tag:blogger.com,1999:blog-3254078482490768003.post3292026797091843476..comments2021-11-26T10:09:16.570+00:00Comments on (Dementia Just Ain't) Sexy: "Truth" or "Lies"?Ming Hohttp://www.blogger.com/profile/06208056097591144994noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-3254078482490768003.post-12223587638242718482017-05-23T13:56:07.089+01:002017-05-23T13:56:07.089+01:00Hi, Julia. Thanks for commenting.
I think ther...Hi, Julia. Thanks for commenting. <br /><br /> I think there is getting to be a wider acceptance now in (specialist dementia) professional care of "white lies" or collusion - with the caveat that it should be aimed solely at supporting the wellbeing and contentment of the person with dementia, not just to make life easier for the carer/careworker.<br /><br />It's perhaps less accepted in general care settings, where more understanding of and training in dementia care is needed; and I'd say it presents more practical difficulties within families and in the domestic setting, where it can cause emotional conflict or have a knock-on beyond the moment, as discussed above.<br /><br />There are always going to be ethical issues, which is why that Mental Health Foundation/Joseph Rowntree enquiry and report is so interesting and helpful as reference; the touchstone, as ever, is the best interests of the person with dementia - but it's not always easy to decide what those best interests are, either in the moment or longer term; and I think there can sometimes be a conflict of interests within a family relationship, which should not be discounted for the sake of both parties' mental health. <br /><br />In my own experience, as a sole carer while mum was still at home, I found it hard always to go along with her delusions, which were sadly more often negative than positive. (C.f. your experience with your mum being upset to think your sister hadn't visited, my mum often thought that about me - but there was no-one to present the corrective point of view...)<br /><br /> In a professional care setting, I think it can be easier to distract from such dilemmas in the moment and move onto something else, whereas obsessions can be much harder to pass over in a 24/7 one-to-one situation. <br /><br />However, what I have learned is there is no one "right answer" for either the individual or people with dementia in general. Everyone's experience changes through stages of the dementia journey and from moment to moment. We all have to negotiate each moment and phase as it comes. So whatever works for you and your loved one, is the "right thing". <br /><br />All the best to you, your sister, and your mum.Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-48436160846208229142017-05-23T10:35:54.348+01:002017-05-23T10:35:54.348+01:00Ming Ho Thank you for this post, I find it easier ...Ming Ho Thank you for this post, I find it easier to collude with mum's 'delusions' where they are helpful to her self esteem - such as she believes she works in the home and that is why she is there. I have encouraged the care workers in the home to do the same. Generally they oblige but on some issues it does raise issues for them. I would suggest there is a fourth approach - which is to not to contradict in the moment, but then later reassert the truth if that truth is helpful. For example, my mother previously said that my sister doesn't visit. So I go along with it when she says it, 'Gosh - that's miserable!' and in that moment I am showing empathy. Then later I find a way to drop into the conversation that my sister visited on a specific day, and share some of her news. I also lie outright - I tell my mother she is getting better - that she is just staying in the home one more night etc. If it makes her feel better in that moment then as far as I am concerned that is good. I have seen some of the uneasiness about this amongst the professionals, so I will be very interested to read the literature review you reference.Juliahttp://juliasdementiablog.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-43594242201377151212015-08-20T15:44:09.986+01:002015-08-20T15:44:09.986+01:00Thank you. It's a really difficult balance; n...Thank you. It's a really difficult balance; no easy answers, but I feel that in the drive to espouse a positive approach for the person with dementia the knock-on effect for family can sometimes be overlooked. <br /><br />It's important to remember that what works in professional settings may be more complex at home or for family carers.<br /><br />Also I may update this piece (or add a new post) to consider the impact of anosognosia - commonly known as "lack of insight" - which may not be fully understood by family and friends; this is not, as it often seems, "denial" of symptoms, but the *clinical* inability to acknowledge any manifestation of illness. (See link in right-hand column, under Help & Advice.)<br /><br />I certainly wish I'd known about it years ago, when I was endlessly holding on, in the hope that mum would one day recognise her declining capabilities and be able to address her needs and discuss support with me. That day sadly has never come.Ming Hohttps://www.blogger.com/profile/06208056097591144994noreply@blogger.comtag:blogger.com,1999:blog-3254078482490768003.post-13544733059082206412015-08-20T14:54:10.119+01:002015-08-20T14:54:10.119+01:00This is really interesting Ming - we have just got...This is really interesting Ming - we have just got to the point with mum where she is confabulating and so far we are colluding with it but I can see how over time this might diminish my dad's opinions and identity. We have just been on holiday together and mum was adamant that we had been there before. We started to correct her but to make life easier we just ended up agreeing. This then altered the entire conversation for the rest of us and undermined the positive experience we had been trying to recreate (i.e. fond memories of previous family holidays). You are absolutely right that we need to ensure that primary carers do not end up existing in some virtual reality and become even more isolated.<br />Anonymousnoreply@blogger.com