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Sunday, March 31, 2013

Let's get practical 3

Easter Sunday, 31 March 2013.

Who cares for the carer?

I want to live, as much as any person. I have much to live for. I don't give up easily; not while there's a manageable quality of life.

   "You surely want to die at home, don't you?" was the question put to me – by a doctor, three years ago.

   There is a constant theme in much of the discussion about death which comes back to this notion.

   For quite some time I nursed this romantic idea. There's a large window in the bedroom and a cherry tree outside. It's alive with birds and greenery.

   Well, it was a few weeks ago, but now the pale yellow leaves are curling and dropping. It has no attraction for birds, and is far from a romantic vision, except that its winter skeleton may turn out pleasing aesthetically with a deep blue sky behind it.

   As with many romantic visions, there is one vital thing missing from it that is far from romantic, and which seems completely ignored by any discussion I've seen so far.

   If I tried to follow that path of dying at home, who exactly is going to do all the caring, 24 hours a day, 7 days a week, for an indeterminate period of time that could stretch into months or even longer?

   I can't speak for others who may cherish this romantic notion and whose circumstances may differ radically – only for myself.

   For me, only one person could do the worst of that, and only up to a point. Some nights I am up several times. That could be avoided, at the price of turning me into a complete invalid. But Tracey would still need to be on hand every minute through the night. She'd need to sleep in the same room as a restless patient, prepared for anything at a moment's notice. Absolutely anything, including a stroke, heart attack, seizures, and toileting.

   We have already seen what a superhuman effort it took mid-last year for Tracey to get me from the bathroom, where I fell, to the bed, just a couple of metres away. It would be impossible now. Everything is that much harder.

    Even now, there are scores of little things that collectively take up time and energy of a carer as assiduous as Tracey is, when I'm incapable of many of the simplest elements of self-care. I can't even open a jamjar. I can barely make tea, and that with great effort. 

    But there is one big exception to that which may change at any time. Except for showering, I can manage all other bathroom operations – with absolute concentration and care at each step (literally and figuratively). When or if that shred of independence is taken from me, the game changes completely. That's when someone has to be on hand 24 hours a day, right there when needed.

    It may be possible for a limited period for Tracey to attend me 24 hours a day, if I'm cooperative and reasonably lucid, or when there's time to adapt to new circumstances, but ultimately it will become too much. It could become too much almost immediately.

   With my condition, anything can happen as deterioration occurs. I won't spell the possibilities out so use your imagination in the case of a brain tumour, but include dementia, paranoia, personality changes, psychopathic episodes and wild mood swings.

   The relentless demands on the primary carer are what I didn't include in my romantic plan, and I have no intention of being responsible for the total breakdown of health of the one who has looked after me with such insight and forethought for more than three years following diagnosis and treatment.

   All of this has taken place right here at home, apart from two months I was in Melbourne at the beginning of 2010. Tracey has looked after me with great love and care, for c. 1300 days. More than 30,000 hours – so far. And that's what you might call the "easy" part compared to what's likely to be ahead. More and more will be demanded of her.

   "Home care can be arranged" is often said. Not in this house it won't. Nor do I desire it, after a certain uncertain point. If other people have to be around daily coming in and out as I decline, then there is neither romance nor comfort nor safety in it.

   There are facilities designed for these circumstances which can save us all from that hardship and much of the indignity. We will put into operation planned arrangements if and when the time comes.

    I remember that one of the main criticisms of the article I mentioned in Part 1 was that it did not deal with hospice care. The author responded that his piece was about what happened before it came to that, if it had to, so some injustice has been done to him for not adding it to his description of care.

   But he did not address the question that stood out to me like a devil's tail after the romantic vision faded – the plight of the carer in dealing with their partner dying at home; especially a carer whose deeply emotional involvement constantly moves them towards the edge.

    The other thing I wanted to mention concerns visitors, when it comes near to the end point. For some, there seems to be a notion that the number of people around the dying person is directly proportional to their degree of solace. Not for me. Quite the reverse.

I'm not Abraham Lincoln, and presidential death is political, but please, not this.
   Please spare me that. This could not be further from my view of peace and solace. I would far rather most of my friends, particularly those who haven't seen me for a long time just send an email to Tracey, and try to remember me as they last saw me when I was well, or relatively so, rather than attempt to visit. 

George Washington's death in the artist's eye; more romantic but far too many about.
   Barring miracles and sudden events (which may turn out miracles in their own way), I will probably go into such care in order to have as good a death as possible. That is the sole purpose of palliative care, not life extension for its own sake. However noble your intentions, I will not thank you if you try to insist on attempts to revive me when I'm on my way out. If you get news that I'm hooked up to all sorts of devices, then the system has probably failed me.

    Your reasons don't count. Your religious or philosophical beliefs about life and dying are irrelevant to me. Already religion through legal device intrudes starkly way too much in a highly personal matter. Save those for your own death, but please don't interfere in mine.

   I'm with the doctors.

   There is much more to say, and I've decided not to, but the final part of this series is an edited collection of the best responses to this programme. I'll put in bold face the strongest points within those. It's worth having a brief look, at least, when I post it shortly. I'd also recommend a new posting by our friend, Anne Powles: 'Life and death'.

   Finally, I conclude with one of the comments I liked best. You'll see why, I'm sure, if you read right to the end of this quote.
Not surprising in the least. Quality, not quantity....I've grieved for my terminally ill patients going through these procedures, prolonging life at the expense of comfort both emotional and physical, often times more so than I have grieved at their final passing. I have wept over to the fear of possibly being that patient myself. I feel strongly that my medical education and experience gives me a clear perspective in decisions that I make to forgo these procedures myself, as most the doctors surveyed for this piece. As a doctor I have sworn an oath to do no harm, and in my mind, allowing a peaceful death and shortening suffering in the conditions outlined above fall well within that jurisdiction.

I am veterinarian. Jan. 17 2013 06:47 PM

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  1. Again and again - thank you, Den.

    Sitting up in bed alongside David, one morning recently, a time when we can both forget he has MS, cup of tea in hand, we chatted. We tried to think of another person in our full and people-filled lives who so emphatically, so articulately, so empathically, describes the inner world of the Carer, as you do. We could think of no-one.

    Your insights into the dynamic between Carer and Care-Recipient, in my 16 year-long experience of being a Carer, touch the centre of the grief and pain of it all graciously, sensitively and respectfully.

    We both love you (and Tracey) and thank you (both) from the bottom of our hearts.

  2. I feel the odd one out in this four part drama. To the extent that I am so not terminal, and to the extent that you so are, it feels fraudulent for me to be part of this discussion.

    At the same time both Ros and Tracey are carers, to differing extents and in different ways but sharing the unremitting-ness of that role.

    The respite of the hospice and the respite of the rehab ward are completely different creatures. Both a relief from caring duties but I return and Ros if she can manage can stop thinking of me for a while. I cannot imagine that on your side.

    What I take most clearly from what you have said is the idea of drawing a line, as a care-recipient, under the impact we have on our carers. The carer is not a bottomless pit however much we love them and them us.

    You have seen clearly where to draw that line. I still don't know.

    1. All the time I was writing this I was thinking about your case, David, and worrying that you might think I may not have a clear distinction in my mind between the demands for MS and GBM4 care-recipients. I needn't have been concerned, because you do, and Ros and you have tackled all of this as a relatively slow process, in which you both make sacrifices in caring for the other's wellbeing up to the limit of what's possible. I know that you go into voluntary exile for periods for Ros's sake, and that's admirable. Mine when it comes may be of a different sort from yours.

      We face uncertain futures, you and I, but uncertain in different ways if we look at our histories and prognoses. It is likely that you will retain a clear mind; that's far less certain for me. What we have in common are the remarkable qualities of our two carers, who we do indeed have to 'look after' as best we can, as all four of us [and so many others] face the unpredictability ahead.

      In your case the line is very much in the sand. Well, compared to mine it is. Maybe. Mine is simply likely to be more unpredictable up to the point when it has to be crossed. So you are by no means the odd one out and I very much appreciate your coming into the discussion.

      I apologise if this lacks clarity but it's late in the night. It would have been on my mind had I not sent it now, so I hope speed makes up for quality.

    2. Thank you for favouring speed - I have absolutely no qualms regarding quality!

      My portrayal of lines in sand was meant to convey my uncertainty about when to "pull the plug" on non-institutional care. My impression is that you and Tracey have figured out where you guys draw the line.

    3. This is proving a vitally important discussion for Dave and me to be having, Den. Thanks for inadvertently facilitating it. We've never really broached the "when would it be all too much" topic?

      So, since reading this blog post, we have been talking about when we (Dave and I) will/would "draw the line". That is, when would either of us say, "It is no longer safe and/or sensible for (Ros) to take care of (Dave) at home."

      The obvious first line is - if new demyelination in his brain, or a stroke,caused a degree of dementia which I couldn't safely handle e.g. if, completely out of character, gentle Dave became violent or in anyway aggressive.

      The second line in the sand would be if Dave fell and broke his hip/pelvis/back and was completely immobile - even with massive amounts of equipment I couldn't picture how I would manage his nursing needs without injuring myself.

      Until then, I reckon I'll/we'll just accept all the services, at-home-nursing supports, funding for equipment, any gadgets that can make things safer for transfers or hygiene needs or whatever, and the occasional bouts of respite so I can get some unbroken sleep as we can get.

      And keep seeing every day at home together as a minor triumph. How does that sound for a bit of a line-in-the-sand? It's a start, anyway.

      I think that's it. It'll be interesting to see if Dave, or anyone else, has anything to add that I haven't thought of!

  3. I agree wholeheartedly. I am far more worried about buggering up my darling's life than I am about "being in a home".

    1. If you're agreeing with your darling, then it couldn't be better said. [If with me too, then all the better!] Ros's sand-markers – sorry Ros; I should be talking directly to you – are exactly the ones we know we have no choice over here as well. This is why every step I take is done with fall concentration. "fall"? what a typo! "full."

      Breaking a serious bone area? Beam me up, Scotty.

      As to our being absolutely clear on this, I wish we could be – but as you both know full well, it takes the circumstances to be right in your face before you know what the score really is.

    2. Exactly, Den. Every day is its own unique entity. We never know what shape it's going to be, or what new surprise it's going to throw at us.

      So I resolve to squeeze the joy-juice from each day, and delight in small things, and hurrah the next successful. safe transfer, and try to remember to say, "I love you" early and often, and ask forgiveness and be forgiving as best I can. And try to forgive myself when I fall down on any/all of these resolves.

      And in the end, we can only be so much "prepared' for how the end will be because it won't be exactly like that. The two most important gigs of our lives: being born...and dying. And in between we are all just making it up as we go along. And doing our very best under the unique circumstances of every day. ('Resilience' is a very underrated quality, I've come to understand.)
      That's all.

    3. These sentiments should be framed and put up on every wall, except that people would get so used to seeing them they'd probably start to lose meaning – unless you suddenly found yourself reading them from a different angle.

      Resilience, forgiveness and acceptance of what can't be changed – yes. The hardest people to learn to forgive are so often ourselves.

      Tracey and I were talking just last night about the 'surreal' quality of own-death discussion. In fact, it may not be anything "like that". All we can be is to be prepared mentally for the likelihood that it will differ from anything we might imagine, viewing it as we so often do as if we were observers, not participants.

  4. That last paragraph,in your answer to Ros, above, rings true to me. You can't control, prejudge, how it will be, how anyone will feel, about any of it (in my opinion). But we sure can't help thinking about it, little busy bodies (busy minds) that we are. And 'be prepared' was always a great slogan. It's just that in some circumstances you really can't be. Yet that is not a reason for fear. Often our imaginings are far worse than the reality.What do the Buddhists say - something about anything that is not actually happening in the immediate moment is only imagined.And even then much of its effect depends on our thoughts.

    Good conversation, thank you (again)

    Julie M

    1. Denis, your comment reminds me of a phrase from a song by a rock band, The Incredible String Band. "What ever you think, it's more than that."

      If we can accept that our mind chooses what's important and constructs reality out of an infinity of material, then surely that applies as equally to our death as to our life. Much of Tibetan Buddhist discipline is preparation for this. But you know all this, Denis, better than I do, and no doubt have taken from it what is relevant and meaningful to you. You are in my thoughts all the time, even if I cannot go with you at this time.

  5. Just a general comment in terms of what Denis is actually talking about.

    For Denis, death itself is not the concern. It is the how difficult and painful, emotionally and physically, the living will be in the getting to death.

    1. Well said, Tracey.
      I, too, don't mind not existing. The only thing I care about is how the *manner* of my departure impacts upon those who love me - and I sure as hell don't want it to hurt too much or for too long.

  6. Then for all of the above, we can substitute the word "dying" for "death". It will still make sense.

    1. And yet it's bigger than just about the process of dying, although that's where the focus seems to be in parts of my story. It's not just about the person taking the train ride. It's the perceptions and involvement of everyone involved.

      There is so much I've left out. Perhaps it's a good thing.

      Recently I saw the legendary Charlotte Rampling interviewed by ???[British interviewer, not Parky!] They got quite pally over the series of interviews and he said to her, "I'm not worried about dying; what worries me is being dead." I thought it was an extraordinary comment for an ageing man to make. Gee mate, you should have sorted that out well before now....

    2. I feel we are all on this train, only some of us get off at an earlier stop, and for others, it's a runaway train. The word "terminal" comes to my wicked little mind.

      Everyone I know who talks about such things, is not afraid of being dead, but very uneasy about what will take them there. Sometimes I feel envious when I hear that someone has dropped dead on the spot or unexpectedly died in their sleep, thereby bypassing the slow disintegration of the body and possibly the mind. And then I think, well who knows what kind of a terrible shock that might be for the person involved, not just for the family, and that perhaps it's better to be prepared and allow natural processes to unfold. Whatever comes, we just have to accept it. What choice do we have? For me, I imagine that the most difficult part will be emotional -- saying good bye to loved ones. All the pain killers in the world can't touch that pain.

      The Tibetans observed the dying process and documented a series of stages. But that would have been for old rinpoches before all the medical interventions we have today. Whether those stages applied to the pesants in the fields, ill-fated birthing women, or children dying of childhood illnesses is unclear, but I suspect the palliative care people are very experienced in making patients as comfortable as possible, taking care of every physical need as it arises. I suspect a lot of old rinpoches would have been grateful for that.

    3. PS. Perhaps that ageing interviewer had done something in his life he shouldn't have done. Not that long ago, most people believed in a life after death where you got punished or rewarded for your life's deeds. "Justice is mine," saith the Lord. I suppose a lot of ageing people used to be afraid of death for this reason. It would be interesting to know his reasons.

    4. I have the same feeling as you about those who have a sudden death, even an intensely short, violent one; but especially those who 'die in their sleep' gently, or would appear to.

      For a talk on this by an experienced neurologist aware she was having a stroke, this is what I class as 'must watch': Jill Bolte-Taylor, along with reading this uniquely perceptive short piece by Roger Ebert.

    5. PS Roger Ebert died on 4 April. Link to that piece from Ros Hart. Thanks, Ros.

    6. Jill Bolte-Taylor gives hope to anyone who has suffered brain damage, stroke or otherwise. Her entire left hemisphere was obliterated by the stroke, leaving her with only her right hemisphere with which to connect to the world. For her, the state she lived while she gradually regained the use of her left hemisphere closely resembled descriptions of the Zen state of kensho. She called it, "sitting in the lap of the universe". She had no concept of self, no language, no thought -- just an expanded state of blissful awareness in which she felt at one with everything. Her experience is an invaluable contribution to our understanding of the roles of the two hemispheres, which has come under some doubt over the last couple of decades.

      With the help of her mother, over 8 years she gradually regained her ability to think and speak, unfortunately at the expense of the expanded blissful awareness, unlike descriptions of the more permanent state of satori, in which the mind maintains both the kensho experience and ordinary mind.

      Her description of watching herself lose her left hemisphere is fascinating and horrifying. As a brain anatomist, she figured out what was happening, and before she completely lost her thinking skills, managed to phone her office for help.

      I recommend, especially to people dealing with stroke or brain damage, her book, My Stroke of Insight, and her several interviews online, including the Ted performance, which Denis has linked to, and her interview on Shrink Rap Radio #147( The latter, I think, is the better account.

      Thank you Denis,for the link to the Ebert essay. It is very insightful and moving, and I take it to be basically your experience and understanding as well.

    7. Re J B-T, I couldn't put it better. Thank you. Even if people don't understand the Buddhist philosophy in it, they'll surely get the purely neural explanation. I hope people watch the video and not just listen to the soundtrack. People need to see how neat and beautiful and marvellous the human brain is from those camera angles.

      My only regret is that for the 95% of Ebert I agree with, I resent his being able to do it in 900 words, when my thoughts on everything he raised are scattered through thousands of words of meanderings on my blog. But yes, let his piece stand for the way I feel about how the fundamental things apply.

      As Time Goes By.

    8. Yes, Jill Bolte Taylor's video is inspiring, albeit a bit evangelical for my taste; hence I prefer the book and the other interview. But then my interests and obsessions would not be considered a human thing by Ebert. As he says in response to his wife's intuitions: "What goes on happens at a level not accessible to scientists, theologians, mystics, physicists, philosophers or psychiatrists. It’s a human kind of a thing."

      I found that statement astonishing given that his wife appeared to have a nearly mystical intuitive experience which is the subject that defines the work of many theologians, mystics, philosophers, and more recently, cardiologists and psychologists. Are they not human? The paradigm on consciousness is shifting and I'm reading things in the NewScientist that would have seemed heretical even 2 years ago.

      Thanks for using Ebert to clarify your position. I believe David Stratton asked you a few postings ago and I hope this answers his question. I must admit it comes as a surprise to someone who has shared your interests in comparative religion, meditation, and Eastern philosophy. But then, you are in good company. Some of the most distinguished minds of our generation have come to these conclusions (Ebert's).

      Oddly, I was thinking last night that all these minds that come to my mind are male. And I began to wonder if women approach death differently. Ebert's would not be my story, for like Pi in The Life of Pi, I would choose a better story if nothing lay ahead for me. What does it matter what you believe when confronted with nothingness? What comforts and inspires would be my choice. Besides, my personal experience wouldn't fit into Ebert's story. But that's me and you are you and I'm grateful to know your position.

    9. I'm not so sure that Ebert is meaning what you appear to think. My view was always that mystical insight was the umbrella over all religions and philosophies. To my mind he's taking it slightly further in that it derives from human consciousness [beyond the senses and the intellect] and not from what seems to be the usual limited perception of mystical states. Without the human mind, this would all be meaningless.

      I think it matters a great deal what you believe, regardless of what may or may not be ahead. Naturally I can't speak for women, but then I can't speak for other men either. I can only speak for how it seems to me, and I don't try to set limits at all. To do so would be presumptuous coming from a human mind.

  7. You are very kind to Ebert. Much kinder than I. I sensed a nearly anti-intellectual hostility towards the approaches he listed, in contradistinction to the "real" experience of his wife. I won't go further, there's not enough room here for my ranting, but perhaps because I also share a similar feeling towards some theologians and some scientists of the Richard Dawkins kind, I recognised a kindred spirit in part in Ebert, one that I try to rein in.

    I agree with you about mystical insight. It's not really mystical at all, in the sense that we usually understand the term. It's just a wider glimpse not normally available to ordinary consciousness, which illuminates and clarifies previously obscured realities. But just like ordinary consciousness, it is multi-varied and vast in its potentials and differences. Perhaps this is what you mean by the "usual limited perception of mystical states". Of course, we can only see as far as the human mind will allow, and I certainly have not tested its full capacity, so it seems limitless to me, but vastly variable.

    I also agree that it does matter what we believe, but in relation to our present psychology, not in adherence to a "truth" which might be nihilistic and destructive of hope, comfort, and contentment. If there is nothing ahead, whatever we believe will be irrelevant, so my position is that I can believe whatever gives me hope, comfort, and meaning now. Tibetan training aimed to allow transition into death with a clear, alert consciousness, so as not to fall into delusion. There is merit in that as well. So I intend to go clearly and alertly into my fantasy, if I'm lucky enough :).

    I'm enough of a Buddhist to think that Buddha wouldn't have recommended all that meditation, renunciation, and training if parinirvana was assured at death for everyone. He would have told us to eat, drink, and be merry, and don't waste time on "spiritual" matters. The institution he established suggests that his apparent reductionism is not the whole story. For Buddhists, anyway.


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