Liz Cunningham Story of a Lifetime


Liz Cunningham

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Where are you going to?

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Imagine your life's ticking along just the way you always hoped.

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You're in your family home with a husband you love

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and you're doing all the normal every day things

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that most of us take for granted.

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Now imagine if one day this was all pulled from under you.

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She kept describing like this really bad pain in her head

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and she just couldn't deal with what was going on in her head.

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Your closest family become strangers...

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There are some days like she has looked at me

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and I know she hasn't recognised me.

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..and with no idea why this is happening

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you turn to desperate measures.

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It was a concoction I knew would put me asleep...

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..and I hoped forever.

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At the age of 47, this is what happened to Liz Cunningham.

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When they told me I had Alzheimer's, I thought, "Thank God."

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This is Liz's story.

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-Do you want a wee cup of tea, love?

-Thank you very much.

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Liz Cunningham has been married to husband Philip for 36 years,

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but Philip is also her full-time carer

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as, since the age of 47,

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Liz has been living with a rare form of dementia.

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It is a degenerative condition which physically destroys the brain

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and for which there is no cure.

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Liz had been working for over 20 years in her job as an IT teacher

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when she began to notice some unsettling changes.

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In work, all the signs were there to me.

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I couldn't write reports.

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On the computer, letters were jumping all over the place

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and I thought maybe I had dyslexia.

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That must have been upsetting for you - you were losing control.

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I was.

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Coming out of even the toilet I couldn't get back to my room,

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I didn't know where I was,

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and I can't even remember who was passing by,

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all I know is that I asked them,

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"Could you take me back to my office?"

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And they thought I was joking, they really did.

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Seeing at first hand, as her child,

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and knowing what my mum has been through, it's very sad

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cos I have seen her in her good times and the bad times.

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My mum has got a very sunny disposition

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and she's such a happy person and always out

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to look after everyone else, and she became almost like a recluse.

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Tears in her eyes, apologising,

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"I'm just sorry, I can't deal with this.

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"I can't do this right now."

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It's strange, you know, because that just wasn't my mum.

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The mum that I know, you know.

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There was a dark side in the beginning, when it was all

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threw upon us what the illness was.

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In the beginning, we didn't know what it was.

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We were thinking everything.

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I rang my husband one day and I said, "Philip, please come for me,

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"I have to go home."

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I crawled into the back of the car...

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..and I lay down and I just couldn't stop crying.

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And it became a year of tears, really.

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Liz visited her GP a number of times,

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but she still didn't know what was wrong with her.

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She did know there was something fundamentally not right.

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I became so distressed

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that I wrecked the house.

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-I wasn't trying to...

-What were you doing to the house?

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Well, I pulled my wall units down.

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-In anger?

-Yeah, frustration.

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-Pulled it down?

-I just felt nobody was listening,

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nobody was helping, and I was at a stage I just couldn't cope anymore.

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I went up the stairs then and I stayed there for near a year.

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-You stayed upstairs?

-I stayed upstairs on my own.

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I stopped talking.

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I just...

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you know, signalled answers just with a shake of the head.

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So that was a very significant day in your life.

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You go upstairs and you essentially withdraw from the world.

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Nobody was coming to my...

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Nobody was coming to help.

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I honestly thought I was...

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Well, I was there to take my life.

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-What do you mean?

-Well, I was going to take tablets.

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I had tablets.

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My daughter now kept coming up,

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but I wasn't thinking about them.

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She kept describing this really bad pain in her head

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and she just couldn't deal with what was going on in her head,

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and again asking me for water, you know,

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to make sure that she was OK.

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She didn't know I was taking the tablets.

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None of them knew.

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It was a concoction I knew would put me to sleep

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and I hoped forever.

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That's a big thing to say.

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-I think...

-If you don't mind me saying so...

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I guess the harshest thing I will say to you today,

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you were involving your daughter in that process.

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Yes. And that hurts.

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I broke my heart over that.

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I really have cried so many times to know that I involved her in that.

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-Were you angry with her?

-I wasn't angry.

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I sympathise with my mum completely.

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You know, I couldn't put myself in her position to know exactly

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what is going on in her head and what she is feeling

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and I don't condone it in any way,

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but I do totally sympathise with her, you know,

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and I try to understand what she was feeling at that time.

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It had been a year of profound anguish for Liz,

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but she was eventually sent for the brain scans which would lead

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to her diagnosis and, to some degree, give her comfort.

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It was three parts of my brain that was deteriorated.

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The brain was shrivelling up

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and I was told I had posterior cortical atrophy.

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It's very young.

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Is that what was in your head?

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No, I never thought in my lifetime that it would be a form of dementia.

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-Never.

-That in your 40s.

-Ever.

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What does it do you, though, when you're told in your 40s

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you've got dementia?

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For me, it was relief at the start.

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-A relief?

-I really thought I was going nuts,

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I really did.

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I can't...

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..explain how that felt,

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so when they told me that I had Alzheimer's, I thought,

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"Thank God."

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When I heard Liz say she was happy to be diagnosed,

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I was surprised, but then it made sense,

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as I guess it meant she could finally start living again -

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in Hemsworth Court, a dementia-friendly housing complex

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off the Shankill Road.

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It was a godsend for me, it really genuinely was,

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because I wouldn't even go out my front door

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because I was terrified. I didn't know the place.

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I couldn't remember anything about the place

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and I was becoming more distressed as the days were going on,

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so it just happened at the right time.

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So you'll be here for the rest of your life, Liz?

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I will and so will Philip.

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I mean, he's not going to be chucked out very easily

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after I disappear, you know!

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'Philip and Liz want to do everything possible to maintain

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'Liz's independence around the home.'

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I would do my wash step-by-step,

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so step one would be to get the clothes...

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'But seeing what's involved for Liz

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'to complete the most basic day-to-day tasks...'

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Step two, get the washing powder.

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'..has shown me the level of impact her dementia has.'

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I have the little orange sticky buttons to remind me

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to push the button and that would be my last one, number four, again.

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So...

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And that's my wash on.

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Liz has good days, bad days, you know, but on a bad day,

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the way I describe is, it's like this wee alien ship

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just comes along and takes the heart and soul and leaves the shell.

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We went to our daughter's house, Nicola,

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we'd just came back from holiday and went to the door

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to give a few presents, and she wouldn't go in the door.

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She thought Nicola was a stranger.

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I hadn't seen her in a while and she'd changed her hair...

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..and I asked my husband who that was.

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And, once again, I broke my heart.

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I couldn't get over, when...

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When he said to you,

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-"Liz, that's your daughter."

-Yes. "That's Nicola."

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Do you know, I just thought, how could I forget what my daughter

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looks like? How could I not even sense?

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You know, because all along I always thought that,

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no matter what I lose, you still have it in here, your heart.

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But I didn't.

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I couldn't,

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I mean, it has happened a few times with Nicola.

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That must be one of the most devastating aspects...

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-Yes.

-..of your illness.

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Very much so.

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My husband says sometimes I look at him like that.

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As if...

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..because he's older now...

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Do you ever wake up in the mornings and wonder who it is beside you?

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Yeah, I do.

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Sometimes...

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I always feel back that I'm in my 30s again.

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And sometimes, when I look at Philip, I do,

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just maybe for a few minutes, think...

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"Who are you?"

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And he knows. He sees it, you know,

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and he is well aware that it happens.

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Right.

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'Whilst there's no cure for dementia,

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'Liz has a vast array of medication to take each day to help her keep

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'the symptoms at bay and potentially slow the progression down.'

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It's Sunday today...

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..so it is.

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Suck it up.

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What have I not taken?

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Because you're on an antibiotic, darling.

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-That one interferes with the antibiotic.

-Right.

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'But what I was surprised to learn next

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'was that dementia doesn't just affect the mind.

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'The brain controls our bodily functions

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'and so, as the brain deteriorates,

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'the body's ability to function deteriorates.'

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I am very prone to infections -

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chest infections, kidney, urine infections.

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My bowels have stopped working.

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My kidneys...

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This shuts down, this down, this doesn't affect... Of course,

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if it's affecting your brain then your brain controls everything.

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Yeah. It was the same as my sight and my senses.

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Your sight?

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What does it do to your sight?

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There is times my sight completely goes.

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In both eyes?

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And that terrified me at the start.

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Despite the physical and mental barriers she faces,

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Liz carries on with her day-to-day life.

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Susan Holmes is a volunteer with Age NI.

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They provide Liz with a weekly chaperone service

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and that lets Liz do her weekly shopping.

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I have just really appreciated being able to go shopping

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because I don't know, but...

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..what it is like to go with a man! Shopping!

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The arguments we end up, you know.

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'Just because I have a disease doesn't mean I can't do things.

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'I might need to change a bit...'

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They're mandarins.

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'..but I can still do the things.

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'Because my sight comes and goes, I would wear

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'the black glasses for partially sighted.

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'When I use them, am I sick? People will help me...

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'..but they won't if I say I've got dementia,

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'and that's quite scary for me.'

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-Is there anything down for Teddy?

-No, there's nothing down.

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Well, he must have everything. He must...

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Wait till I tell you, Philip gets him every treat under the sun.

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He's spoilt rotten.

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'I want to be able to do my own shopping

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'and be independent as long as I can.

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'I'm not ready to lie down and give up.'

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Now to pay for them.

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This is always the stage I panic at you, you know...

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Do you want me to lift the bag up?

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-And you can see better, maybe.

-..sitting in a queue.

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What the hell did I do with it?

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It's all right. Take your time.

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There.

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The PIN entered.

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-Thank you very much now.

-Bye.

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Shopping's not the only thing on Liz's to-do list.

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She finds it important to share her dementia story with others.

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OK, thank you for being here.

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She gives regular talks to the medical profession

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through Dementia NI.

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When I go to my GP, you know, he'll continuously say to me,

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"Liz, your memory is so good."

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But, you know, inside what I feel he's actually not saying is that,

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"Are you sure you've really got dementia?"

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You get things like,

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"Oh, I lose my keys as well, or forget where I left my car."

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That hurts. You know, that sort of puts a distrust,

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but things that youse don't see today,

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me stumbling or loss of my balance,

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the occasional total disorientation, I don't know where I am or why.

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These are the hidden bits.

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So when somebody comes in to a clinic,

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you mightn't be aware of that,

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you know, we are dying of this disease.

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So making them feel comfortable...

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..with yourselves is the most important aspect.

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I'm so proud of her. That's the mum that I remember, you know.

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I wouldn't be the person I am today without my mum.

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She is such a strong woman.

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She's kind.

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She wants to help others and that hasn't changed,

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that's who my mum has always been.

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And, in fact,

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in a weird way, possibly,

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the Alzheimer's has been a blessing in that sense because

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she has been able to reach out to so many people

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and use the skills that she has to not only help herself,

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but to help others.

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My mum is a fighter.

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She still has a lot of life in her to give,

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so it's not all doom and gloom.

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I'm hesitating cos there's a horrible question in my head.

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Mm-hmm.

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I'm so close to my mum.

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I know.

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So I'll say it out loud,

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would you prefer your mum to die soon

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and, therefore, she is the person who still knows who you are

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and she's still your mum as you know her?

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Or would you prefer her to live through the disease

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to the point where she doesn't know who you are?

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-Personally...

-I'm even sorry for asking that.

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No, it is OK. Um...

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Personally, all I want for my mum is that she doesn't feel any pain,

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but, at the same time, my mum is my mum

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and it is going to be difficult seeing her go through

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the change that she will go through,

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but I am happy to do that because I know deep down

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she's still my mum and I'll support her no matter what.

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I'm well aware that I'm going to die...

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..so is the family.

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I've no misconceptions about it.

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The only thing that I was scared of was maybe if say, for instance,

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I had an infection later on,

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maybe if I was in pain, nobody could see that pain...

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..because it's invisible.

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Because what dementia will do is it will affect the brain

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to the point where you can't talk.

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Yeah.

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-You can't swallow.

-Yeah.

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I guess the swallowing probably is...

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..would be...

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..one of the most important stages...

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..because, if you can't swallow,

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you're then going to be put onto...

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..a drip with food or whatever, fed in that way.

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What is the prognosis for you?

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The disease is progressive.

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Yeah. They said initially five to ten years.

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-Of life?

-Yeah.

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I'm seven years down the line and I don't...feel...

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I...will die in another three years' time.

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Liz's symptoms first presented themselves

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when they were living in the family home

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in Mountcollyer Road in north Belfast.

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Today, many years later, she is coming back for the first time.

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This is where she brought up her children, but would she remember?

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-How are you?

-Hello!

-You all right?

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-Hi.

-Can you remember them?

-Do you not remember?

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Do you not remember? They were our neighbours.

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INDISTINCT SPEECH

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-Do you remember those people?

-Do you remember them?

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-Do you recognise them?

-No.

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-Aye. I remember the one...

-With the glasses?

-Aye.

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-They moved in this street at the same time as us.

-Did they?

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-How long did you live down here together?

-About 15 or 16 years.

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So, Liz, would you be able to take us to your house?

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Go on, you try.

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No? It's OK. That's OK.

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'The look on Liz's face says it all.

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'She has very little recollection of the many years

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'the family spent living in this street...

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'..but she is hopeful that some past memories will come back.'

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-Who is that?

-That's the neighbours.

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God save us.

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I get so embarrassed.

0:20:530:20:55

-Why?

-Because I don't know people.

0:20:550:20:57

That's OK. It is not your fault.

0:20:570:21:00

-That's Tommy and Winnie's.

-That's Tommy and Winnie's.

0:21:070:21:10

We must be over there then.

0:21:120:21:14

That was your family home for 16 years, Liz.

0:21:140:21:17

-Sorry.

-It's OK.

0:21:170:21:19

That's the house I thought we'd never move away from.

0:21:210:21:24

I remember the first year we moved in here, it snowed.

0:21:270:21:30

-Oh, gosh.

-So it did, in 1995, it snowed and the snow was thick

0:21:320:21:35

and we made snow men out here.

0:21:350:21:37

-We made snowmen in the back garden for the kids.

-Oh, my goodness.

0:21:370:21:40

That was Nicola's room.

0:21:410:21:43

Was that Nicola's room?

0:21:430:21:44

-And the one over the other side...

-Was that ours?

0:21:460:21:49

No, that was Lisa's room.

0:21:490:21:51

Our room was at the back.

0:21:510:21:53

-Was it?

-It was a big room too, like.

0:21:530:21:54

Was it?

0:21:540:21:56

I'm looking at it and I mightn't remember very much,

0:21:580:22:02

but I do remember the being scared.

0:22:020:22:05

Yeah, you were scared in this house, yeah.

0:22:050:22:07

When you got diagnosed, you were scared.

0:22:070:22:09

Did it all happen in this house?

0:22:090:22:12

Well, we're not up at Hemsworth seven years,

0:22:120:22:15

we're only up there four.

0:22:150:22:17

Right, so most of it would have happened down here.

0:22:170:22:20

I can't...

0:22:220:22:24

I know you're not telling me lies, Philip.

0:22:240:22:27

I just feel very, very, very frightened, so I do.

0:22:270:22:32

There was frustration expressed in the house, Philip, is that fair?

0:22:340:22:38

Yes, there was. There was frustration.

0:22:380:22:40

Liz didn't know what was going on and just in the house...

0:22:400:22:44

One day she just pulled all the wardrobes down

0:22:440:22:48

and our units down in the living room,

0:22:480:22:50

which was hard for me cos I didn't know what was going on.

0:22:500:22:54

And what do you call it...?

0:22:540:22:57

Sorry. I get upset because the memories are there,

0:22:580:23:01

them units are the units that she wanted in the house

0:23:010:23:04

and she wrecked them,

0:23:040:23:06

and that was just part of the illness.

0:23:060:23:09

Can you remember doing that, Liz?

0:23:100:23:12

It's just part of the illness.

0:23:120:23:13

I can remember doing them, but not being here, if you know what I mean?

0:23:130:23:18

I know.

0:23:180:23:19

-Sorry.

-It's OK.

0:23:210:23:23

It's not your fault.

0:23:230:23:24

Why are you saying sorry?

0:23:250:23:27

Because I hate to see him get upset.

0:23:270:23:30

That's one of the hardest things for me.

0:23:300:23:33

Look at this. Look at this. Look at what you have.

0:23:330:23:36

I know, but do you know what?

0:23:360:23:38

You know, talk about being strong...

0:23:390:23:42

..to see hurt in my husband's eyes near breaks my heart

0:23:430:23:47

-and even about here...

-It was a happy home.

0:23:470:23:49

-I couldn't do without him...

-I couldn't do without you. I love you.

0:23:490:23:53

-..and that's the truth of it.

-I love you.

0:23:530:23:55

And I said to her I'd follow you to the moon and back.

0:23:550:23:58

-That's right.

-Are you OK?

0:23:580:24:00

I'm OK. Are you?

0:24:000:24:02

It's a love story, this, as much as a film about dementia.

0:24:030:24:07

She's still happy. You can't see her face,

0:24:070:24:09

but I can hear her laughing and that was her family home

0:24:090:24:12

where she brought up her children,

0:24:120:24:14

and then the disease took a grip of her, and she was literally

0:24:140:24:17

pulling cupboards off walls, and what did her husband do?

0:24:170:24:21

Stood beside her,

0:24:210:24:23

grabbed onto her and they went to a new home.

0:24:230:24:26

Listen, it was lovely seeing you.

0:24:260:24:28

'It is amazing to see the love that they have between each other.

0:24:310:24:35

'That they would do anything'

0:24:350:24:37

to stick by one another, no matter what, and it really does show,

0:24:370:24:40

especially now, when my mum is going through what she's going through.

0:24:400:24:44

He does everything for me.

0:24:450:24:48

He's there when I make the mistakes...

0:24:480:24:50

..he's there when I'm depressed,

0:24:520:24:55

and I couldn't do it without him.

0:24:550:24:57

When I get confused and I can't shower properly,

0:24:590:25:02

when I'm maybe washing my hair with soap or getting all mixed-up,

0:25:020:25:07

he's always there to help me.

0:25:070:25:10

One time she'd think somebody is in the room, she was really scared,

0:25:110:25:16

so I had to get up and go into every room

0:25:160:25:19

and try and calm her down, to say, "No, there is nobody here."

0:25:190:25:23

I couldn't live without him,

0:25:240:25:26

I really couldn't,

0:25:260:25:28

and I thank him so much...

0:25:280:25:30

..for being mine.

0:25:320:25:33

He's a really good man.

0:25:330:25:35

What a beautiful, powerful love story this is

0:25:370:25:40

between husband and wife.

0:25:400:25:42

And there's another love story -

0:25:440:25:46

Liz's daughter is getting married

0:25:460:25:48

and all the preparation at Liz's home in Hemsworth Court.

0:25:480:25:51

Obviously I'm your youngest daughter, so she's pretty emotional

0:25:510:25:54

and my oldest sister got married this year, too.

0:25:540:25:56

We're all very excited.

0:25:560:25:58

Oh, looking forward to Nicola's wedding, oh, yes,

0:25:580:26:01

and walking down the aisle with her and giving her away,

0:26:010:26:04

and Liz can't wait anyway. She bought four dresses.

0:26:040:26:07

I can't wait. I really can't wait

0:26:070:26:09

to see my youngest girl go down the aisle.

0:26:090:26:13

I sort of said to Philip, you know,

0:26:170:26:19

"Do they think I'm leaving soon?"

0:26:190:26:22

Because both of them set the dates,

0:26:220:26:24

for, you know, this year and I says,

0:26:240:26:27

"Philip, tell them I'm going nowhere."

0:26:270:26:29

What I have learnt from so many people that have the same as me,

0:26:390:26:44

I've seen people lie in bed for a couple of years...

0:26:440:26:47

..and maybe the grandchildren come to them,

0:26:490:26:53

and they still have a smile even though they're close to death.

0:26:530:26:58

I've said to Philip, you know,

0:27:010:27:04

I want my grandson lying beside me

0:27:040:27:07

because I'm hoping that I'll still feel it rather than know it.

0:27:070:27:13

"I'm hoping I will still feel it..."

0:27:130:27:15

-Yeah.

-"..because I won't know it."

0:27:150:27:18

Yeah.

0:27:180:27:19

And that's exactly it.

0:27:200:27:23

I have talked a lot about things that you can't do today

0:27:240:27:27

and won't be able to do...

0:27:270:27:29

..but you have something that many people who are physically well

0:27:320:27:38

don't have - you have beautiful children.

0:27:380:27:41

Isn't that incredible?

0:27:420:27:44

You have love in your life, a devoted husband.

0:27:450:27:48

Isn't that incredible?

0:27:480:27:50

I'm so proud of all my family and I think that's what makes me

0:27:500:27:55

keep on going and, do you know? At least when I go...

0:27:550:27:59

..they know how I have tried to change...

0:28:000:28:04

..the views of people about dementia...

0:28:060:28:09

..and maybe helped a few people along the way.

0:28:100:28:13

Lastly, just one line that I have, as a person.

0:28:140:28:18

I say it to everyone, you know.

0:28:180:28:21

I have dementia,

0:28:210:28:24

but I'm still me.

0:28:240:28:26

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