What does dementia feel like?

A question being asked everywhere since Still Alice. Let me first say, the disease is progressive and affects everyone differently, but this is my synopsis of ‘what it feels like’ for me.

Every day is different. Some days it feels like Alzheimer’s has never entered my life and some parts of some days are like this too.
On bad days, it’s like a fog descends on the brain and confusion reigns from the minute I wake up. On these days it feels like there’s so little in the brain left to help you get through the day. I rely on my phone, iPad, calendars galore – all religiously kept up to date. As soon as an appointment or meeting is arranged it goes into everything and onto the calendar – that’s the only way I remember. I’m so lucky to have always been highly organised so didn’t have to learn that as a new skill. For those who have always been unorganised, the task must be very challenging.
I’ve tried managing without them to see if I’ve made things worse by not making my brain work to remember these things. However, my brain just doesn’t seem capable of remembering. Simple things like taking medication at a set time – I’ve tried remembering without alarms but the task just didn’t exist. I still find it remarkable that when my alarm goes off at 8pm it’s a surprise that there’s a reminder to take medication. So I don’t agree with those who say you should try and remember without alarms as you’re not using your brain. I agree we should use our brain constantly to keep it working but my short term memory is diseased so no amount of usage will make it any better – I think. My take on this part is that we simply have to learn to adapt and use new methodologies to help compensate for the bit of our brain that is no longer working.
The feeling of confusion is also heightened on some days. I have to really work hard at remembering the day of the week and what I’m suppose to be doing. This feeling I can liken to a necklace being all tangled up and having to sit there and untangle the knots.If you’re feeling calm, you sit there patiently and one by one untangle the necklace and work out the reality of the day. If panic rises, it’s like when you’re impatient with the necklace and give in and feel like you’ve lost the use of the necklace. Panic rises inside you and you find it impossible to work out what day it is and what you’re suppose to do. On these occasions it can feel like your head wants to explode as you feel out of control.
Again, I feel lucky, in so far as I can relax and chill quite easily. I can stay calm and not panic usually. My way of dealing with these moments is to tell myself it’s the disease and the fog will clear eventually, so I’ll just sit quietly and wait. It’s a bit like a games of chess – you sit waiting for your opponent to play and then try and outmanoeuvre……..
Losing spatial awareness can be frightening. My worse moment is still the time at work when I didn’t know where I was when I was stood outside my office. Again, it’s telling yourself that the moment will pass – it’s the disease in your brain testing you. If you can keep in control and not panic, it helps hugely. I’ve had other mini moments like this recently, but coping in this way makes them less traumatic.
Not being able to find the right words is a daily occurrence. I use to get frustrated and annoyed at this. But I’ve found it makes the disease seem so much worse if you let it get to you like this. If I’m giving a talk, I plan meticulously and have everything written down. I read and re read my notes in the hope that something will remain in situ and where once I would try and wing it, I now never would. If I forget peoples names, it is annoying but I now think, ‘what does it matter’ and simply ask them again, and again……and hope they understand. If they don’t understand it’s their problem not mine. If they can’t see beyond the disease they are very shallow.

If someone newly diagnosed asked me what advice I would give them it would be not to panic at the diagnosis. Don’t give in. Adapt and find new ways to compensate for the parts of you that don’t function as they use to. See it as a challenge to outmanoeuvre this cruel disease. Easy to say when faced with the diagnosis, but the only way I’ve found to cope with today and tomorrow.

 

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

17 thoughts on “What does dementia feel like?

  1. Dear Wendy, thank you for explaining with such clarity and honesty what it is like, from the inside out (as Richard Taylor says), to have dementia. It think this article would help many people in my country. May I ask for your permission to translate it into Italian and post it on the web site of the association I represent? (novilunio.net). A big hug from Italy. Eloisa

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      1. Hi Wendy, today I translated into Italian and re-posted your article on the web site of the local charity I represent, Novilunio. Here’s the direct link http://t.co/xFJAjIk6K3. Thank you again for the great post! xxx

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  2. Wendy you nailed it. Thank you so much. I’m facing round three towards a diagnosis of Alzheimer’s (or not). I’ve got to see a psychologist at the memory clinic at the end of the month and dreading it. The way you describe living with dementia is exactly the way I feel and I’m frightened. Not frightened at the thought of having Alzheimer’s so much as being frightened that I’m going to be fobbed off with a diagnosis of depression, which I’ve lived with for years on and off. I know what I’m experiencing now isn’t depression but to see it written down is such a relief. It’s given me confidence. I share many of your blogs + your videos to my ‘Joan’s Descent into Alzheimer’s’ Facebook page (Joan was my mum, she had early onset Alzheimer’s). You’re a brilliant ambassador Wendy,

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  3. Alzheimer’s & Dementia is a constant in both my spouse’s and my family trees. Eight documented cases. Trying to prepare emotionally for the possibility that one (or both) of us could be next. I tell myself, “There’s no place we’re going that God isn’t already there waiting for us- and He never forgets.” That doesn’t stop emotional surges that happen when you find your driving glasses in the fridge in a grocery store bag with the milk. Yes, now I remember putting them in that bag, fumbling for my keys at the door of the house. Is this one of those dumb things everyone does? – Or is this one of the first stepping stones into the darkness of dementia? There are no answers. When I drive through heavy fog or snow, it’s always easier and less frightening when i am following the tail lights of another car in front of me. Thank you Wendy for just keeping your tail lights on.

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  4. Thank You Wendy … I just found your site. And you seem to be (in this article) exactly where I am, at 62 years old. I can relate to everything you mentioned … so it’s great to learn some ways to cope, to function, to not give in to despair and to keep living the best / upbeat / happiest way we can. It’s so hard having a conversation with someone, then walk away not remembering what they said. It’s hard that we KNOW we don’t remember anything, not to mention, very embarrassing ! Looking forward to following your blogs. LAUGH, IF I can remember ! Will make a note immediately ! I guess you can imagine how many notes I have all over the place ! 🙂

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