There are many days when I talk to others with dementia who tell me about how they feel when people don’t believe they have dementia, or who say things like you aren’t any different to me, or I can’t see any signs of dementia in you, and so on. It is demoralising and ends up being a burden, and I am starting to ponder on whether perhaps it is the greatest of all on the list of dementia burdens. The burdens are many, and not remembering things, faces, names, objects and events in your own life is definitely difficult to live with. Forgetting how to do simple things, yes, as simple as what to do in the shower, or how to make a cup of tea, is a burden. Having your words get mixed up is embarrassing, and a burden. Not remembering you went out for dinner last week is not just annoying, but also a burden. Why are these things burdens you might ask? Well, put your feet into our shoes, feel how it feels, think about how embarrassing and humiliating they might be when they happen many times a day, every single day. Think about how much of a burden it is to not always be able to easily work out how to use a calculator any more, without the effort of it being like an exam, when this is something you have done all your life. Imagine how it feels when you hear about people, supposed friends even, who have been talking behing your back, claiming you are lying about having dementia, without the decency to speak to you in person. If you have been ‘lucky’ enough to survive serious illness, or ‘lucky’ enough to be doing well with dementia, this is used as fuel against you; instead of being pleased for you, they instead use it to justify their opinions. Actively and publicly doubting a person has dementia, is cruel, demeaning, and no different to calling them (and their doctors) a liar. Other illness like cancer, Parkinson’s, MS, diabetes and so on don’t seem to require the same amount of scrutiny as dementia. When someone close to me told me he had diabetes and then throat cancer, not once did I say to him ‘that can’t be right’. When a close friend had depression, and then was diagnosed with MS, not once did I question or doubt her, even though she looked 100% well and didn’t ‘seem’ depressed. Almost every person I have ever spoken to with a diagnosis of dementia has experienced the burden of frequently not being believed, or at least being doubted. It seems a person with dementia needs to be in lockdown for many to believe the diagnosis, a challenging and sad fact of the life for a person with dementia who is still functioning well publicly most of the time. I spoke at an event yesteday and talked publicly about this, as I feel it is something that needs highlighting as so many more people are being diagnosed in the earlier stages of the disease, and then choosing to ‘come out’ about their diagnosis. In 30 years, I hope we will look back at this time as we currently do about other things that most people now openly acknowledge and accept their attitudes towards were once discriminatory and hurtful. Hopefully education is the key to changing attitudes and behaviours.
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Whenever, i have heard that someone has…illness, i instantly believe that and never deny it, regardless of how they look.
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Great to hear Sam
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I totally agree with what you have said
I’m not sure if people react that was cos they dont want to believe it
I had a guy get very abusive with me when we pilled out from the disabled bay
He said why wasnt my badge on the dash board I pointed out that the car was moving and I’d got it in my hand so it wouldnt distact the driver by slipping about
No apology just a fist shaken at me
I find having to give up driving one of the hardest things- i feel I have lost some of my spontenaiety
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yes, no longer driving definitely does that, as well as making us oh so damned dependent on others. hugs 🙂
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As a carer for my partner with Younger Onset Dementia, I used to hear this comment all the time – “He seems fine to me”. This of course, was after a 20 minute conversation. It would drive me crazy! But when I step into my friend’s well-meaning shoes, I see that it isn’t so much that they are expressing concern about my partner, but it was their way of measuring up how they stood in relation to dementia. And since there is such a lack of awareness and a crippling stigma about the disease, this is as close as they can get to understanding it.
Your speaking up against the stigma and sharing what it is like to have dementia is so important.
Thank you so much.
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I have to keep reminding loved ones of this same thing. Keep having to tell them over and over that we have no idea how much hard work is involved for mum just to get out of bed, have her shower, get dressed and get to the kitchen for her coffee.
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Bless you for doing it xo
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Hey Kate,
Remember, while people are still disbelieving you are still high functioning, when they start believing, well, that is when I would start worrying! Keep up the discussion. As I often said to my Mum about her issues, “if we don’t tell them, how will they understand?”.
Cheers
Elizabeth
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Hey Elizabeth, that is such a great way to think about it!! Thanks for your insights. Cheers to you too 🙂
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hear hear, we had a similar incident years ago.craig (hubby) had knee op so was on crutches for a few wks, we then went with freinds at the barossa wine tasting and pulled the car into the wheelchair access, a man came out and was about to tell us to move until he saw us get crutches out from the boot, he did a quick turnabout, not the same i guess but similar. just because we look “normal” what is normal anyway, keep up the good work kate. to the moon and back xxxxx
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I agree here, I wonder how dare people look and judge, how dare they not put themselves in others shoes. I have a sister who has a disability parking ticket due to an accident many years ago and have had an ankle replacement and the looks we get when we pull into the spaces WITH the sticker I have verbally tackled many about staring and opinions. It is terrible, keep going
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Your sister’s experience with her parking permit is very similar, people are so judgemental as if you use it and are not in a wheelchair or using a stick, same damn thing!! There was a wonderful story published some tome ago about this, written by a disabled girl who drives a red sports car, and she is often abused as it is assumed people who are disabled should not drive sports cars either!! I’ll try and find it, as this topic is a good one for a future blog. Thanks for being back on line too xx
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