living with dementia is like a bad dream if you've ever had a bad dream where you dream that you're
at school and you have to sit an exam and you haven't prepared and you get that terrible grip
in your stomach like how could this have happened and sometimes you wake up in the morning and
that's how it feels because you're like who am i where am i you have to reorientate all over again
every day it's kind of like groundhog day who am i today what am i today where am i today
i was diagnosed with dementia just over 10 years ago i was working for
APRA. It's the finance regulator i was really successful really really happy with my work
i just couldn't manage a meeting and i was forgetting people's names i was forgetting
these things like keeping up with the kids schedules and picking them up and it became
a real difficulty for the family because on the surface it looked like i didn't care
nobody really wants to be thinking they have dementia when they're in their 40s
firstly i saw a gp mostly they thought i had perimenopause and that went on for a while
then they thought maybe it was depression so we followed that for a couple of years it was really
frustrating um because everyone seemed to see me as a middle-aged disappointed woman who was
maybe frustrated with her life or depressed it was really difficult because i started to doubt my own
sanity ultimately i was able to find um a doctor who was associated with my workplace who knew me
before these symptoms had started so we were able to actually have something on paper that showed
the deterioration in my function and that was ultimately what was key to having a diagnosis
i suppose the first thing you lose is i guess your self-esteem because these days we
wrap up our self-esteem with our work how well we live what we drive
you hand over your decision-making you hand over pretty much your autonomy then you have
helpful people who want to come in and sweep and do things for you so you actually end up over
a period of time with no responsibilities with nothing to do and so that makes you think well
who am i why am i even here if i don't even have to put the trash out
what i guess you've got to realize from the outside is that all of this is internal it's
internal pain you're just so vulnerable that it makes you i guess want to be a
hermit and stay somewhere safe so when you see a person with dementia who's sitting
you assume it's empty that there's nothing going on you know but there is there's a lot going on
you're tired your brain is scrambled and sometimes it's kinder to let a person just sit and be kind
your brain is a bit broken and there's a disconnect between what you feel
and what you express it can come out as anger frustration short temper i might throw something
but i'm not angry with people i'm angry with me
it's actually repulsive to live with your brain not functioning properly definitely in terms of
feeling and emotion there's a lot of grief and they're almost exclusively negative emotions
probably the most common would be self-disgust in my mind i see it as a bit like swiss cheese
you know with all the little holes and things and i suppose the philosophy i have to keep going is
i try and live between the holes and try and make new little pathways by doing different
and unusual things i know we can build brain but i know that on the other side it's being eaten
physical pain is probably the most logical reason that someone's upset and angry or they're unwell
otherwise unwell i had fallen off the horse and um i was in a lot of pain you know a back back injury
and i was laying on the in the emergency room on the bed and i had asked for some pain relief
it was really difficult for me to stay okay inside my head so i'm laying there waiting for the pain
medication when suddenly the bed moved and i wasn't lying down anymore i was pushed up to
a seated position which was really painful but i didn't have the ability anymore to breathe it out
and calmly say to someone would you mind not you know politely saying please don't move the bed
without letting me know um so i screamed shouted and ah it was an expression of
pain the nurse who had come up behind me and shifted the bed to the seated position
went to the end of the bed to all of the students who were there and described me as someone um
with the behaviors of dementia who were aggressive and that this was a thing and it was nothing to be
afraid of but it was normal for people with dementia to be aggressive and to
shout a lot and myself and my daughter who was 16 at the time were just like what
and um that was a it was a big learning thing for me but it was also a really disappointing
demoralizing time to be feeling so low physically and to be i guess named and shamed and used as an
example of something that i thought was so so detrimental to someone's humanity really
i think with the best intention in the world the emergency room doctor
thought it might be a good idea to give me something that would make me more
calm so along with the pain medication was some kind of calming thing
but no one told me because i had
dementia
if someone is behaving or expressing something that's not to your social expectations or to
your taste medication is probably the most cruel thing that you can do to that person
it makes you feel more frightened because if your mind is scrambled and it feels like
there's a flock of seagulls going around your head and all of a sudden someone is saying well
here let's pop some more seagulls on let's make you more confused like how who is this
helping it's it's not helping us you could be kind and compassionate and try to think
what might that pain be that that person is expressing is it physical is it emotional
how can we help them to maybe come to some peace with themselves let's look at some other ways
i guess to try and stay well and with this theory of trying to live between the holes and i guess
finding new ways to do all things i'm still deteriorating but not at the rate
that would have been expected living with dementia is like um it's like going to your sock drawer
and you open it and there's no socks it's empty that's sort of confusion puzzlement like what
there's empty space in here you've got nothing you're just like and it's quite confronting
the best thing you can really be around me is patient because i have no control over this
i guess my main message is we are all humans inside of here
what you see on the outside doesn't in fact rarely reflects what's going on in the inside
almost always you'll find if there's a
ridiculous amount of hostility or angry or aggression behavior it's something going on
within that person themselves and if you're a medical profession that's kind of your job
to help us figure it out from the clues we can only give clues we can't talk forever
sometimes we can't talk at all just please be patient and look for clues
you