Program No:
1539
For Broadcast: 27th September 2015
FUZZY DAYS (early onset Dementia)
Interview with Ann and Timothy
Ann: I do have days where things are totally fuzzy, you know if your tea comes out in ten different pots and
one's burnt and one's not it's not a good day, don't ask
Announcer: I’m Richard Fox, welcome to Face to Face. Ann was diagnosed with early onset Dementia in
2012, at the age of 59. Stay with us as Celia Fielke talks with Ann, and her husband Timothy, about how
Dementia is affecting their lives.
Celia: Ann and Timothy, thanks for joining us today. Ann can you give us some background about
what you were doing when you first met Timothy?
Ann: I started out as a nurse and then I became an advisor to the public hospitals in Victoria. Then I moved
on to a position of a senior advisor in aged care which has always been an area that I've been interested in.
As far as my nursing friends were concerned I was never going to get married, I was going to be a career
nurse. And then I met Tim.
Tim: We met over a Sunday lunch on Mother's Day in 1981, I remember quite clearly, we both remember it
very clearly. I loved Ann's sense of humour, I loved her style, I was very attracted to her honesty about lots of
things. We had a lovely friendship develop. I think we sort of became romantically linked pretty quickly but
then we sort of cooled that and we just got to know each other.
Ann: We took ages to get married because he was so slow in asking!
Tim: Well yes I was a crusty old bachelor I suppose in some ways.
Celia: Ann, after marrying Timothy, you stopped working and became a full time mum to four
children. Then eventually you went back to work after they all left school. Tell us about going back to
work.
Ann: When they left school I worked in one of the local councils working in the home assist area which was
sort of helping people maintain their independence in their homes. Then I also got involved in younger-onset
dementia groups. An then I started to realise that things were getting really difficult. Things like, I was in a
meeting where we were discussing a paper and in my sort of I suppose paranoia I sort of looked at this and
said look I haven't ever seen this before. I'll need a copy of this because I didn't have one and they just all
kept talking about it. Anyway I got a copy and when to photocopy it and all over it were my notes. I had been
given it before to actually comment on before we discussed it. I didn't know whether I was really stressed or
whether I was losing the plot. I hadn't thought anything about memory issues or anything,
Tim: Anne noticed all these things and I hadn't noticed anything at all, so I suppose I was a little bit
disbelieving at first but Anne mentioned this doctor who got onto things very quickly and we'd have to say that
it's been a huge benefit that she diagnosed Ann very quickly then.
Ann: Which means you know you have more quality time and more time to get used to what it's going to
mean.
Celia: Were there other symptoms apart from the memory loss?
Ann: The memory issue is really just one. I mean there's the spacial things, like my balance is pretty bad and
I stumble from time to time. I’m very self conscious of that.
Tim: Executive functioning, there's behavioral changes, there are personality changes. There are physical
symptoms as well too. You might've noticed that Ann has a tremor and she also has some balance issues.
Basically little parts of the brain are dying.
Celia: So how does that affect your everyday living?
Ann: Little things slip like the ironing of a shirt for example. I can't seem to get the sleeves, the cuffs, the way
they used to be and I can’t do the embroidery I used to do, I used to do really detailed stuff. It’s also the
cleaning and things. Little things get more difficult and you need to be reminded without wanting to be
reminded.
Tim: You say that you need to have a method for washing the floor because you'll forget which areas you've
done.
Ann: Which sounds daft and I think, have I done that before or not? And I’ll guess I haven’t. And it applies to
other bits and pieces, have I done that or haven’t I done that?
Tim: Was the cat fed?
Ann: Well the cat will tell us.
Tim: The fact that the cat is getting fatter and fatter and fatter probably means it’s been fed five times!
We decided that we wouldn't cover the kitchen yet with posters of don't forget to turn off the gas.
Ann: Oh yes well I did have a little incident the other day where I forgot about…..
Tim: We had a tiny bit of a fire wasn't it, two tea towels caught on fire and you weren't going to tell me.
Ann: No, except for the singed tea towels in the laundry!
Tim: We’ll have to start having reminders at some stage.
Celia: So how do you not get obsessed about the things that you can’t do as well as you used to.
Ann: You forget them. I mean at the time you think oh but then you've forgotten it. I mean I do have days
where things are totally fuzzy. It’s like string and nothing seems to fall into place. I don't panic about it I just
sort of say this is it. This what you are. You can’t dwell on all the if’s and but’s and things you might have done
before and been worried about.
Celia: Timothy do you worry more now about what might be happening at home while you’re at work?
Tim: I've never been a great worrier but look the future is unknown and so I do wonder how this will all pan
out? What will the next steps be? Will we start to need assistance at home? When will I give up work to care
for Ann? How long will that continue for? What will the next steps be? Fortunately it's absolutely great to have
wonderful doctors whom you can rely upon to give you the advice about how to take the next steps or even
when the next steps need to be taken. So they do allay a lot of my fears but yes of course I worry about Ann.
I'm just hopeful that we have some more good years.
Celia: Ann we’ve talked about some of the things that you can’t do in the same way you used to. Have
you been able to adapt to those changes?
Ann: I used to do really detailed stuff and now I’ve just had to give up and do things that don’t require
counting and I can’t do the embroidery things I used to do. I have to read facts rather than crime and fiction
which I used to like. I can’t follow the plots on a television series anymore. There’s been an increase in the
trendiness, and not just the people with dementia, to do adult colouring. That's meant to be for, what's it
called? Well being?
Tim: Mindfullness, it has sort of a slightly meditative aspect to it as well, it can be used for that.
Ann: And now I just sit and colour in. There's no right or wrong which of course with my life was always, it had
to be right. Now I just use colours and things I would never have used before. Colours weren't my scene. I
could draw, I could do anything in detail but I didn't have colour. Now I can do things that are quite interesting I
think.
Tim: You're bolder.
Ann: Much bolder. You become much freer and much more….
Tim: Taking some braver steps in some areas.
Ann: I think you're truer to yourself when you have all the barriers broken down. So now I take risks with this
sort of thing. I do embroidery that doesn't work out and it doesn't matter. Knitting, I used to knit really intricate
patterns and now I find that I've cast on 55 stitches and it says 40 and I just constantly smile and undo it and
cast on again. It doesn't matter whereas before it did matter, it mattered a lot.
Tim: You've been a perfectionist and that's been a hard lesson in a way.
Ann: I've lost that need to do the perfect things but I still like that creative part of me, that's still there.
It just means that you have adapt. I think that's the main thing you just have to cut back and adapt what you
do.
Celia: Timothy have there been changes you’ve had to make?
Tim: Yes there certainly are. I mean there's been some physical things that I do more, for instance I do all the
paperwork, all our business work where Ann used to do that before. I’m far from being perfect at this but I do
have to try and pick myself up from commenting about certain things which I think don't really matter.
Standards in certain areas, that sounds as though you've dropped your standards or something but you
haven't.
Ann: But I know what you mean, I'm not as conscious of things as I might have been before.
Tim: But look we talk about lots of stuff. We always have. I guess I'm not the typical male who tends to be
fairly reserved and retreats to my cave, I'm not like that.
Celia: How about you Ann, has your relationship with Timothy changed in any way?
Ann: It has in that I've had to bite my tongue a bit and be a bit more humble and a bit more accepting that
perhaps I'm not always as right as I used to think I was.
Tim: Ann has a strong personality and she's had to become more dependent, and that's a humbling
experience for Ann. She likes to be fiercely independent.
Ann: And I think that's part of the humbling too, you know, it proves that you're not in control of everything and
that you can't rely on yourself all the time.
Tim: We're very trusting in God and his promises.
Ann: That God's there and that this is given to us for a purpose, even if it's just to help other people.
Tim: And I suppose this has led into the whole journey that we've been on representing Alzheimers Australia.
And from there you've developed a bit of a package talk which Ann has given in various forums.
Ann: I'm not happy having dementia. I accept it.
Tim: You wouldn't have it by choice of course.
Ann: No
Celia: Timothy and Ann, we started today’s interview with how you first met. How do you see your
relationship now, in light of Dementia?
Ann: I think we're really good friends. We have so much in common, we have our faith, we have our friends,
we have our family.
Tim: We have lots of fun, all the F words.
Ann: Well not all of them! (laughter)
Tim: We have lots of fun together but also we have a shared life and a shared life and shared memories
means a great deal.
Ann: Much greater isn't it than we first met.
Tim: Oh a deeper, deeper love.
Ann: It's almost a oneness isn't it
Tim: Yes it's a oneness.
Ann: I feel blessed.
Tim: And this dementia thing is really a journey that we both are on. It's not just Ann, it is me as well too. I feel
that.
Ann: I feel sensitive about that.
Tim: But you don't need to feel sensitive about it because that is a calling to me to be there with you on that
particular journey.