|"The horse on the table"|
It was only comparatively recently that a friend wrote to me and said, "Have you ever read that story about the horse on the table?"
I had to admit that I hadn't.
I went searching for it online and found it. It's only a couple of book pages in length, but the intent of the story can be condensed much further. Reading it will set the scene fully, but here's the gist of it.
The horse on the table is a rather more specific form of the 'elephant in the room' – the thing strongly affecting people's lives that is very important but no-one can bear to talk about.
In this case, it's referring to the impending death of the person being visited. It sits on the table right between the visitor and the person with the illness. Very often, no-one knows how to deal with it, because it's not going to go away. It's just there where it doesn't belong. Like a horse between the salt and pepper shakers.
The problem is that sometimes it's X, the ill person, who doesn't want to confront it, and at other times Y, the guest, prefers not to. Both might not want to. Both may want to, but are scared the other does not.
So more often than not, the horse sits there as the visit goes on, looming larger and larger as long as it doesn't get a mention.
I've had this sort of experience, but much depends on my visitor[s] and my relationship with them. I surely don't want to spend the entire time talking about my illness, and I'm certain they don't want it to be the sole topic of conversation. I do want to know what is going on in my visitors' lives, and the wonderful gossip they have up their sleeve to share with me.
I have no qualms in talking about details of my illness or, for that matter, my impending death, with detachment that makes some people shrink in horror. With some people I can even joke about it, up to a point – sometimes in a macabre way that would unsettle others.
Tracey and I have no horse on the table. What's happening to me physically and intellectually as this disease progresses affects us to the core and there's simply no room for equus mortis.
The only visit that's unsatisfactory is the one where we're trapped in this groove of talking about inconsequential things when, after the best part of an hour, no true contact has been made. I haven't even been asked how I feel. That question's too much like inviting the horse to loom up with a quizzical look in its eye.
By the end of the visit I end up knowing how painting their back room is going, the antics of their neighbour I wouldn't know from Adam, and the potholes in the street down the road, but they have no better idea where I'm at than they had when they arrived. Of course, they may gather a good deal about me without asking, from the shakiness of my arm and the difficulty I have to sit down and the other observable points of deterioration but....
It's nice to be asked. Watto wouldn't hesitate, so don't you.
The horse is on the table and always will be, but don't be afraid of it. It won't eat you, I promise. And you'll feel all the better for asking.
'My son, it is the horse on the dining-room table. It is a horse that visits every house and sits on every dining-room table - the tables of the rich and of the poor, of the simple and of the wise. This horse just sits there, but its presence makes you wish to leave without speaking of it. If you leave, you will always fear the presence of the horse. When it sits on your table, you will wish to speak of it, but you may not be able to.–––
'However, if you speak about the horse, then you will find that others can also speak about the horse - most others, at least, if you are gentle and kind as you speak. The horse will remain on the dining-room table, but you will not be so distraught. You will enjoy your repast, and you will enjoy the company of the host and hostess. Or, if it is your table, you will enjoy the presence of your guests. You cannot make magic to have the horse disappear, but you can speak of the horse and thereby render it less powerful.'*
That horse - ah me...ReplyDelete
I feel a need to dance with the horse. To balance the confronting with the banal. A preponderance of either feels wrong to me and I sense to you.
That, quite bluntly, leads me to your horse which I have never addressed. When my time comes I want to do it as well, as knowingly and as honestly as you. You are probably sick of hearing it but I admire you. I have been a little, and appropriately, on the sidelines of your conversations with Ros but the day you go will be a watershed in both our lives.
Our 80 year old neighbour died recently. A much loved man - 300 at his funeral. A week or so before we were in his yard and the visitors kept rolling in. We knew they were there to say goodbye but the horse was in the next door paddock. "Fit as a Mallee bull" was his reply when someone inquired after his health. Those people (that generation?) quite definitely seemed to want that balance. In my mind it matched the priest's assurances that he was "only sleeping" and that we'd be seeing him soon.
In case I don't have another opportunity to say it, farewell Denis. To be macabre, sleep well.
Beautiful posting. Dave. I thank you and I want to place your [and Ros's] horse on the table in case it's not obvious to others. Dave has MS, and Ros and for many years he managed with appropriate drugs to control [to an extent] the relentless march of the disease, but that drug regime has come to an end.Delete
So he is in circumstances parallel in many ways to mine, although further advanced in physical deterioration than I. Ros is his primary carer in the same loving way Tracey is for me, and he and I are equally fortunate to have an extraordinary person making the sacrifices they have done and continue to do for us.
The four of us have never met but I guess I feel this strong bond, and I read what they write with special interest. This isn't just in the past for us; it's our present and future. Their story is on the table and I am humbled by what I feel is undeserved praise. Like Dave, I know where our immeasurable gratitude and love lie.
PS Feel free to correct any of this, Dave, and let me add that I appreciate something of how hard to type [physically] it is for you.
This has been one of, perhaps the most, significant stories in my life. I've loved to read here, how it intersects your experience. As always, so kindly, so eloquently written.ReplyDelete
I was introduced to this story in 2003 when I was studying at the Monash Grief and Bereavement Centre. The way I remember it was that the horse (death and dying) was sitting there on the dining room table, with guests awkwardly trying to avoid it as they ate and made small talk. When it is spoken of, then it is likely to gently get up, get off the table, and sit quietly in the corner of the room. It doesn't go away. It is still there.
In speaking of the unspeakable (death and dying) - the horse will take a less prominent place in the minds and hearts of the those gathered. And so other things may take prominence in the conversation.
You and Tracey have cast such a soft but clear, candid and respectful light on this often dark and difficult part of living. Being born, entering this life, is (probably always) hard, shocking, painful and terrifying to the human being. Likewise, is dying, leaving this life. But there can be light, learning and love in both. You've (pl) managed to balance both with great finesse.
As Dave has just said, you are probably sick of hearing this Denis, but I'm going to say it anyway: I can't thank you enough. xx
Ros: to do justice to your response I'd need to come back after writing the above to Dave. The carer is always second in the queue! I thank you – and it was you who mentioned the horse to me first, now I know – for your calm and calming presence in our lives, these thousands of kms apart.Delete
For the fine stories below, ditto if/when I feel the desire to comment – I thank you and say... later.... The spirit is willing... you understand.
Yes. Here I go doing a 'me' story again: when my mum was going through her long slow dying, we often spoke of it -she had even written out her funeral programme. We'd talk about who I had to contact, she wondered if she'd meet her mum and dad again after death,if there were angels -that sort of thing. I would reassure her that I would be okay and that everyone's lives were on track and doing fine -she could leave without worry about us. I'd say that I loved her and would miss her. We loved 'September Song" -"these few precious days, I'll spend with you.." But as her death drew nearer, she lost some of her mental capability and seemed to forget even that she was so old. When I tried to speak to her about death one day (in case she wanted to talk about it), she drew a sharp breath, as if it was nothing to do with her and it was a shock that I had raised the issue. So I didn't, after that. But the day she died, she looked at me in anguish as I was leaving the room, and later I worried that she was silently pleading me to stay, though friends suggested it was more a sad knowing she would see me no more (I did not get back there in time that night -she had gone by 5 minutes.) Now -did she know, or didn't she? That is what I will always wonder. She may have wished to spare me, especially as her generation was so stoic.But I didn't want her to be alone (though some very dear nurses were with her).ReplyDelete
Her sister, when she was dying, had not known she was, or not wanted to know (she had lymphoma but thought she was recovering). But someone ,a nurse perhaps, had told her or mentioned her death in her hearing ,and she was terribly frightened then. Mum was so angry that someone had told her sister this, when she could have died in peace, unknowingly (she was in hospital and quite heavily drugged).
Is this relevant? Perhaps I am just unloading my recent experience.
With you Denis, it is not necessary to pretend. Yet many people have little or no experience of death or even of serious illness (amazingly). It's alien to them. They haven't thought about it. It's too scary, and anyway, 'unreal'. I won't go on. Thanks again for yet another chance to talk about what matters, so vitally, to us all. You are a precious friend to us all - as we are to you, I know, because then you "get back what you give:)" A little.
I think it's fine to share this, as you aren't giving us a problem and asking us to solve it. The whole thread has revealed layer upon layer of complexity that I never expected it to.Delete
Each death is unique for the loving people around. We don't know what we'll really feel, any of us, till it's right there. That in itself I find makes the discussion worthwhile, however discomforting – perhaps upsetting – it is for some readers.
We all have our stories, and some need to explore them in retrospect. No matter what happens, life goes forward and never stops. Only in our delusions does it do anything else.
I guess that sounds banal. But we constantly fool ourselves by denying it.
If only the horse were on a table, Dennis, but it's not. The horse is sitting in cyberspace and cyberspace is a new way of communicating to which most of us are only just becoming accustomed. Believe me, so often have I been aware of the horse and have tried to address it. With your help, to some extent, we have succeeded. But it brings us back to one of your oft-visited subjects - language.ReplyDelete
There are nuances, gestures, eye contact,touching and a whole range of ways in which we communicate which complement but go far beyond the typewritten word. Your Internet friends cannot feel their way with you, gradually and sensitively, to say what is important. The feeling and desire to communicate is there on both sides but the horse seems unapproachable through a keyboard. Do we really want to commit our thoughts, our questions, our selves, your self, to a bleak, blunt and non-erasable conversation?
Julie - the one who shares my life, not Julie M - gets round this by using email. At least a conversation can be private.
You see, the things I would like to discuss with you are metaphysical and largely for my own benefit. I asked you from where you drew your strength, and you said 'Tracey'. But where, after a lifetime involving observation, education, keen insight, considerable humanity and comparative religion, do you come out on the nature of reality, the meaning of the universe and all that?
In years, I am ahead of you; in mortality not far behind. I have no religious beliefs, and have developed my own philosophy - a blend of Buddhism, science, speculation and wishful thinking. I would love to know what, looking back, you have made of it all.
Last month a very old friend of mine died - we had been young men together in Africa in the army and, with our wives, had maintained a lifetime friendship. Never thought about it, but we all expected to live forever. Then I got an email from his wife - Tony had suddenly been diagnosed with an advanced cancer and given only a very short time to live. He was too weak to write but dictated an email to me, saying 'goodbye old friend'. Somehow, profoundly, that joined us, made sense, made it all worthwhile. Four days later Tony was dead.
The horse is not only present in my computer but is asking: Will my conversation help or hurt you Dennis. Will it put you under pressure. Will it cause you stress, upset Tracey, embarrass other friends or, for that matter, me.
So, there it is. If only it were a table between us all.
Love to you both.
Several years ago my good friend, Anne, discovered a lump on her breast. She didn't tell anyone about it. At that time, her mother was just about to have an operation for bowel cancer. One day Anne said to me in tears that her life was over. She was only 60. I thought she was referring to the impact on her of her mother's illness, which had an excellent prognosis. I replied that her life was certainly not over. I just thought she was overwhelmed by her mother's situation.Delete
About 8 years later, I received a phone call from Anne's mother telling me that Anne had advanced cancer and would soon die. She told me that no one knew about this until it was obvious. I was in a state of shock and immediately drove down to the Central Coast to see Anne.
During the few days we stayed there, it was obvious that Anne had long ago come to terms with her own death, perhaps the day she discovered the lump. She'd gone on to do all the things she'd dreamt of and then returned home to be nursed by her mother and her twin sister.
At one point I asked Anne if she had any plans if the situation grew too difficult. She said she had set up her truck in the garage with the exhaust pipe connected to the cabin. I replied that she would probably be too sick to even get to the garage. Could she ask the doctor for sleeping pills.
At another point, I said to her, "You're going on a big adventure." She gave me a big smile.
There was no gorilla in the room with Anne, but she'd had 8 years to deal with this truth. Certainly in the beginning and for several years after she wasn't prepared to discuss her impending death. It was up to her to decide when to talk about it. I certainly would never have brought it up first had I known what was happening to her.
We all see the gorilla in the room, but wait for the cues to admit it. In the beginning of all this, over three years ago, I said too much. Now perhaps I don't say enough. One of the big mistakes in our culture is that we never talk about death until it is right in front of us, and then we still don't because we don't know how. It's a huge taboo, perhaps because science tells us that it's the end of it all, and thus, terrified of annhilation, we cling to life.
The gorilla in the room comes from an experiment in which people were shown a film of a ball game. They were asked to count the number of times the ball hit the ground or was passed to another player or something. About 1/3 of the viewers were so intent on counting that they failed to notice the man in the gorilla suit walk into the middle of the film and out again.
Denis, I feel so deeply that you are about to go on a big adventure. To me it's not dying, but saying good-bye that's the excruciatingly impossible part. When Carl and I attending the screening of Into the Woods, at the very end of the film, you'd written "Farewell". I'm in tears now reliving how I felt in that moment.
There is also another horse. Sometimes a whole herd of them; the ones that people *do* want to talk about. But not to the person affected by the horse. No. They want to talk about how *they* are affected by it...to people like me.ReplyDelete
It is when I am out for a short time in Coles or the chemist. 'My' time when, for a period often measured in minutes, I am actually trying to think about something unrelated to illness and death.
Why do people feel the need to stop me in the supermarket or the street and bombard me with multiple stories about other people they know who are dying, have died, could die, and the intricate details of their medical conditions.
From my own pit of despair I still hear myself saying things like "Oh how terrible for you..." in relation to someone's brother's best friend's girlfriend who is ill...while listening to them telling my how upset they are about it.
I have to say my cup feels pretty full already. I honestly don't need to be bogged down with the details about the tumour your neighbour two doors down has.
Yes, of course I am concerned for people we actually know, people who are our friends, who are in pain because they are ill or have parents or children that are ill, and I definitely want to know how they are travelling.
But the endless stories about people we don't know from Adam. Well. Excuse me while I slash my own wrists.
In terms of our very own horse. Personally, if you are going to talk about the horse, I'd much rather that it is OUR horse you are talking about.
Tracey said to me just now, "I looked back over the responses after posting mine and had the thought that someone might get the idea I was referring to what people had written or might want to write in their response. Of course I wasn't. I was referring to what people say to me in Coles and when we're sitting here round the table."Delete
I said I thought any readers would understand that. But there's nothing wrong in making it doubly clear that it's about the precious minutes face-to-face, not stories here that are obviously relevant to my posting.
This response is to your piece here, Tracey. I apologise in advance that it is a little off topic (horses and tables) but I selfishly grab this opportunity to talk about this with you.Delete
You have perfectly written, here, a scene from my own life which has occurred with accelerating crescendo over the past 16 years. Not exactly, of course. But your words and meaning resonate in my daily experience. Thank you for writing them.
I wonder if you also are beset by people ambushing you, out of Denis's hearing, to tell you how sad they feel about his illness? And then they go on to ask YOU...not him....how he is, what's happening, what's likely to happen...and how very unfair it all is, etc, etc.
The thing is, it is hard enough to deal with my own long-term, on-going and relentless grief about David's chronic illness (secondary-progressive MS), and the impact on our lives, without having to also fairly constantly comfort and reassure others about his declining health. Like Denis is (I've come to understand), Dave is pretty universally respected, admired and loved. Family, friends, colleagues, the community – all, therefore, want to save him from the impact of their grief and the terror of impending losing of him. They seem to feel no compunction about sharing their grief with me. On top of all that, often well-intended folk will give me, not Dave, the latest “cure” or “alternative treatment” to eliminate MS from his life.
In other words, sometimes I feel like I'm not just David's Carer - I feel I am caring for everyone who loves him as well. Mostly I manage, but sometimes (often?) it is too much. I guess the question is - and I certainly am not looking for sympathy - who takes care of the Carer? Even if that means simply not to over-burden the Carer with grief that's not her/his own?
As always, please don't feel obliged to respond. What I've written can be regarded as a rhetorical question if need be.
Love to you both. xx
I can't tell you how many cures there are for this type of terminal brain tumour, with ring-bound literature left on the doorstep, not to mention all the in-person advice and the emails about the latest and greatest thing.
There are apparently so many ways to beat this that it must be a MIRACLE that not a single (correctly diagnosed from the outset) person has ever been cured to date. Seriously, knowing what I do now about this tumour, I would spend my last days eating Tim Tams, not sucking down pulverised bovine cartilage.
And yes, I sometimes feel like things are very skewed when I have to be the one to comfort other people and provide the tissues when it is MY husband that is dying. People bursting into tears in the street is actually plain unhelpful.
I have a vision of Den's funeral, where there is someone else sobbing loudly and dramatically while I am trying desperately to hold it together. I will seriously want to deck them.
People say such hopeless things. Someone exclaimed with obvious disapproval only last week that I had to 'Think Positive!!!' when I referred to the possibility of Denis being too immobile in the future to attend a certain event. It is often too difficult for people to grasp that it is much easier to plan for reality than live in some sort of 'positive' fantasy.
I have had some of the most well-meaning people say the most inappropriate things to me. They wouldn't have a clue how insensitive they are and would be horrified by my feelings about their artless comments.
Wow. Maybe I need my own blog instead of unloading on here LOL!
To your question.
A nurse recently told me that they recommend that the spouse of a terminal patient grieves for their partner before the end. That it was healthy. I looked at her and asked 'What about when you have been grieving for more than three years? Would you recommend that?' Hmmm...
I was also told some time ago that the carer is more work from a palliative care perspective than the actual patient. (Not by our PC team I should add!) Does that make me feel valued or supported or show any understanding of the care I have taken in trying to fulfill this role?
Who cares for the carer?
From my point of view, no-one. Not in any meaningful way.
"The psychological horror of being a carer"Delete
A phrase from Ros that she has noted in her phone because it so accurately captures this dance we are in and hence needs to be at hand.
It's easy (in many ways) being chronically ill and disabled when set alongside being healthy and loving one who's sick. All the ultimately well-meaning folk who'd rather talk to the fit one than "bother" the ailing.
To me Tracey it is precious to hear your voice. Aside from Ros I've spoken to so few carers. Accordingly the mental world of the carer is still not in focus for me. I am too close. Thank you.
Bob, I hear you on the multi-dimensionality of face-to-face contact. Denis, more than anyone I've ever "met", picks his words with a view to reaching through that constraint.
This is the continuing and inconsolable agony of the one being cared for – our awareness of what our condition imposes on our spouses or devoted carers – and I hear your silent scream because it's mine as well.Delete
It's an irrational but omnipresent guilt for being dependent and that we will only become more so. And that there are no prizes at the end for the carer except that people will say, rightly, you did a wonderful job. You did everything anyone possibly could. They'll mean it but it won't make it one bit easier.
It is easier to be the one being cared for – except for that silent neverending scream. That's the god-honest truth. Feeling the need to apologise constantly for where they've ended up. Others may never know how painful it is to say, "Can you get me a drink of water? Can you please slice this apple?" I try not to mouth the words, "I'm so sorry" because it's painful for Tracey to hear it a dozen times a day. So it goes back to being a silent scream.
And she has hers.
I can accept the palliative care when it comes, and if they are doing their job right, it will be easy enough – but I don't have to be around to pick up the pieces of life afterward and rebuild.
You, David, are saying the same thing, or I'm very much mistaken. I'm not, am I?
The second-last paragraph of that was always meant to read:Delete
"I can accept the palliative care when it comes, and if they are doing their job right, it will be easy enough – but I won't have to take part in making certain painful decisions over that ending period, nor have to be around to pick up the pieces of life afterward and rebuild."
I'm really aware that I often interpolate my own stories into yours. That's because it resonates with SOME of my own experiences ,but also because I feel that my stories speak to yours ,that we answer each other. It's my way of saying "I'm with you as much as I can be" and maybe that's what is happening with people who relay their own desperate circumstances -it's the elephant/horse in the room again -everyone's situation is overwhelming TO THEM and they really, really need to express it to someone who has a life other than football scores..this is a great discussion, thank you everyone ,and especially Tracey whose voice I know we all very much like to hear, and who people are drawn to talk to by her, intelligent, sympathetic and understanding manner:)ReplyDelete
Julie M XXXX
It is very difficult to read both this post and all the above comments (proving yet again that "it's all about me!") but I would attempt to answer Tracey's question "Who cares for the carer?" by saying from my own experience that 'everybody does, but no-one can'.ReplyDelete
You've thus far had a much longer journey, and a much much harder journey than I had to go through with my wife, but as Denis says - everyone's experience is different, although the end result is the same.
I've always liked Denis' 'White Queen' metaphor from ages back; again we impose our own interpretation on even that, but I take it as his recognition that his carer, as in chess, is the most powerful force on the board, able to move every which way as needs demand. Tracey I do admire you for that, because I do understand the effort required, and the 'bite the tongue' required at times - and I hope your family and friends provide the solace you will need for the future. Because you deserve that.
I had this response written when I went back to check something that David Stratton had said, and was so absorbed in framing my response to that that I started writing in another window, thereby losing the first draft of this. Dumb. Frustrating. [Write responses in another program, stupido – haven't you learned yet?]ReplyDelete
What I think I said in it was that I sometimes wish I had a **LIKE** button for responses, to say I agreed with what's there and to acknowledge what you've said. Then I mused that this was not a good idea as it would be too easy to click that button and it would soon lose its meaning.
I think that the responses have been so heartfelt and engaging that any comment I made on each may be superfluous – but in saying this I also want to reiterate that I enjoy responding individually or I wouldn't do it. And it's sometimes also a way of saying, I know I owe you an email, but at least I'm talking to you here.
Each one of you has made a unique contribution. I thank you straight from the heart. Let me leave that on the table, but I have responded to one response today – to David's – and I think it's the most important one I've written in the whole thread. That's the one dated February 27, 2013 at 10:31 AM.
KVD wrote: "Who cares for the carer?"... 'everybody does, but no-one can'.ReplyDelete
And Tracey wrote: "Who cares for the carer?
From my point of view, no-one. Not in any meaningful way."
I wish to profer, from my own experience, a couple of suggestions to those wanting to know how they can "Care for the Carers" to address this dilemma.
Firstly, if you can bear to listen, and bear to hear the answer, it is very OK to ask the Carer, how THEY are, not just seek information/consolation about the care-recipient. Not only is it OK, it is a very real way in which a Carer can be heard. We all long to be understood. We don't want you to rescue us or "fix us up".
NB: As Tracey has said, please don't put articles in our letter box about homeopathic remedies, or about some guru in India who is curing MS with beestings etc etc ad infinitum. If a treatment for MS is based on scientific, evidenced-based research, we already know about it - believe me! As do Tracey and Denis know, probably more than 99% of any ordinary GP, all that there is going on out there about GBM(4).
It would be a help if you simply WANTED TO UNDERSTAND. That's all.
I suspect people don't ask me (or, probably, Tracey) how I/we am, because they fear the black-holenss of the answer. I suspect well (not ill) people are afraid of being sucked into a bottomless pit of grief and despair if they ask the good questions, the real, from-the-heart questions which come from a deep and human curiosity and desire simply TO UNDERSTAND. That's all.
Don't be afraid of being drawn too far in, people! We actually don't want you too far in. We are too busy, too exhausted, our minds filled with too many details of the minute of life required to manage each day, without having anyone else too close with us inside our emotional, physical and psychological space.
But you non-Carers taking a moment to WANT to know how it is for us - even just a little bit - that helps to ease the fundamental and unique loneliness we experience whilst we're deeply immersed in this huge task we're undertaking.
(Sorry Tracey - I got carried away there...saying "we" instead of "I". Please take "we" to mean "Carers in general". But I was trying, as impossible as that is, to imagine being, as best as I can, in your skin too.)
I've talked too long, so I'll be brief with the second suggestion for our friends and community wanting to know how they can "help".
David (Stratton - not THE David Stratton - but MY David Stratton) and I frequently muse over how strong, able-bodied people visit our home, sit at our table, enjoy the food I've usually grown as well as prepared. Then they leave without asking us, "Is there anything I can do for you before we leave?" That would help.
It astonishes me that most people don't think about there being a chronically ill, severely disabled person in the house, whose wife/Carer is 62, with old whiplash injuries and who's a little arthritic in the hips. We live on 2 acres, with trees, garden and chooks. There're always things to do to keep our home going. Dave might be brilliant academic, and he might have been a builder and mechanic in the past. But MS has meant he can't even dress himself now.
Gosh it would be nice to be able to answer the question: "Is there anything I could do for you before I leave?" With e.g. "Yes please - could you help me empty the 25kg bags of chook food into the feed bins? It'll only take a minute."
There - that was easy!
'We are too busy, too exhausted, our minds filled with too many details of the minute of life required to manage each day, without having anyone else too close with us inside our emotional, physical and psychological space.'Delete
Thank you SO MUCH for that statement. That is EXACTLY how I feel. I also believe of a version of that is equally applicable to other people I live with :-)
"There - that was easy!" No it wasn't Ros, but I know what you mean.ReplyDelete
Earlier today, after writing what I could bring myself to write here, I copied the link to this post to my family - with the following words:
"... because I wanted to pass along a link to a blog I have been following now for well over a year. You might think it unhealthy or unduly maudlin, but I at times take great comfort from following this fellow's thoughts, and those of his wife, as they face the same thing which took Pam.
I'm doing this because I found the particular post referenced in the link (and particularly the attached comments) to resonate with my own experience. You will see towards the end of the comments one of my own addressed to his wife, Tracey.
Anyway, do not think too deeply of this; it is not yet another 'cry for help' from me. Just, I wanted to share some good writing which in a small way says things I've never been able to say myself."
And no, that wasn't easy for me to share here. But I did because of the chord Denis has managed to 'twang' just so right, and the feelings you each and all were open enough to share. For which I thank you.
I am so sorry, KVD, if I have been clumsy here. I never mean to hurt or offend. When I wrote, "There - that was easy!" it was not at all addressed to you. It was not addressed to Carers. I was trying to give a clue to those able-bodied friends who want to show, somehow, that they care about us Carers. I was trying to give a simple example of just how "easy" it is to say, e.g. "Is there anything I can do to help before I leave?"Delete
None of this is easy, KVD. Besides giving birth, being a Carer over the past 16 years has been the hardest, most challenging, most confronting thing I've ever done. Probably giving birth was existentially easier because it was all over in a day (x4) with hope shining brightly at the end of the struggle. As you've quite rightly put it, "everyone's (Caring) experience is different, although the end result is the same." There is ultimately no hope at the end of this particular tunnel. The only hope is a daily one - to have enough love, enough energy, enough comfort, joy and forgiveness to get us through to the end of each day with as much as possible of our integrity, sense of self and dignity intact.
I thank you, too, KVD, for your contribution towards this vital conversation. It's vital to me. I don't get to talk about this stuff very often - well, rarely, actually.
As I'm quite new to Denis' wonderful blog, I have not had the pleasure of coming across the "White Queen" reference. I hope I can find it. I'm glad you spoke of it. Thank you. On many counts.
Ros, I promise you my 'that was easy' was simply in the same vein as your own - i.e. it isn't easy at all, and I just wanted to acknowledge that I felt for you.Delete
People think that male carers have some sort of lesser feeling or involvement; this is just not so. My wife died just shy of her 52nd birthday, just shy of our 32nd wedding anniversary. She still greets our (now my) clients on our answer machine. It is difficult. It remains difficult. I know what you are going through; I know what Tracey is also facing; I admire Denis' approach. But males always end up so clumsy at expressing their feelings, and I'm sorry if you felt anything I said was directed to yourself.
You have my hopes that life will sometime get easier to 'process'.
Yesterday I carefully wrote a response to your comment here, kvd. Against all of Denis' admonitions about writing somewhere else and saving as one goes along, I didn't, so lost it all somehow. I'll try to summarise here what I wanted to say to you. BTW - did you mean to include a link to a previous blog in your comment? I can't see it here. I'd love to read that.Delete
My heart goes out to you, kvd. Not only because you live with the pain of loss and grief every day of your life, but also because the paricular issues of men as Carers is so seldom addressed and so little understood. There is a special loneliness in that.
I am especially interested in how it is for men who care for their spouses because I watched my Dad being my Mum's Carer for almost 30 years - right up until three days before she died. She had MS. I was 16 when she was diagnosed. I was 45 when she died.
My husband, David, had his first medical test on the day of her funeral, to see what was wrong with him. Mr MS hasn't given me even one day's break in 47 years, from having to deal with his confronting and demanding presence.
I smiled when I saw Denis' reference in the White Queen post, (http://deniswright.blogspot.com.au/2012/05/reality-bites-3-playing-chess-with-mr.html) refer to cancer as "Mr C.". I have always referred to Multiple Sclerosis as "Mr.MS" and as the third person, or other entity, in Dave's and my relationship. There are three of us in our marriage. To externalise the problem i.e. the illness, we find is a very useful Narrative Therapy tool to use to keep the place and power of MS in our lives under our control, rather than vice versa.
I watched my Dad, passionately, devotedly, patiently, courageously - but silently - care so beautifully for my Mum for all those years. He was amazing. I was, I am in awe of him. Everyone in the Coff Harbour community affectionately nick-named him, "The Saint." I'm not nearly so saintly. Just ask Dave! I wish my father was still here so I could be talking with him now about this pointy end of dealing with the impact of Mr MS being relentlessly in our lives.
Male Carers do not feel less. They don't care less. The probably talk about stuff less than female Carers - and they might DO things a bit differently. But, as you hold your wife closely in your mind, heart and right in the middle of your bones, the depth of pain, and loss, and grief, is as profound.
My thoughts, and admiration, go to you, kvd.
I don't like saints - neither the "real" ones (!) nor the people that behave in a saintly way. Keeping it real is a far higher priority for me.Delete
The story of Ros' Dad helps to make it clearer. The kids (Ros +2) were "not allowed" to speak to their mum of equine matters. There was a wall of silence.
There is lot that's hard, a lot about me that's hard. How can anything change it I'm not allowed to hear it?
My experience is nothing compared to those who have looked after infirm people for years, so forgive me if I am speaking the bleeding obvious, but I did have two salvation graces during my experience of looking after my father.ReplyDelete
The first was a very good friend who just listened to me, without judgment. However, she did let me know when she thought my lamentations were excessive and she helped me regain my composure and perspective.
The second was the unexpected offer to work temporarily and part-time as a bookkeeper for a small charity. This job got me away from my father's problems for four hours per day. I was lucky in that I could go to the office, leaving my father alone, but I know it's not always possible to leave the house in this way. I did have the option of working at home, which I did as well. I set up a study in a quiet corner of the house, where I could work on the books in peace.
Having a good friend to talk to and an occupation which diverted me and gave me my own space and money saved me from what was a very depressing and frightening situation. A carer does need to be cared for, otherwise everyone suffers. Only a good friend or a counsellor who is not one of the suffering friends or family can provide such care.
Having said that, there was another time in which I was at the bottom of the sympathy ladder -- when Carl's father was dying and his daughter was in a psychiatric ward. No one to care for me but my cat. At least I had her, which was better than no one, but a friend is much better and can understand or at least help you stay sane. A friend and an interest outside of the relationship do not make the problems go away, but they become easier to bear.
A friend of mine, a retired hospice worker, said to me that her main clients were the carers, not the patients. She said the patients were more interested in life than death, and just wanted to enjoy the moments they had left, while the carers were often tormented by fears of loss and worries about how to manage once the loved one had died. They are the ones left behind, as you said Denis, to pick up the pieces.
I have read this thread on horses, elephants and the White Queen, and feel I need to honour all of you with a response. Ros and Dave have been my friends for over 20 years.ReplyDelete
I don't need to go into the history, but it involves a lot of love. I am relieved and possibly, somehow, liberated by learning more about what is going on 'behind the scenes' for the carers and the cared-for, about what they need and what is helpful and not helpful. Maybe I will know better how to be there for and with them.
I will add something from my point of view. Because I see Dave constantly, and I see him when he is out and about, he is always 'normal' to me. It isn't that I am unaware of the deterioration in his condition, it's more like watching a child grow or a friend age: it takes a particular event or moment to bring it home, like the first day of school, getting the driver's licence – or giving up the driver's licence.
Ros came to visit me not long ago because I had the need to talk, and so we talked. About me, about her, about us.
Anytime, Ros, anytime.
All the discussion generated by this blog posting has made me think much more deeply than I imagined about what it is to be the carer, the close relative and/or friend who is the visitor, and the way I come across to them.ReplyDelete
I'm not one for the blame game, but I see now that I am part of the difficulty for visitors, or even those who know me only through my writing. It's not just the other person. I'm sure I give a dismissive impression about myself sometimes that cues a visitor or correspondent to turn quickly to other things.
Sometimes I may not want to discuss in any detail my ailments if, for whatever reason, I'm feeling unwilling. it may be as simple as 'I haven't shaved this morning and feel like I look like something the cat dragged in.' The visitor, of course, really doesn't care about that and nor should they. It's minutiae that's not even on their radar. But you know how it is. Ego's a pain.
So, as long as the air is filled with chatter it seems all right. Silence is awkward. Silence or breaks in conversation aren't tolerated in our society. They're taken as cues for action – maybe e.g., that it's time to go [when maybe it's not] – or just to fill the space with... anything.
In other words, silences can be minefields for clear communication – and in the end it's no-one's fault.
And sometimes it's a matter or plain can't. In wrestling with something that badly needs discussion I can often be my own worst enemy. The words just come out wrong – and this gets worse the less I am sure of the topic. So the other person gets it wrong.
If I give wrong cues, of course it's misinterpreted. If others give wrong cues, the result's the same. Miscommunication.
What I'm scared of is that people reading the thread concerning visits will now be so afraid of not 'getting it right' that they won't communicate at all. That's the last thing I want.
In my present state, even being sent a long email daunts me a bit. The brief email with a sincere 'no need to respond' [I probably will!] is often all I need, and most appreciated. But don't make it so short that you leave out something in your life that is important to you. If it's important to you, it probably is to me.
I'm not as I was even 12 months ago. More than ever before, I need far more quietness and solitude [where I do my best communicating], and the set routine I have. My best therapy is composing my blog stories, even though they now take ten times as long.
Speaking of which, I'm going to make this a separate blog posting, which may direct interested people back to these heartfelt responses.
Denis, if you will persist in writing these thoughtful, deeply perceptive essays then you surely can't be surprised by the occasional heartfelt response? (irony off)ReplyDelete
A book I've always loved is Alice in Wonderland. There's a couple of lines there which, again, I suppose 'twist' to my own meaning - but maybe they will resonate for any carer: Oh Mouse, do you know the way out of this pool of tears? I am very tired of swimming about here.
Reading Denis' post and Ros' comments make it clear to me that at least my dear sister and I can have a discussion about and with the horse on our table.ReplyDelete
My role as 'carer' is different to others. It is no less emotionally draining, and no less fear making, but it is because I, too, have a husband who presents 'normal' and 'fine'(his favourite answer to 'how are you?') I have always made the offer to people ( his family in particular) that if you REALLY want to know how Clem is doing then please ask me, not him. His family never have...in 22 years!
Being close to death at least three times has made the conversation that Denis is helping to bring to the fore a necessity.
We had to have it anyway ( 'we' meaning Clem and I and Ros) during my father's end life. I learned to trust my sister implicitly in all things about the whole damn thing.
Being a carer for me is scary, lonely and very confronting. People say you are strong....they are wrong. People say 'what doesn't kill you makes you stronger'...they are wrong. What doesn't kill my husband makes him more vulnerable and therefore so am I. We are fragile, very very fragile.
Life continues. There is no malice - priorities change and are changed:ReplyDelete
"The story of Death being apprentice to a respected, accomplished man makes one realize the simple beauties of life-- passion, family, love... and peanut butter."
Thank you, my friend.
I love kvd's "Alice' quotation. Says it all, just about. Carers -yes. My neighbour's friends have 2 adult children with cerebral palsy. Intelligent, severely disabled children needing lifelong care. Oh this world, to have such difficulties in it!! Strength to all carers and those angels they love.ReplyDelete
Julie M, and KVD...I don't know if either of you are on or use Facebook. As Denis mentioned somewhere in this post, he wishes there was a "Like" button on comments on a blog. I would be ferociously clicking on "Like" for the reminder of kvd's exquisite Alice quote - and for this recent comment of yours Julie M. xxDelete
I so often want to respond to your blogs and don't get around to it but I feel compelled to reply to "Horses on tables and elephants in the room". In a way I felt like you were giving us permission, in fact inviting us, to talk about the horse and the elephant in a way that we never have before.
My story relates to the elephant in the room and I hope you don't mind me sharing this on your blog. My elephant was called Bobby. He was my firstborn and was stillborn at 40 weeks. I don't think it was an easy time for others but I was, and still am astounded how many people didn't mention him in those first couple of weeks following his birth/death. It was as if they thought saying words of consolation out aloud would somehow remind me of the terrible sadness, as if the grieving had forgotten their grief. Some would change the subject if it arose, others would talk about inconsequential things as you have described, but the one I found unforgivable was the "Hi, what's been happening" kind of inquiry . "Well aside from having a dead baby, nothing much" is the only answer I could think of. Just a tad macabre like you say Denis so often I didn't even reply. They were dark days. Like you Denis I had no qualms about talking about him but I waited for an invitation to do so. It's amazing how we turn ourselves inside out to protect others from the discomfort of having to be around grief.
Having said that it wasn't all bad either. One of my dearest friends called me from Sydney when she heard Bobby had died. She was crying and she asked me "Was he a beautiful baby". I hadn't realised until then how much I had pined for someone to ask me that question. I got to talk about all things that new mothers brag about like his weight, he was a hefty 8lb 10oz, I got to describe his hair which was dark and curly (there was lots of it). He had beautifully shaped ears and a solid chest. I remember thinking "yes the pregnancy was real, the happiness was real" and though I wish the outcome had been different I would do the whole thing again even knowing that it ended this way. The elephant was being acknowledged.
Enough of my elephant though Denis and on to your horse. I remember you tweeting in October of last year that it was so many days until the US election and you wondered whether or not you'll be around to see it. Privately I thought "Fucking Hell don't say that Denis". As the new year came and went I DM'd you to remind you of this and to express how happy and relieved I was that you had been wrong. You replied in your inimitable way, "If I keep surviving people will think I'm crying wolf. It's getting embarrassing not doing what I say". Well LOL as we say on twitter Denis and if it’s embarrassing then so be it. I was of course, albeit privately, dipping my toe in the water, daring to discuss your increasingly poor health and impending death. Your response was typical of your mischievous nature and I immediately knew it hadn't been a mistake to mention it. Like David I have admired you for a very long time and he summed up my feelings perfectly when he said "when my time comes I want to do it as well, as knowingly and as honestly as you". You really are a one-off Denis, a remarkable human being and as I've already had a burst of truth telling I will say to you what I've said to others privately, "I love Denis to bits"!
Love from Catters xx
ps I just wanted to add that I have enormous respect for Tracey AKA Beloved and it’s been lovely seeing pictures of her lately. I particularly like the picture of Tracey and Christian from the “Gap Year” story. Also, not their blog I know, but sending love to Ros and David as well. Have been following Ros for quite some time without actually knowing her and David’s story. Your comments to each other gladdened my heart no end.
Take Care All x
Thanks, Jane, for your love and kindness and as you've seen from the responses above, it was indeed an invitation for so many to confront their horse – and/or, I must add, their elephants, because they're not the same. There are others who have their own reason to leave the horse undisturbed, and I respect that. It makes no difference to my feelings of affection for them. There are people who wish strongly to keep their griefs private. I'm not one who knows whether that's good or bad or even wants to think too much about it, because I can't be in the other person's shoes.Delete
Which brings me to the Jane Catters story, so powerfully expressed here, and let me say at the outset that it's your expression of your grief that makes me more fully aware what it means, for a mother in particular but to both parents, to experience the death of a child in this way.
Often I have heard and seen written a mother's expression of her grief at the death of her baby before or at birth before, and always knew by the way they spoke of it what a trauma and tragedy it is. I thought I understood, yet I know now for certain that all I knew was the iceberg tip of that grief which goes to the core of what it means to be a mother. And while we love all our children equally there is something more poignant about it when it's the first-born.
[I don't know if it's politically correct to say that, but in this case concerning PC-ness, nothing quite equals in intensity the **** I do not give.] Besides, I think I have the right to say so earned by seeing my own first-born in the first minute of life in the outside world lying still and with a swollen green stomach, and the violent shaft of fear and horror that comes with a doctor approaching and saying those words, "There's something wrong with the baby." In our case, it had a happy ending, and that changes everything. Very many do not, and the death of your beautiful baby was one of those, and you have expressed the pain of this very eloquently.
Perhaps I would have been one of those who expressed a genuine sympathy of the iceberg-tip type and then wanted to move on as quickly as possible. My response now is not as it would have been then. The Buddhist parable of the mustard seed [not the Christian one] I read forty years ago would have influenced my thinking on this. I won't recount it here but it is on my infinite list of things to blog-post about.
As to my 'rumours of my death have been very much exaggerated' comment on Twitter, it is as much a statement of the limits of 140 characters as anything else. But right now this writing is badly cramping those fingers on the bruised left arm and I will stop. Thanks, Jane, for sharing your story. There will be many who understand your grief from experience. And sometimes it's just the sharing that is what's asked for, and an ear that's not on a person who is too confronted by the word "death".
Thank you, Jane, as Denis has said, for sharing your important story - so beautifully.Delete
People very often don't mention the death of a baby, or any death of a loved person, because they are afraid they might "upset" the bereaved. Speaking with my old grief-counsellor's hat on, there is one thing, amongst many, I'd love the world to understand: mentioning a deceased, loved person's name is not the cause of "upset". The person who is mourning the death of a beloved is already upset! It is a vanity for those feeling sympathy to think they have any power to make the loss any more "upsetting" than it already is. Does that make sense? The pain never goes away - we just learn to live with it.
I wonder how many of us out here in the cyber-world, in the Twitterverse and in blog-land are cheering these words you, Jane, have found to say publicly, so eloquently, which the rest of us feel, but have been at a loss to know how to say:
"You really are a one-off Denis, a remarkable human being...I will say to you what I've said to others privately, "I love Denis to bits"!
Thank you, Jane, for bringing your precious Bobby into our imaginations.
And thank you, too, for giving the rest of us the words to say for how we feel about Denis - and his Beloved, his Wonder Woman, Tracey.
I have waited a while before commenting on so sensitive an issue. I'm not terminally ill and I'm not a carer, though may well become one, but at my age am inevitably surrounded by those who are both.I have learned a good deal from reading this particular blog posting and the responses and now feel I have a better understanding - especially of the feelings and needs of the carers. Denis has taught all of us a lot about squaring up to a malignant brain tumour but Ros and Tracey have taught us something about what it's like to have to be on hand day and night, month after month, year after year watching the person you love most in the world fall to bits and die. I' ve long realised that the best one can do for the carers is to offer practical assistance rather than mere words (they've heard 'em all!)but sometimes it's difficult to know the difference between being helpful and being intrusive. Of knowing when to leave people alone in their pain and grief and when to provide them with either cheerful or sympathetic company. Bustlingly well-intended people forever in and out of the kitchen with casseroles and cheery advice can be just as irritating as those who stay away because they can't deal with other people's illness and death. The life of the carer is full of challenge; it seems to me that the challenge for the rest of us is how best to care for the carer.ReplyDelete
Thanks, Julie L., my good friend for many years now along with Bob. You've always been one for facing things directly. Tracey and Ros can probably comment best on practical assistance but I do know a phone call to say, "I've made this casserole/quiche/curry/whatever and there's more than enough of it for us – can I drop some over if you'd like it?" which will probably be gratefully received or, if you're good enough friends, might meet the response, "Wonderful but we can't eat that because it goes right against what we are allowed [e.g., a giant mudcake or anything else full of sugar and butter] so we'll decline the offer, but appreciate very much the thought."Delete
That of course can refer only to people in a town like Armidale or who live close by, and in that we are extraordinarily lucky. Big cities are different. But there may be other things you can do easily enough but hadn't thought of, and carers quickly accept the fact that they can make a suggestion which might suit you.
Maybe this isn't quite my department as somehow [I know how!] my immediate needs are accommodated most of the time. But you never know.
All I know is that it's in the critical and selfish interest of the person in declining health that the carer is supported, cherished and appreciated, and that action always speaks volumes. Take a chance rather than be afraid. I for one don't expect every person to have intuition or the experience to judge whether their action fits the bill perfectly.
You're right, Julie. None of this is easy. It's challenging and tricky and hard to get the balance right from any angle you look at it.Delete
Rule of thumb? If you are not sure about anything, simply ask. Make no assumptions about anything. Anything that comes from a sincere, non-judgmental, and humble place is ok.
E.G. Denis' example of a meal - after checking dietary requirements.
Or: E.G."I'd love to do something to help. I'm free this Wed afternoon. Is there anything I can do for you?" Shopping list? Baking for visitors? Walk the dog? Etc. List things you feel reasonably able to do.
Tracey probably can add to this list better than I can.
The only other thing I'd say here is: If the answer to your offer of help is "No, not at the moment thanks" - just please don't take that as a rejection. Don't take it personally. None of this is about you. We Carers and those needing our care, are all just doing our best to survive day-to-day. We're like ducks on a pond. We might look like we're gliding gracefully and effortlessly, but be in no doubt that we're paddling like hell underneath. And all of us, including our friends, family and community, are just making it up as we go along.
Forgive us when we're cranky - we're sleep deprived like you wouldn't believe! Respect our space and privacy.
Above all - don't give up on us.