.  When they are down at the very bottom of their existence, falling down in the street, unconscious through substance abuse, you cannot tell by looking at them which of them, in the future, will recover their sense of responsibility and strive to achieve independence.

You cannot tell.

And that is why I try, we try, with every single one.  Why we will not give up on any of them.

My husband gave me a gift that will sustain me for the rest of my life.

He went into the local hospice on Thursday 13 September because for the preceding months he had not been sleeping properly, and his pain was not controlled. Hospices help not only with the end stage of life but with all aspects of palliative care. He had been sleeping in an upright, seated position on the sofa in the living room, usually for only an hour at a time, then he would get up, walk around, take some pain relief, walk around some more until it kicked in, rearrange his many (up to seven) pillows and try to get back to sleep again. We hated sleeping apart, but the pain in his back meant he could not contemplate lying down. We changed our beloved bed in which we had shared so much love and happiness, for one of these fancy adjustable ones, he tried it for two nights and gave up after that. The longer this went on, and it went on for months, the more pain he was in, the less sleep he got, the unhappier we both became. And when your sleep is interrupted to this extent, your capacity to fight your cancer is significantly impaired. So the hospice, with whom we had been discussing the issues, suggested he come in for 2-3 nights so that they could observe him round the clock, adjust his medication and develop a protocol for him to come home with. A great plan.

We went along at the appointed time and were pretty upbeat about what was happening. We walked back and forth a couple of times from the car to the ward without thinking about it. Then we had the admissions process with one of the junior docs. I’m sure she is well-qualified and experienced etc, but her bedside manner was pretty poor. For example, when, in response to one of her questions, he began to say ‘over the course of these 2-3 nights I hope we will…’ she interrupted with ‘You’ll be here a lot longer than that.’  Whoa.

Getting him to even try to lie down was problematic. Looking back, I think he had built up prejudices about this (I thought this at the time) but also I think he was not telling us just how excruciating it was. Anyway, we did get him into a bed for a whole night on 2 October. Yes, nearly three weeks later. That doctor was right, curse it.

In that time various things happened, he rapidly developed oedema in his legs and walking became very difficult. Indeed for a few days he could not walk at all, but one of the docs (not that one) spoke to him very sternly about how he must do his physiotherapy exercises and his mobility improved after that, although he never walked without a frame again. We did get a handle on his pain and developed together some visualisation and relaxation exercises which became important tools in our armoury along with the right mix of medication. He began to sleep for three to four hours at a stretch, sitting upright at first, gradually learning to use a recliner chair, until that momentous night where he not only got into bed but stayed there all night. A fantastic moment.

Little did we know how close he was to death that morning as we celebrated. That was a Wednesday. Over the course of the day he became more and more incoherent and his concentration was deteriorating rapidly. On the Thursday he was admitted to hospital for tests on his kidneys – if the kidneys aren’t cleaning your blood, impurities build up which can affect brain function. This stay in the hospital is a whole saga in itself which I will not recount now, it’s still too distressing. That night the consultant advised that his kidneys were not working but more importantly, neither was his liver. We were at the beginning of the end and the next day we went back to the hospice.

Friday was a tiring day as the transfer was painful and we were all distressed. By that time I was accompanied by his son and daughter. We got him settled and he slept, mostly. He never really spoke out loud again although when he was awake he was listening to us, smiling, nodding, gesticulating and generally joining in. We thought he might die that night and I wouldn’t leave him. It was hard even to go to the loo let alone go elsewhere to sleep. I snoozed in the chair next to him, even that was risky. The next morning came around and he was still with us.

He had loads of visitors that day, friends, workmates, Rotary chums. He engaged with them all although he couldn’t talk and his eyes were closed most of the time. It was a lovely afternoon.

That evening he began to breathe more heavily and had to make more of an effort. He was struggling and fighting against what was happening. I had a number of private chats with him over the course of the day in which I was trying to explain that I didn’t want him to struggle on my account, I didn’t want him to endure the pain unnecessarily, that when he chose to ditch his beautiful but permanently broken body, he would be free, he would be able to see the stars up close, he would know everything that was to be known, he and I were going to be together forever anyway and nothing was going to get in the way of that. And that I was basically going to be OK, I am fundamentally a strong person and with him by my side in his new form I would miss him, oh Lord how I would, but I would find a way to manage. We had spoken about this previously and we had a pact about that, which I referred to.

Around 8 pm I talked to him about this some more, and I was stroking his arm and spontaneously began to do one of the relaxation exercises we had developed. We hadn’t used it for a good week, it was based on one of the classic ones, the beach, you know, ‘you are lying on a beach, you can feel the heat of the sun on your skin…’ but we had tailored it so that it was about a beach we had been to together. And I don’t know why I started doing it again, but I carried on, and while I was saying all this, his breathing changed, I could tell he was doing the visualisation with me, he was telling me that he was actively participating in what I was doing. So I kept going, stroking his arm all the while, and a few minutes later his breathing stopped. We all gathered round, including my sister who had joined us that day, and one of his nurses, we were all with him, and he opened his eyes and looked into mine as he died.

The nurse said that in working through that visualisation with him I had done him an enormous service, but I replied that it was the other way round, he had given me the most valuable gift. He always used to say that when we did things together they never went wrong; I have no doubt he decided to make his move, he chose his moment and he went when I was by his side, working with him. I felt and feel no anger or guilt, he did not experience a death rattle (which he was terrified of), he didn’t face death with a grimace, it was peaceful, chosen by him, steady, calm. And immediately the room was filled with a tangible energy, enveloping me, I could almost hear it roaring. I disintegrated (of course) but he is with me still, holding me together, even if sometimes I can’t find him.

Interaction

Today I woke up determined to contact my lawyers to find out the status of the Professor’s interests in South Africa (I need this information for probate, and have been waiting for months). Mid-morning, not having got round to it, I get a completely unexpected email from his ZA bank giving me the piece of information I need. Coincidence?

Not doing so well

Since New Year I have been feeling very low. The timing is significant, it’s something to do with me living and him dying, me seeing 2013 and him not seeing it. Last year I didn’t like New Year either, we had been in limbo since finding out he had a short life expectancy (Sept 2011), and beginning on our retirement together, travelling, doing stuff, learning stuff, seeing people, and of course his commencing treatment, which was all scheduled to happen in 2012. So New Year’s Eve, 31 Dec 2011, was a miserable night because I could not stop the inevitable beginning of the year in which things were going to get difficult. This year, once again I could not stop time marching on without him being here.

I miss him more than ever, and I cherish time with him and my memories almost to the point of obsession. I go to work every day, this is a struggle but I do go, but the deal is, I will come home in the evening and be alone in my fastness, free to think about him, remember him, miss him, yearn for him.

I’m not really eating properly, but I’m getting better. That is, I’m generally eating only two meals a day (my consultant says that’s OK tho’ ) and I often don’t cook in the evening. This results in either me eating something cold or going out to eat. But when I do cook, I enjoy it, and I enjoy eating what I’ve made, and I’m making efforts to cook more.

I’m also not sleeping properly, which is more of a problem. I have probably the most comfortable bed in the world, and I lie there in physical bliss, but I stay awake. I have my photos of him next to me, and I burn a nightlight every night (haven’t missed one). I frequently don’t drop off until 4 or 5am, then I’m up again at 7.30 or 8. So when I get home in the evening I fall asleep in my chair, either at about 7pm, which complicates the evening meal situation still further, or at about 10pm, which perpetuates the cycle because I wake up after midnight and don’t even want to go to bed until 2am or later.

I have discovered one thing I strongly dislike, which is people saying “it will take time.” I know they mean well, but do they think I’m stupid? It doesn’t help me to tell me that, it’s not like I don’t realise that over the next months and years my feelings will change. I know I’m only 4.5 months into it, I know there’s a long way to go – the rest of my life actually. It does not comfort me to be told that I have all this time ahead of me without him. Someone told me it will get better. Perhaps it will. That doesn’t help me now.

Several people have expressed support, empathaising with me because they have lost a parent. One person in particular has been very thoughtful and helpful. The others seem to assume they know what I feel. I don’t dispute their grief, its intensity, its unpredictability, how they are/were debilitated by it. But losing a parent is not the same as losing a lover, a kindred spirit, a husband, a partner, your right arm, your right eye, your heart.

Since New Year I find I can’t see into the future, can’t imagine what my life will be like, how it will develop. He gave me back my intellectual curiosity, my self-confidence, my love of life. Without him it’s hard to use and enjoy these things.

I miss him with every fibre of my being.

His passing

So when he actually died, I’d spent three days in suspended animation, just being with him, arguing on his behalf, caring for him, talking with him, interpreting for him (he was largely incoherent for those days, particularly the last two), because of all that it was as though it was inevitable, and it happened, how can I say it, it breaks my heart to say it, it was almost like it was according to plan.  The most monstrous and unacceptable and unimaginable outcome had become the only reality, the last remaining question was how difficult would it be for him

Shooting star, and other interactions

On October 7, about 24 hours after the Professor died, I was sitting in my living room next to the patio doors (ranchsliders), from which I can see a portion of the easterly sky.  And across it shot an enormous star, it was massive and in view for the whole distance across the part of the sky I could see.  More like a comet.   I just felt like the Professor was waving at me and showing me the kinds of things he can do now.  I waved back.

Mentioned this to a friend whose husband had also seen the shooting star.

Not long after that I was facebooking and saw that a friend reported a town-wide power cut for a few minutes in a town down the road, at the same moment as when the Professor died.  Either his aim was off or it was unrelated…which?

Last weekend Amazon sent me one of their emails recommending books to me, and top of the list was the Professor’s main text book.  I have never bought any books from Amazon in his field or even in management science generally, yet there it was.  No reason for them to tag me as interested in that book, yet there it was.  A message to get his royalties sorted out I think, which I am duly doing.  I do what I’m told sometimes.

Today I was in the conservatory looking out into the garden and suddenly a cloud of leaves blew off our old oak towards me and they fell all around the conservatory, I was looking up through the glass into the cloud of leaves.  There didn’t seem to be any wind on any of the other trees or plants.  Just a cloud of leaves around me.

I cannot express how much I miss him.

Five stages of grief

It’s been pretty well accepted wisdom for some time that there are five stages of grief.  Developed in the sixties through work with terminally ill patients, this model was supposed to describe the process by which people come to terms with the news that they have a limited life expectancy.  The model was subsequently applied to the bereaved, and further to people who suffer other forms of grief, eg redundancy, marital breakup etc.

I have to say I am struggling to make it fit me at the moment.  There is tremendous risk in making this statement, it’s “early days,”  I may look back on this time and laugh at the denial I’m in now.  And yet I really can’t make it work. I’ve believed in the model for so long it is frustrating not to be able to use it.  I see others have challenged it and I think I do too, at least for the bereaved.  I think it could probably work for some of the other application scenarios.

They say the five stages can happen in any order and may repeat or be omitted.  So let’s look at all of them:

Denial:  I don’t deny that the Professor has died, nor that he won’t come back, nor that my life has irrevokably changed as a result, nor that I miss him, or need him.  How can I deny this?  it’s happened, it’s a matter of public record, I was there when it happened, there were other people there too.  I know I will never see him laugh again, or hear him argue with me, and I know his beautiful face and body no longer exist except in photographs and memory.

Anger:  I don’t think I’m angry.  Who can I be angry with?  Him for dying?  he wanted it even less than I, if that’s possible.  I can’t blame him, he did nothing wrong.  His medical team?  they didn’t bring about his death, most of them did everything they could for him.  The cancer caused it, can I be angry with a cancer?  I don’t know how.   I would like to be angry.  I sometimes get a lot done through anger, it stirs me up to write letters that need to be written or make phone calls or rearrange accounts or whatever it is that needs to be done.  But there is nothing to do here, and nothing to be angry about.

Bargaining: This one is the most ridiculous of  them all.  Just who can I bargain with?  And what bargain can I strike?  There is only one thing I want, and that is to have him back, laughing, joking, teasing, arguing, snoring, loving me, loving his family, his house, his garden, with all his energy and passion and intelligence.  This cannot happen, and there is nothing else I want.

I often say to myself “I’d give my right arm to have him back” or “I’d give every penny I have to have him back.”  And these statements are true.  I would.  But there is no person or agency on earth that can achieve this, and even if there were, this is the thing, what would they want with my right arm, or all my money, if they had the power to bring people back from the dead?  They wouldn’t need anything I could give.  So they won’t want to bargain with me anyway.

Some fundamentalists might say that Satan might make me an offer I can’t refuse.  I just can’t picture that I’m afraid, it doesn’t fit my cosmology.  Is that denial?

Depression: I don’t believe I’m depressed.  I don’t hide under the duvet and hope the world will go away.  I  know that feeling, and I don’t feel it right now.  I don’t feel like I’m under or inside an impenetrable cloud.  I can empathise with others without being prompted.  Ah, but they say the depression of grief isn’t clinical depression anyway (although that can happen) – it’s more “feeling sad.”  If so that is just a cop-out – of course bereaved people feel sad, you haven’t designed a model if you say so.

Acceptance:  I accept that he has died, but I will never accept that I am happy about it.  Can it be that I am in acceptance after only five weeks?  Without going through any of the other stages?  I don’t believe it. Is that denial?