{"id":53366,"date":"2015-02-02T13:03:12","date_gmt":"2015-02-02T13:03:12","guid":{"rendered":"https:\/\/www.transcend.org\/tms\/?p=53366"},"modified":"2015-05-05T21:26:08","modified_gmt":"2015-05-05T20:26:08","slug":"what-they-dont-tell-you-about-dementia","status":"publish","type":"post","link":"https:\/\/www.transcend.org\/tms\/2015\/02\/what-they-dont-tell-you-about-dementia\/","title":{"rendered":"What They Don\u2019t Tell You about Dementia"},"content":{"rendered":"

My mum was diagnosed when she was 64 and I was 30: now, instead of going out for coffee together, I\u2019m desperately feeding her hospital jelly.<\/em><\/p>\n

 <\/p>\n

\"\u2018They<\/a>

\u2018They don\u2019t tell you about the hours of bureaucracy and meetings with social services you have to trudge through, when what you desperately need is some advice and support.’ Photograph: Guardian<\/p><\/div>\n

28 Jan 2015 – <\/em>My mum doesn\u2019t know who I am. Sadly, I don\u2019t mean that in an angsty way \u2013 she literally has no idea who I am. Sometimes I\u2019m her sister. Sometimes I\u2019m her dead mother. Once I was Shirley Bassey, which made for an interesting evening. My mum was diagnosed with dementia with Lewy bodies<\/a> three years ago, when she was 64 and I was 30. She\u2019d just retired, and we were looking forward to spending more time together.<\/p>\n

I\u2019d spent my 20s doing my own thing, having selfishly assumed that we\u2019d have lots of time to get to know each other properly when I got bored of clubbing. I was wrong. Instead of visiting coffee shops, we ended up visiting the memory clinic<\/a>. After months of appointments we were finally sent home with a diagnosis, an information leaflet and a six-month review booked in to see how we were getting on. I imagine it\u2019s a bit like going home with a newborn baby, but with less support and no balloons. Having previously struggled to even take care of a houseplant, I was fairly apprehensive at the prospect of becoming a carer.<\/p>\n

As mum\u2019s dementia<\/a> progressed I came to realise that despite all the meetings, visits and consultations you have to go through to even get to the diagnosis, nobody actually tells you about the reality of this horrendous disease. They don\u2019t tell you how to deal with your previously gentle mother swearing at you, or that she\u2019ll hit you around the head as you desperately coax her into the bath. Neither do they tell you what sort of nappies to buy when she becomes incontinent, let alone how you\u2019re supposed to persuade her to wear one or stop her taking it off and stashing it in a pillow case. I thought I might be changing nappies at some point in my 30s, but I didn\u2019t imagine it would be like this.<\/p>\n

They don\u2019t tell you about the hours of bureaucracy and meetings with social services that you have to trudge through, when what you desperately need is some advice and support. They don\u2019t tell you that it takes six months for them to assess whether you\u2019re entitled to even get on the waiting list for advice and support. They don\u2019t tell you what to do when she thinks that the small boy you pass on your walk is her grandson, and tries to talk to him. Nobody tells you how to placate the angry parents who think they\u2019ve encountered the world\u2019s frailest child-snatcher. I had no idea what to say to the helpful passerby who insisted on intervening because he\u2019d mistaken her having a meltdown in the street for a geriatric kidnapping.<\/p>\n

They don\u2019t tell you how to deal with the crushing realisation that she\u2019s never going to phone you again, let alone see you get married or be a grandmother to your kids. Nobody tells you how to channel the anger you feel that your fellow thirtysomethings\u2019 lives now involve marriage, mortgages and children, and yours revolves around a terminally ill, confused old lady who doesn\u2019t even know who you are. They\u2019ve chosen their responsibilities; you\u2019d give anything not to have yours.<\/p>\n

They don\u2019t tell you that once she nears the final stage you\u2019ll spend hours desperately trying to feed her a spoonful of hospital jelly even though she\u2019s pretty much given up on eating, because you can\u2019t just watch her starve to death. It doesn\u2019t matter how distraught you are that she\u2019s wasting away before your eyes, or how much it upsets you to agree to the doctor\u2019s request for a DNR order<\/a>; this disease is relentless in its cruelty.<\/p>\n

Dementia<\/a> has robbed my mum and me of the time we were supposed to have, and I\u2019m still not sure how to feel about it when there\u2019s nothing tangible to mourn. \u201cWaking grief\u201d – that\u2019s what someone called it. When the person you knew is gone, but not gone. But it\u2019s not. It\u2019s a waking, sleeping, relentless cloud of despair that never quite goes away, even when you think you\u2019re OK. But then nobody tells you how to grieve either, do they? Especially when there\u2019s no funeral to go to, just an endless stream of pointless review meetings.<\/p>\n

___________________________<\/p>\n

Dawn Vance is a blogger and a carer. Neither role was planned.<\/em><\/p>\n

Go to Original \u2013 theguardian.com<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

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