tag:blogger.com,1999:blog-5722735165669239585.post2197209280149083997..comments2023-05-24T23:33:57.516+10:00Comments on My Unwelcome Stranger: Horses on tables and elephants in the roomDenis Wrighthttp://www.blogger.com/profile/12786035137418348609noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-5722735165669239585.post-86662248975141456442013-03-08T18:26:26.468+11:002013-03-08T18:26:26.468+11:00You're right, Julie. None of this is easy. It&...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.<br /><br />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.<br />E.G. Denis' example of a meal - after checking dietary requirements.<br />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.<br />Tracey probably can add to this list better than I can.<br /><br />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.<br /><br />Forgive us when we're cranky - we're sleep deprived like you wouldn't believe! Respect our space and privacy. <br />Above all - don't give up on us.<br />Roshttps://www.blogger.com/profile/13339472107640597921noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-64727647060012082442013-03-08T16:50:49.990+11:002013-03-08T16:50:49.990+11:00Thanks, Julie L., my good friend for many years no...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." <br /><br />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.<br /><br />Maybe this isn't quite my department as somehow <i> [I know how!]</i> my immediate needs are accommodated most of the time. But you never know.<br /><br />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. Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-13218677463823411322013-03-08T10:24:23.519+11:002013-03-08T10:24:23.519+11:00I have waited a while before commenting on so sens...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.Julie Lakehttps://www.blogger.com/profile/10268676551467882065noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-55706847990507076952013-03-05T16:29:02.980+11:002013-03-05T16:29:02.980+11:00Thank you, Jane, as Denis has said, for sharing yo...Thank you, Jane, as Denis has said, for sharing your important story - so beautifully. <br /><br />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.<br /><br />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:<br /><br />"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"!<br /><br />Thank you, Jane, for bringing your precious Bobby into our imaginations. <br />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.<br /><br /><br />Roshttps://www.blogger.com/profile/13339472107640597921noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-32066018040069784022013-03-05T11:10:48.426+11:002013-03-05T11:10:48.426+11:00Thanks, Jane, for your love and kindness and as yo...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.<br /><br />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.<br /><br />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. <br /><br />[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. <br /><br />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.<br /><br />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".Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-17139968431982674332013-03-04T21:53:57.223+11:002013-03-04T21:53:57.223+11:00Dear Denis,
I so often want to respond to your bl...Dear Denis,<br /><br />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.<br /><br />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.<br />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.<br /><br />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"!<br /><br />Love from Catters xx<br /><br />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. <br /><br />Take Care All x<br />janecathttps://www.blogger.com/profile/16504096978058176076noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-76256452385294348932013-03-01T22:18:13.763+11:002013-03-01T22:18:13.763+11:00Julie M, and KVD...I don't know if either of y...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. xxRoshttps://www.blogger.com/profile/13339472107640597921noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-81426283368644118952013-03-01T21:12:15.996+11:002013-03-01T21:12:15.996+11:00I love kvd's "Alice' quotation. Says ...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.<br /><br />Julie M.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-91756800827148646252013-03-01T01:07:40.508+11:002013-03-01T01:07:40.508+11:00Life continues. There is no malice - priorities ch...Life continues. There is no malice - priorities change and are changed:<br /><br /> "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."<br /><br />Thank you, my friend.DRKWhttps://www.blogger.com/profile/10974920542410321055noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-16782324550584038232013-02-28T19:56:51.487+11:002013-02-28T19:56:51.487+11:00Reading Denis' post and Ros' comments make...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.<br />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!<br />Being close to death at least three times has made the conversation that Denis is helping to bring to the fore a necessity.<br />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.<br />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.<br />Just saying.Alisonnoreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-63257448946923218372013-02-28T18:43:33.837+11:002013-02-28T18:43:33.837+11:00Denis, if you will persist in writing these though...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)<br /><br />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: <i>Oh Mouse, do you know the way out of this pool of tears? I am very tired of swimming about here.</i><br /><br />kvdAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-55561668110296196742013-02-28T17:28:57.042+11:002013-02-28T17:28:57.042+11:00I don't like saints - neither the "real&q...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.<br /><br />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.<br /><br />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?<br /><br />Saintly, schmaintly<br />David Strattonhttps://www.blogger.com/profile/12984545702812009155noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-13454755450987237212013-02-28T17:10:43.768+11:002013-02-28T17:10:43.768+11:00Yesterday I carefully wrote a response to your com...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.<br /><br />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.<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />My thoughts, and admiration, go to you, kvd.<br />Roshttps://www.blogger.com/profile/13339472107640597921noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-48825761604932631462013-02-28T15:24:05.599+11:002013-02-28T15:24:05.599+11:00All the discussion generated by this blog posting ...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.<br /><br />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. <br /><br />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.<br /><br />So, as long as the air is filled with <i>chatter</i> 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... <i>anything.</i><br /><br />In other words, silences can be minefields for clear communication – and in the end it's no-one's fault.<br /><br />And sometimes it's a matter or plain <i>can't.</i> 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.<br /><br />If I give wrong cues, of course it's misinterpreted. If others give wrong cues, the result's the same. Miscommunication.<br /><br />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. <br /><br />In my present state, even being sent a <i>long </i>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.<br /><br />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.<br /><br />Speaking of which, I'm going to make this a separate blog posting, which may direct interested people back to these heartfelt responses.<br />Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-6955609935169934012013-02-28T12:44:21.907+11:002013-02-28T12:44:21.907+11:00I have read this thread on horses, elephants and t...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.<br /><br />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.<br /><br />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.<br /><br />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.<br />Anytime, Ros, anytime.<br /><br />Kelly<br />Woodsidehttps://www.blogger.com/profile/16217848452362767399noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-40416163161950739652013-02-28T12:40:58.871+11:002013-02-28T12:40:58.871+11:00My experience is nothing compared to those who hav...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. <br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.Joanhttps://www.blogger.com/profile/04715081266571704126noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-24136383937194885882013-02-27T16:38:06.474+11:002013-02-27T16:38:06.474+11:00Ros, I promise you my 'that was easy' was ...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.<br /><br />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.<br /><br />You have my hopes that life will sometime get easier to 'process'.<br /><br />kvdAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-81722006132955883602013-02-27T16:14:32.994+11:002013-02-27T16:14:32.994+11:00I am so sorry, KVD, if I have been clumsy here. I ...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?" <br /><br />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. <br /><br />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.<br /><br />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.Roshttps://www.blogger.com/profile/13339472107640597921noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-35435872403390674742013-02-27T15:15:07.657+11:002013-02-27T15:15:07.657+11:00'We are too busy, too exhausted, our minds fil...'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.'<br /><br />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 :-)Traceyhttps://www.blogger.com/profile/09920294359715307782noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-14548340778732754012013-02-27T15:10:09.845+11:002013-02-27T15:10:09.845+11:00"There - that was easy!" No it wasn'..."There - that was easy!" No it wasn't Ros, but I know what you mean.<br /><br />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:<br /><br /><i>"... 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.<br /> <br />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.<br /> <br />(link)<br /><br />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."</i><br /><br />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.<br /><br />kvdAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-56641193947833954202013-02-27T14:47:09.309+11:002013-02-27T14:47:09.309+11:00KVD wrote: "Who cares for the carer?"......KVD wrote: "Who cares for the carer?"... 'everybody does, but no-one can'.<br />And Tracey wrote: "Who cares for the carer?<br />From my point of view, no-one. Not in any meaningful way."<br /><br />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.<br /><br />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". <br /><br />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). <br /><br />It would be a help if you simply WANTED TO UNDERSTAND. That's all.<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />(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.) <br /><br />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".<br /><br />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. <br /><br />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.<br /><br />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."<br /><br />There - that was easy!<br /><br /> Roshttps://www.blogger.com/profile/13339472107640597921noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-31367762808977000592013-02-27T13:55:33.585+11:002013-02-27T13:55:33.585+11:00PreciselyPreciselyDavid Strattonhttps://www.blogger.com/profile/12984545702812009155noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-44406510721007823352013-02-27T11:13:55.434+11:002013-02-27T11:13:55.434+11:00I had this response written when I went back to ch...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. <i>[Write responses in another program, stupido – haven't you learned yet?]</i> <br /><br />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.<br /><br />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.<br /><br />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. Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-70337311398061404252013-02-27T11:10:41.116+11:002013-02-27T11:10:41.116+11:00The second-last paragraph of that was always meant...The second-last paragraph of that was always meant to read:<br /><br />"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."Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.comtag:blogger.com,1999:blog-5722735165669239585.post-29512436755568136852013-02-27T10:31:58.163+11:002013-02-27T10:31:58.163+11:00This is the continuing and inconsolable agony of t...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. <br /><br />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.<br /><br /><i>It <b>is</b> easier to be the one being cared for – except for that silent neverending scream.</i> 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.<br /><br />And she has hers.<br /><br />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. <br /><br />You, David, are saying the same thing, or I'm very much mistaken. I'm not, am I?Denis Wrighthttps://www.blogger.com/profile/12786035137418348609noreply@blogger.com