Liz Cunningham Story of a Lifetime

Where are you going to?

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

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

and you're doing all the normal every day things

that most of us take for granted.

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

She kept describing like this really bad pain in her head

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

Your closest family become strangers...

There are some days like she has looked at me

and I know she hasn't recognised me.

..and with no idea why this is happening

you turn to desperate measures.

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

..and I hoped forever.

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

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

This is Liz's story.

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

-Thank you very much.

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

but Philip is also her full-time carer

as, since the age of 47,

Liz has been living with a rare form of dementia.

It is a degenerative condition which physically destroys the brain

and for which there is no cure.

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

when she began to notice some unsettling changes.

In work, all the signs were there to me.

I couldn't write reports.

On the computer, letters were jumping all over the place

and I thought maybe I had dyslexia.

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

I was.

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

I didn't know where I was,

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

all I know is that I asked them,

"Could you take me back to my office?"

And they thought I was joking, they really did.

Seeing at first hand, as her child,

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

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

My mum has got a very sunny disposition

and she's such a happy person and always out

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

Tears in her eyes, apologising,

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

"I can't do this right now."

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

The mum that I know, you know.

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

threw upon us what the illness was.

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

We were thinking everything.

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

"I have to go home."

I crawled into the back of the car...

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

And it became a year of tears, really.

Liz visited her GP a number of times,

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

She did know there was something fundamentally not right.

I became so distressed

that I wrecked the house.

-I wasn't trying to...

-What were you doing to the house?

Well, I pulled my wall units down.

-In anger?

-Yeah, frustration.

-Pulled it down?

-I just felt nobody was listening,

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

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

-You stayed upstairs?

-I stayed upstairs on my own.

I stopped talking.

I just...

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

So that was a very significant day in your life.

You go upstairs and you essentially withdraw from the world.

Nobody was coming to my...

Nobody was coming to help.

I honestly thought I was...

Well, I was there to take my life.

-What do you mean?

-Well, I was going to take tablets.

I had tablets.

My daughter now kept coming up,

but I wasn't thinking about them.

She kept describing this really bad pain in her head

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

and again asking me for water, you know,

to make sure that she was OK.

She didn't know I was taking the tablets.

None of them knew.

It was a concoction I knew would put me to sleep

and I hoped forever.

That's a big thing to say.

-I think...

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

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

you were involving your daughter in that process.

Yes. And that hurts.

I broke my heart over that.

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

-Were you angry with her?

-I wasn't angry.

I sympathise with my mum completely.

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

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

and I don't condone it in any way,

but I do totally sympathise with her, you know,

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

It had been a year of profound anguish for Liz,

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

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

It was three parts of my brain that was deteriorated.

The brain was shrivelling up

and I was told I had posterior cortical atrophy.

It's very young.

Is that what was in your head?

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

-Never.

-That in your 40s.

-Ever.

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

you've got dementia?

For me, it was relief at the start.

-A relief?

-I really thought I was going nuts,

I really did.

I can't...

..explain how that felt,

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

"Thank God."

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

I was surprised, but then it made sense,

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

in Hemsworth Court, a dementia-friendly housing complex

off the Shankill Road.

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

because I wouldn't even go out my front door

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

I couldn't remember anything about the place

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

so it just happened at the right time.

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

I will and so will Philip.

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

after I disappear, you know!

'Philip and Liz want to do everything possible to maintain

'Liz's independence around the home.'

I would do my wash step-by-step,

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

'But seeing what's involved for Liz

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

Step two, get the washing powder.

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

I have the little orange sticky buttons to remind me

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

So...

And that's my wash on.

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

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

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

We went to our daughter's house, Nicola,

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

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

She thought Nicola was a stranger.

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

..and I asked my husband who that was.

And, once again, I broke my heart.

I couldn't get over, when...

When he said to you,

-"Liz, that's your daughter."

-Yes. "That's Nicola."

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

looks like? How could I not even sense?

You know, because all along I always thought that,

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

But I didn't.

I couldn't,

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

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

-Yes.

-..of your illness.

Very much so.

My husband says sometimes I look at him like that.

As if...

..because he's older now...

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

Yeah, I do.

Sometimes...

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

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

just maybe for a few minutes, think...

"Who are you?"

And he knows. He sees it, you know,

and he is well aware that it happens.

Right.

'Whilst there's no cure for dementia,

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

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

It's Sunday today...

..so it is.

Suck it up.

What have I not taken?

Because you're on an antibiotic, darling.

-That one interferes with the antibiotic.

-Right.

'But what I was surprised to learn next

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

'The brain controls our bodily functions

'and so, as the brain deteriorates,

'the body's ability to function deteriorates.'

I am very prone to infections -

chest infections, kidney, urine infections.

My bowels have stopped working.

My kidneys...

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

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

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

Your sight?

What does it do to your sight?

There is times my sight completely goes.

In both eyes?

And that terrified me at the start.

Despite the physical and mental barriers she faces,

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

Susan Holmes is a volunteer with Age NI.

They provide Liz with a weekly chaperone service

and that lets Liz do her weekly shopping.

I have just really appreciated being able to go shopping

because I don't know, but...

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

The arguments we end up, you know.

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

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

They're mandarins.

'..but I can still do the things.

'Because my sight comes and goes, I would wear

'the black glasses for partially sighted.

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

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

'and that's quite scary for me.'

-Is there anything down for Teddy?

-No, there's nothing down.

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

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

He's spoilt rotten.

'I want to be able to do my own shopping

'and be independent as long as I can.

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

Now to pay for them.

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

Do you want me to lift the bag up?

-And you can see better, maybe.

-..sitting in a queue.

What the hell did I do with it?

It's all right. Take your time.

There.

The PIN entered.

-Thank you very much now.

-Bye.

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

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

OK, thank you for being here.

She gives regular talks to the medical profession

through Dementia NI.

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

"Liz, your memory is so good."

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

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

You get things like,

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

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

but things that youse don't see today,

me stumbling or loss of my balance,

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

These are the hidden bits.

So when somebody comes in to a clinic,

you mightn't be aware of that,

you know, we are dying of this disease.

So making them feel comfortable...

..with yourselves is the most important aspect.

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

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

She is such a strong woman.

She's kind.

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

that's who my mum has always been.

And, in fact,

in a weird way, possibly,

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

she has been able to reach out to so many people

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

but to help others.

My mum is a fighter.

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

so it's not all doom and gloom.

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

Mm-hmm.

I'm so close to my mum.

I know.

So I'll say it out loud,

would you prefer your mum to die soon

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

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

Or would you prefer her to live through the disease

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

-Personally...

-I'm even sorry for asking that.

No, it is OK. Um...

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

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

and it is going to be difficult seeing her go through

the change that she will go through,

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

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

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

..so is the family.

I've no misconceptions about it.

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

I had an infection later on,

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

..because it's invisible.

Because what dementia will do is it will affect the brain

to the point where you can't talk.

Yeah.

-You can't swallow.

-Yeah.

I guess the swallowing probably is...

..would be...

..one of the most important stages...

..because, if you can't swallow,

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

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

What is the prognosis for you?

The disease is progressive.

Yeah. They said initially five to ten years.

-Of life?

-Yeah.

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

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

Liz's symptoms first presented themselves

when they were living in the family home

in Mountcollyer Road in north Belfast.

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

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

-How are you?

-Hello!

-You all right?

-Hi.

-Can you remember them?

-Do you not remember?

Do you not remember? They were our neighbours.

INDISTINCT SPEECH

-Do you remember those people?

-Do you remember them?

-Do you recognise them?

-No.

-Aye. I remember the one...

-With the glasses?

-Aye.

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

-Did they?

-How long did you live down here together?

-About 15 or 16 years.

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

Go on, you try.

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

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

'She has very little recollection of the many years

'the family spent living in this street...

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

-Who is that?

-That's the neighbours.

God save us.

I get so embarrassed.

-Why?

-Because I don't know people.

That's OK. It is not your fault.

-That's Tommy and Winnie's.

-That's Tommy and Winnie's.

We must be over there then.

That was your family home for 16 years, Liz.

-Sorry.

-It's OK.

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

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

-Oh, gosh.

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

and we made snow men out here.

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

-Oh, my goodness.

That was Nicola's room.

Was that Nicola's room?

-And the one over the other side...

-Was that ours?

No, that was Lisa's room.

Our room was at the back.

-Was it?

-It was a big room too, like.

Was it?

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

but I do remember the being scared.

Yeah, you were scared in this house, yeah.

When you got diagnosed, you were scared.

Did it all happen in this house?

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

we're only up there four.

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

I can't...

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

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

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

Yes, there was. There was frustration.

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

One day she just pulled all the wardrobes down

and our units down in the living room,

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

And what do you call it...?

Sorry. I get upset because the memories are there,

them units are the units that she wanted in the house

and she wrecked them,

and that was just part of the illness.

Can you remember doing that, Liz?

It's just part of the illness.

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

I know.

-Sorry.

-It's OK.

It's not your fault.

Why are you saying sorry?

Because I hate to see him get upset.

That's one of the hardest things for me.

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

I know, but do you know what?

You know, talk about being strong...

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

-and even about here...

-It was a happy home.

-I couldn't do without him...

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

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

-I love you.

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

-That's right.

-Are you OK?

I'm OK. Are you?

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

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

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

where she brought up her children,

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

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

Stood beside her,

grabbed onto her and they went to a new home.

Listen, it was lovely seeing you.

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

'That they would do anything'

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

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

He does everything for me.

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

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

and I couldn't do it without him.

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

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

he's always there to help me.

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

so I had to get up and go into every room

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

I couldn't live without him,

I really couldn't,

and I thank him so much...

..for being mine.

He's a really good man.

What a beautiful, powerful love story this is

between husband and wife.

And there's another love story -

Liz's daughter is getting married

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

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

and my oldest sister got married this year, too.

We're all very excited.

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

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

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

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

to see my youngest girl go down the aisle.

I sort of said to Philip, you know,

"Do they think I'm leaving soon?"

Because both of them set the dates,

for, you know, this year and I says,

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

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

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

..and maybe the grandchildren come to them,

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

I've said to Philip, you know,

I want my grandson lying beside me

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

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

-Yeah.

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

Yeah.

And that's exactly it.

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

and won't be able to do...

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

don't have - you have beautiful children.

Isn't that incredible?

You have love in your life, a devoted husband.

Isn't that incredible?

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

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

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

..the views of people about dementia...

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

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

I say it to everyone, you know.

I have dementia,

but I'm still me.