The Dementia Taboo

Last year I had a rare night out catching up with some former colleagues over a drink and a bite to eat. Whilst it was great to see them I felt for the main part that they were tiptoeing around me and wondered whether I had a neon tattoo on my head emblazoned with the words “fragile; dementia carer please handle with care”. One of the husbands of the other girls was in remission from cancer and they all expressed concern over his recovery and yet in much the same way as Voldemort is referred to in the famous Harry Potter novels as “he who must not be named” dementia in many social situations becomes the elephant in the room. Now I’m not blaming my friends as I know it’s a difficult subject to broach and frankly some of the behaviours of many dementia sufferers scare the bejesus out of most of us but here’s the thing; it currently effects 850,000 people in the UK alone and by 2025 it will be over a million so chances are everybody at some point will know someone struggling with dementia.

Make no mistake Alzheimer’s is a killer and a destructive force in the lives of many, in much the same way as Motor Neurone, Parkinson’s, Cancer and any other progressive illness. There is no get out of jail card once you have been diagnosed and there is no recovery for this marauding killer that steals your loved ones right in front of you, piece by heartbreaking piece. One of the most bittersweet moments of my struggle was that I did not travel the old fella’s dementia journey alone for my bestie Barbs, was also fighting her own battle with her father who was also diagnosed last year. We’ve laughed & cried together, vented, raged against the injustice we have suffered at the hands of the social care system and shared advice in navigating the treacherous waters of Alzheimer’s but both of us have also sadly discovered that many of our other friends not knowing what to say to us have ended up saying nothing at all. Frankly, are we any less worthy of compassion simply because our loved ones no longer have the mental capacity that they used to. Is it any wonder that so many dementia carers feel isolated and alone?

So can I ask you to do just one thing for me today for all the families lacing up their boots to face another day of battle in their war against dementia; ask them how they are, drop them an email, write them a card, give them a call, offer to meet them for coffee or pop over to their house with a bottle of wine. Granted, Alzheimer’s has some appalling symptoms and causes sufferers to do fairly uncharacteristic things but I promise you, it’s not infectious and you can’t catch it. So go on be a good friend in the life of a dementia carer today after all what’s stopping you?

My wish for you is that you continue to astonish a mean world with your kindness #grandfather #grandad

My wish for you is that you continue to astonish a mean world with your kindness
#grandfather #grandad

23 thoughts on “The Dementia Taboo

  1. We’re taking a meal over to friends on Friday. He’s been going down for many years and has reached the stage where you’re not sure who you are going to meet, in fact you may meet two or three versions of the man in one evening. Can be disturbing, can be delightful. It’s never dull!

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  2. Seems to happen so often Dallas. People, so-called friends, back off because they can’t/won’t handle another’s problem. Jeez, it ain’t rocket science – stay connected, talk and behave like a normal human being.

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  3. A thoughtful conversation about dementia, Dallas! It is so easy to discuss physical ailments, but when there are mental incapacities we are at a loss as to what to say, to do, to respond. The decline of memory is akin to losing of self, of who we are, where we have been, who we have loved and who have loved us in turn. To love a person with dementia, is to remember for that person. When they forget, we remember, we celebrate, we recall those precious moments. We meet them where they are and become ever closer to ourselves. This then, is the story of humanity. Hugs coming your way.

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  4. Yep dementia is the white or is the pink elephant in the room? It is not rocket science that have a decent understanding of what a family is going through. I am sorry that this happened to you. Karma is a pay back bitch and it will come back to bite your “friend’s in the butt. They should be very ashamed; One never know when or where it will strike. It is best to become acquainted with this very sad medical diagnosis.

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  5. I am sad and angry people are leaving to your own devices during this difficult struggle! I hope you have opportunities to go out and get away from the situation for a time. This is one of the most stressful ‘jobs’ to have, and I think (just my opinion) that part of the reason no one brings it up is that it has become this generation’s Cancer, in that in previous generations, if you had Cancer, or your friend did, you whispered it in another room and you certainly never expected anyone to say anything direct to you or your family about it. Now, this does not mean people literally do not care. They really *don’t* know what to say. They do not have any experience with the condition or what it takes and requires from the people doing the caring, and so….. they dare not tiptoe into that dark garden. As with Cancer, it becomes incumbent upon you to let them know what it’s like. You get to be the light that guides these people, some of whom will be in your shoes soon enough, into the garden with you, so that you can show them what it’s all about. You are the educator in this situation.

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    • Beautiful & encouraging words Alison. I sadly fear that dementia is still talked about in hushed tones and carries a stigma which is generated through fear which is so very sad for many carers who after all are the unsung heroes in such cases

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  6. Hi, I’ve just come across your post in wordpress reader and it was so nice to read. I’ve been on the journey with my dad now for over 2 years, you do feel very alone and you feel very bad when it all gets too much for you and I quite literally feel like throttling him. The problem is he doesn’t know he has a problem, he lives in his own world, refuses to see a Dr to get a diagnosis, he lives alone, refuses help, goes out walking a lot, goes travelling about on trains, gets brought home by the Police in the middle of the night and during the day now and none of this is his fault and he forgets or makes up stories about it the next day. You just have to deal with it all and you go from one issue to the next. I have just started a blog ‘dadsdementiadiary’ which is helping me record what happens on a day to day basis and in some ways its proving to be very therapeutic, I’ve also registered now as a Carer so you can talk to others in the same situation. Thank you and take care. Lx

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    • Hello Georgia and I so feel your pain. Our old fella had a stroke and overnight went from driving his car to not being able to tie his own shoelaces. He deteriorated rapidly over 7 months so we had a crash course but we didn’t have to make the heartbreaking decision of a care home that was decided for us. It’s normal to feel so overwhelmed that you begin to feel frustrated so I wish you courage and strength on your journey, my friend

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  7. Being a bit of an introvert, losing contact wasn’t much of an issue for me, but I suspect that it bothered the patient a bit more in his and her brighter moments. Either way, it’s a shame that folks are so skittish on so many health issues. My late husband commented that folks never looked directly at him when he’d race around in his wheelchair. He was the extrovert and having folks shy away had to hurt tremendously.

    It’s good you had your bestie to share with.

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  8. It’s been awhile since I’ve read any blogs but yours is still one of my favorites and since I follow you on Facebook, I saw the hilarious story about the time you and your dad had to help your neighbors unclog their toilet after one of their daughters decided to “bury” their dead guinea pig in the sea via the house’s plumbing system.

    I must have offered you condolences for your dad, but in case I haven’t (and I know it’s been a few months), my deepest and sincerest condolences and best wishes to you and your family. My grandmother had dementia (not Alzheimer’s) and it was so depressing to watch her waste away so I know to an extent what your family has been through. My mom had to make medical decisions for her and the hardest one was when she and her siblings decided to have the surgery to amputate her leg below the knee since the limb was starting to rot away from gangrene and disuse from being stuck in a wheelchair. At that point my grandmother was in no fit mental state to make decisions for her own medical care, though my mom did ask her since my grandmother was a nurse before she retired and apparently her answer was “Well get rid of it then!” As the disease progressed, so did her power of speech and mobility. Towards the end she only spoke gibberish and barely registered we were there. Dementia is really a terrible disease and my hope is that science will one day find a cure.

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    • Hello & belated Happy New Year to you; for obvious reasons I haven’t been able to frequent the blogging world much over the past 12 months. When I first read your lovely comment I had to go away & have a quiet weep and you’re right dementia is a hateful creature. It’s hard to think that within 9 months of my Dad’s accident he would be gone having lost half his body weight, not being able to eat & to have aged overnight twenty years and unless you have been there it’s very hard for people to understand the overwhelming anguish facing carers. I hope your 2017 rocks, my friend & its always good to hear from you

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