tag:blogger.com,1999:blog-3254078482490768003.post8253766706001638685..comments2021-11-26T10:09:16.570+00:00Comments on (Dementia Just Ain't) Sexy: A Stranger In My Home TownMing Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-3254078482490768003.post-58649469667298637152014-12-01T20:53:01.065+00:002014-12-01T20:53:01.065+00:00Thanks, Carolina; appreciated.Thanks, Carolina; appreciated.Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-13869281905687021162014-12-01T16:47:10.180+00:002014-12-01T16:47:10.180+00:00Ming,
This is a wonderful account of the struggle...Ming,<br /><br />This is a wonderful account of the struggles that distance caregivers like you are forced to go through. I thought this bit was specially touching:<br /><br />"And with no personal connection, nothing to root me in that community by everyday engagement [...] I’m an outsider."<br /><br />If anyone else reading has a relative who is seriously ill with a life-limiting condition and lives far from them, please consider filling in a survey for Oxford Brookes University: <br /><br />https://jfe.qualtrics.com/form/SV_57rCDTlSu2ZVrqR<br /><br />Many thanks and best wishes, <br /><br />CarolinaCarolina Casanas i Comabellahttps://jfe.qualtrics.com/form/SV_57rCDTlSu2ZVrqRnoreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-32085454348631536912013-04-22T19:10:46.528+01:002013-04-22T19:10:46.528+01:00Thank you Ming, the blog is at http://sussexrokx.b...Thank you Ming, the blog is at http://sussexrokx.blogspot.co.uk/.<br /><br />I did post a public link on Twitter today under ZkidooKreativ (started when I was still a Graphic Designer), so you might find it there as well.<br /><br />At the moment it is just about adapting readily available Digital Photo Frames to create a Day Clock, to assist dementia sufferers identify which day it is and what part of the day it is, i.e. Morning, Afternoon, Evening or Night, rather than actually trying to tell them the time.<br /><br />As we know, time becomes meaningless, but for a while they can still relate to periods of the day. It can also help them maintain a daily routine.<br /><br />I didn't see the Maureen Lipman programme, but will look it up tonight, I'll do the same with the sites you've linked.<br /><br />Many thanks, MartynMartynhttps://www.blogger.com/profile/06959631518843523408noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-84456364683264264842013-04-22T18:04:12.963+01:002013-04-22T18:04:12.963+01:00Hi, there -
Thanks very much for your thoughts. ...Hi, there - <br /><br />Thanks very much for your thoughts. We do seem to have had a very similar experience. <br /><br />Did you see the programme about memory that Maureen Lipman presented the other day? (Available on UK BBC iPlayer for another few days.)<br /><br />http://www.bbc.co.uk/iplayer/episode/b01s0zvx/Maureen_Lipman_If_Memory_Serves_Me_Right/<br /><br />While it was not specifically about dementia, there were some interesting research theories about the importance of early years in memory, which support the anecdotal evidence of many carers of people with dementia that their loved ones are most fixated on childhood and youth. Often the "home" they continually yearn for is not a real place, but home they remember from schooldays, when their parents were there to look after them - it's more a sense of this security and unconditional love, although visualised in terms of the place they lived in at that time. <br /><br />If you were to take them back there now, they would probably still want to "go home", because the reality wouldn't be the same as the memory - and crucially the parents would not be there. My mum still asks every day about her parents, as do most of the residents in her home; and yet she sometimes thinks I'm her mother too!<br /><br />I'll look out for your blog - please post me a link on Twitter, if you're on there (or on here, if not). Are you familiar with the other sites I linked on my first post in February, 'We're Not All Ancient, You Know?' - some good ones there, set up by carers to help others with their experience, as you say.<br /><br />Thanks again for reading; and all the best with your mum. <br /><br />Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-26057457786346172692013-04-22T15:42:51.132+01:002013-04-22T15:42:51.132+01:00Hi Ming, I can totally relate to what you are sayi...Hi Ming, I can totally relate to what you are saying. I'm a full-time carer for my own 86 year old Mother, who also has dementia.<br /><br />This cruel disease not only steals the sufferer's memories, but loved one's, as you so clearly state, also see their nearest and dearest slowly disappear.<br /><br />My Mother still has memories of the past, but like yours, much of it is from a time before I was born. She wants to visit her Mum, talking about her as if she is just around the corner, when in reality she died in 1962!<br /><br />I'm more than happy to be Mum's main carer, but as we all know, caring can be a difficult and lonely existence.<br /><br />I also have a newly started blog, but with a different angle. From my experience as a carer, I'm looking into ways of helping others caring for elderly parents with dementia.<br /><br />Keep up the good work.Martynhttps://www.blogger.com/profile/06959631518843523408noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-16173138223726385612013-04-05T17:10:26.928+01:002013-04-05T17:10:26.928+01:00So sorry to hear about your mother too; it is hard...So sorry to hear about your mother too; it is hard to explain to those who haven't (yet) lived with it the strange ways the memory can retain some things, but not others - in particular, as you say, emotional context. <br /><br />For a long time, while I was still in the daily thick of it with my mum, I didn't want to write about it, anything but! I also felt I shouldn't, out of respect for her privacy. <br /><br />With some distance, now that she is in care and less aware of the wider world and media, I think it is important to document these thoughts and feelings for others who are going through them and are trying to make sense of it alone; also to drive the message home for policy-makers that conditions such as dementia are not simply fiscal problems to be thrown the occasional political sop, but a widespread human crisis that can affect anyone - whatever their station, personal circumstances, or previous capacity. <br /><br />While some can "live well with dementia", and hopefully understanding and support will improve to make this possible for more, there's no denying that it can be a devastating and all-encompassing syndrome, not just for the person directly experiencing it, but also for their loved ones, friends, and neighbours. <br /><br />No-one wants to think about it until it directly affects them - but with an ageing population, it will touch more and more of us.<br /><br />Thanks for reading and taking the time to comment. Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-19100268487096935552013-04-05T14:03:41.279+01:002013-04-05T14:03:41.279+01:00If anything is the robber of souls, dementia is an...If anything is the robber of souls, dementia is and your account sets out every sneaky, thieving, violating detail of it. My mother died last year, not of dementia but of the impact that had on her will to live after my father died. The damage to her brain was largely subcortical so that she remembered a great deal but only if prompted and then without emotional context. Unfortunately, the profound emotions of anger and frustration and then grief went unexpressed until she finally turned her face to the wall and refused to eat or drink. My sister and I, travelling the 300 miles to her care home, missed her by two hours. In truth though, we had lost her some years ago. Articles like yours expose the dreadful picking away at the person that dementia perpetrates. Hopefully, they also begin to expose the desperate needs of everyone affected, dispel the fears, and eliminate the shame some people feel because of this dreadful cluster of diseases. Thank you for posting. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-71973548228770189632013-04-02T19:34:09.549+01:002013-04-02T19:34:09.549+01:00Thanks, Gail; kind words.Thanks, Gail; kind words.Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-56350519672034295102013-04-02T17:47:09.634+01:002013-04-02T17:47:09.634+01:00You're remembering the past for two now. Beaut...You're remembering the past for two now. Beautiful piece, Ming. And thank goodness your mother is safe, cared for and loved.Gail Renardhttps://www.blogger.com/profile/02430117719586016166noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-38772347537231983312013-04-02T15:37:47.254+01:002013-04-02T15:37:47.254+01:00Thanks, Gill. I hope so. (Making me tearful now!) ...Thanks, Gill. I hope so. (Making me tearful now!) <br /><br />I feel I have to write about all those memories now, before they're gone forever. Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-253571102241752692013-04-02T14:30:26.406+01:002013-04-02T14:30:26.406+01:00This is incredibly powerful and incredibly sad, Mi...This is incredibly powerful and incredibly sad, Ming. You write so well and this post deserves to be read far and wide. People do not realise how isolating dementia can be and how painful everyday experiences can become. <br /><br />It takes courage to view the world from the perspective of the person living with dementia and to take the lead from them. It is desperately hard to accept that carrying on with 'doing what we've always done' because "you've always enjoyed that, haven't you Mum" may not be in the person's best interests. <br /><br />Your Mum would be very proud of you and delighted that you have these wonderful memories of your childhood and happier times together.Anonymousnoreply@blogger.com