tag:blogger.com,1999:blog-3254078482490768003.post6354702949248697205..comments2021-11-26T10:09:16.570+00:00Comments on (Dementia Just Ain't) Sexy: An Act of RemembranceMing Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-3254078482490768003.post-49366262954073924442018-12-19T22:51:03.326+00:002018-12-19T22:51:03.326+00:00Thank you. All the best to you and your mum. Thank you. All the best to you and your mum. Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-74060532626522043652018-12-19T22:44:07.118+00:002018-12-19T22:44:07.118+00:00Your story is very moving and helpful for me as I ...Your story is very moving and helpful for me as I am going through this with my mother. We had to put her in s care home , 5 years ago. It is hard not knowing what she is experiencing with Dementia. I an there with her on my 2 days just to be with her. Thank you again, your story is gelphel and encouraging. God bless you.🙏❤️Thompsonbhttps://www.blogger.com/profile/10274805038770192192noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-54034587179482580642018-08-30T17:51:18.351+01:002018-08-30T17:51:18.351+01:00this article is very interesting, very happy to re...this article is very interesting, very happy to read it, there is time and opportunity to be willing to play in our place too, thank you very much<br />toimhttp://prediksitogelwla.website/noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-15262707465209159972018-02-28T21:44:31.133+00:002018-02-28T21:44:31.133+00:00Thanks very much, Cestina, for listening to the pl...Thanks very much, Cestina, for listening to the play; glad it touched a chord with you. <br /><br />My sympathies with your situation. Sadly, it does seem that however much we try to advocate (with constructive comment, as well as complaint, and hoping to work with providers to solve issues), the corporate agenda moves on regardless. That said, we can but try; one day, somewhere, it may make a difference, and we would never forgive ourselves for not speaking up for those for whom we care. <br /><br />I agree that continuity is so important, and believe that providers could do more to support and nurture staff; but the financial background is so dire that money is seen as the primary issue, with impact on the individual (both client and careworker) under-prioritised. <br /><br />I wish you all the best with your own situation. Thanks again for listening, reading, and commenting. Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-21471015395426730032018-02-28T20:40:56.518+00:002018-02-28T20:40:56.518+00:00I just came across a link to your play on the Guil...I just came across a link to your play on the Guild website and have listened with tears in my eyes. Thank you so much for writing it. <br /><br />I have also just been reading selected bits of your blog and feel both heart-broken for you and sick to my stomach at what you have gone through with the home. It is particularly poignant at the moment because I have shared POA for a dear friend with vascular dementia who still lives at home, now aged over 100, and we are going through a similar, though less harrowing, experience after her very person-focused homecare agency was swallowed up by a comparative giant. We are now getting task-based care, rather than person-based, and a worrying number of the carers who were TUPEd across from the small agency have now left. Complaining seems to get us nowhere - we have seen more new carers in the past six weeks than in three years with the previous agency. And most of them only turn up once, the last thing one wants for a person with dementia. We are scared of shifting to a smaller agency because what is to stop the same thing happening again a few months down the line? At least at the moment there are still a couple of the former regular carers around....Cestinahttps://www.blogger.com/profile/03050699324845479257noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-46666577209696381202018-02-13T21:50:06.583+00:002018-02-13T21:50:06.583+00:00Thank you very much for listening and your kind th...Thank you very much for listening and your kind thoughts. There are so many of us in this situation. I hope it helps to know we are not alone. All the best.Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-39860033249745342322018-02-13T21:49:07.238+00:002018-02-13T21:49:07.238+00:00This comment has been removed by the author.Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-86173252062482759452018-02-13T20:22:11.817+00:002018-02-13T20:22:11.817+00:00I missed your astonishing play the first time roun...I missed your astonishing play the first time round, but caught it by chance this afternoon. My own mother died on Millennium Eve after almost ten years of dementia, and the slow loss of her still hurts. It was so good to hear acknowledged, through your work, the sense of abandonment and infantile rage we feel as the adult children of these parents. I was in floods of tears by the end of it, for you and her as much as for me and my mother. You have written something so truly compassionate and brave; thank you so much for joining hands with the rest of us.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-55306708859476195272017-05-14T14:11:13.860+01:002017-05-14T14:11:13.860+01:00Thanks, Alison. Yes, I think mum does know someth...Thanks, Alison. Yes, I think mum does know something of me and/or our life some of the time (& sometimes with a surprising & heartbreaking flash of apparent insight), but it's fleeting and inconsistent, so constantly disorientating - as I tried to capture in the play. <br /><br />Your name is familiar to me, but I was never in-house at the BBC; I don't think we've met? In the 90s I was a script exec at Zenith (script edited Hamish Macbeth among other things), sometimes developing things with BBC or visiting for meetings; then in 2000s, freelance as a scriptwriter on e.g. EastEnders & Casualty. <br /><br />Thanks again for your kind thoughts; all the best to you too, fellow traveller. x Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-66575372223616729842017-05-14T14:02:20.516+01:002017-05-14T14:02:20.516+01:00Just heartbreaking - I'm so sorry. I can ident...Just heartbreaking - I'm so sorry. I can identify with so much of this. I do think that somehow they know. My Dad met my eyes on the last time I ever saw him and I'm sure he knew just for a second that I was there and that it was me. You're a beautiful writer and your play really moved me and no doubt helped a lot of people. <br /><br />I wonder if our paths ever crossed at the BBC - I was there in the 90s in Drama and Arts. <br /><br />Sending love to you x<br />alisonhttps://www.blogger.com/profile/00297877834171816857noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-50611965023063891452017-05-12T00:57:09.001+01:002017-05-12T00:57:09.001+01:00Thank you. It is so hard to pin these feelings do...Thank you. It is so hard to pin these feelings down; it can only ever be a snapshot. But the more we talk about it, the more we realise we are not alone; so many fellow travellers. All the best to you. Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-45565444847826108102017-05-11T20:34:31.199+01:002017-05-11T20:34:31.199+01:00I have just finished listening to your play and th...I have just finished listening to your play and the tears are streaming down my face by the perfect way in which you've captured every emotion and feeling I myself felt from the time before the diagnosis as well as that ever relentless sense of loss , and the crippling longing to be properly remembered however fleetingly. My mum finally left me 3 years ago now and although I've grieved during that time the mum I now believe watches over is that very one who was and still is my heartbeat - the one who's hair and clothes and lipsticks are as they always were, the one who I would call every day and share the mundane with - this is the forever love she promised me . Thank you for putting into words what I've never been able to Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-89769915947281362202017-05-10T13:20:40.541+01:002017-05-10T13:20:40.541+01:00Agree about the 10 years thing; my mum was symptom...Agree about the 10 years thing; my mum was symptomatic for probably 15+ years before official "diagnosis" (which was only ever by observation from a consultant psychiatrist, because she would never agree to formal testing of any kind). That diagnosis was only finally recorded because by then I needed legal authority to manage her affairs to pay for care; no-one supported us before that crisis stage (and not much after! See post on importance of diagnosis in sidebar.)<br /><br />This is why I'm also frustrated at the media and campaign presentation, "a diagnosis of dementia is a life-changing event". Er, no; developing dementia is the life-changing event. Getting a diagnosis (or trying to get one) may be traumatic in itself, that's another story, but there's no clear-cut before and after point in practical terms and medically it's not an exact science either...Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-19384480991615396142017-05-10T12:59:36.784+01:002017-05-10T12:59:36.784+01:00I couldn't agree more. I am all for positive t...I couldn't agree more. I am all for positive thinking (especially for professionals and carers), and my mum has been extremely stoic up to this point, but so often now, she seems to be saying 'I've put a brave face on this, but I'm not playing anymore.' She is only 69 years old (11th year of Alzheimer's) so goodness knows how long she will have to bear life in this way. They say dementia patients tend to have 10 years of life from diagnosis but we both know this isn't necessarily the case (my theory is, that idea is skewed by historic lack of diagnosis until later in life).<br /><br />Thanks for the heads up re. your radio play. It is very timely and I will be listening 100 percent.Chabahttps://www.blogger.com/profile/03726977414835743355noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-46150896033016159482017-05-10T12:25:11.068+01:002017-05-10T12:25:11.068+01:00Thank you. It is endlessly perplexing and disorie...Thank you. It is endlessly perplexing and disorientating, emotionally and psychologically, for both parties. <br /><br />As you say, we cannot know what the other person perceives, even if they sometimes express thoughts and feelings, because it's constantly shifting from moment to moment, as is the means of expression. (I'm lucky in that my mum still retains the facility of speech, although it's declining; it's the content and context that have receded first.)<br /><br />One aim of my play (BBC R4 14.15 11 May) was to imagine the situation from mum's point of view; my grief and frustration, I believe, is mirrored by hers - the tragedy is that we still have each other, but neither can comfort or reassure the other because our planes of reference no longer align.<br /><br />And there are so many different states along the way, it's not a linear process; you may think you've reconciled yourself to one loss, but a random flash of insight casts that into doubt. <br /><br />(I've written about one such instance in my earlier post, 'I Don't Know Who You Are', in the sidebar links under Emotional Impact, as well as linked in the body of text above.)<br /><br />There's much emphasis now in the media and among care professionals on the positives - the faculties, interests, personality, feelings still retained to "live well" with dementia. That's absolutely valid for many people much of the time and would have been so for my mum for 10-15 years of her earlier symptoms; some may never progress beyond those earlier stages. But for those who do (and those who love them), the darker shades of the later journey should not be denied. <br /><br />I also believe that it's easier for professionals to focus on positives in those latter stages, because they don't have that lifetime of emotional investment and history of loss. <br /><br />All the best to you and your mum. Thanks again for reading.Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-33599863895350446622017-05-10T08:06:46.262+01:002017-05-10T08:06:46.262+01:00I have often wondered what my mum gets out of my v...I have often wondered what my mum gets out of my visits. It used to be smiles, laughter and chat but she is more agitated now and can't express herself. In all this I find myself desperate to know how much she knows about her predicament. Since she is teary sometimes I reckon she is more knowing than we all expect her to be, and that is painful. I am fascinated to discover your blog now that I am exploring the experiences of others. There is so much more to this than us being an unfortunate family who make small talk and sit together for the sake of honouring our mum. I want to be with her as she experiences this frightening time. Thank you Ming. I will read on.Chabahttps://www.blogger.com/profile/03726977414835743355noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-56176334135980772272017-05-08T11:59:17.532+01:002017-05-08T11:59:17.532+01:00Thank you. Sometimes all you can do is be honest ...Thank you. Sometimes all you can do is be honest about it, but it's constantly shifting, hard to pin down... Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-48567909401735455332017-05-08T11:40:26.290+01:002017-05-08T11:40:26.290+01:00What a moving post - I can totally understand the ...What a moving post - I can totally understand the devastation you must feel. You've really captured the slow grieving process of losing a mother to dementia, the relentless feeling of bereavement and loss. It's unlike any other condition in that regard - you lose your mum, she loses her daughter and nothing can be done to formally mark that loss but your act of remembrance will help others to feel less alone. Anonymousnoreply@blogger.com