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.