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00:15This is a simply beautiful story that absolutely destroyed me the first time I watched it.
00:22For 35 years, Deirdre Croft and her intellectually disabled son Richard
00:27have had their journey documented on film, creating a record of a beautiful and loving relationship.
00:36Richard is now 45 and as Deirdre's health declines, she confronts a dilemma that many others face too.
00:44Who will look after our children when we're gone if they can't look after themselves?
00:50If we do a selfie, Richard...
00:54My son Richard is totally dependent on other people to help him engage with this world and to make sure
01:07he survives.
01:13Sometimes I actually feel that Richard is my therapist.
01:19He knows nothing about world politics.
01:23He has no ego.
01:25He doesn't judge me.
01:28It's quite liberating.
01:30It's hold my hand and let's play a song together.
01:35Happy birthday to you.
01:41Deirdre loves, loves and loved Richard from the minute he was born.
01:49She has given him her all.
01:52Yeah, everything.
01:54Richard.
01:57I think Deirdre is much frailer than she was.
02:01I want to thank you for all you've contributed in 45 years on planet Earth.
02:08I think she's been preparing for her death from day one with Richard.
02:14And so the pressure is now on Deirdre to work out who's going to look after Richard from this point
02:21on.
02:24My only concern is Richard's future.
02:29I feel like there's no time to be wasted.
02:35I feel like there's no evidence.
02:49Deirdre, I've found these photos in my storage.
02:53Oh, gosh, gosh, gosh.
02:56So you must have prepared these for the first film, I think.
03:00Yeah.
03:03Pregnancy, hospital, post-birth.
03:06Mmm.
03:09We got any tissues?
03:22I met Deirdre in 1989 and it was the beginning of a documentary journey
03:28that spanned nearly three decades as we made three films about her life with Richard.
03:33You rolling?
03:35Yeah.
03:36OK, Deirdre.
03:37What I'd like to talk about in this interview are the positive aspects of being Richard's mother,
03:43of being mother of a kid with special needs.
03:51Are you still going?
03:53Yeah.
03:55Um...
03:56The experience of Richard has given me an opportunity to appreciate the individuality of our children
04:08and their value in their own right, irrespective of whether you can puff out your chest
04:14and boast about winning a race or topping the class.
04:18That was so wise.
04:21And you still are.
04:23I thought Deirdre had a remarkable story to tell.
04:26But more importantly, I thought she would tell it with great candour and honesty.
04:32I thought she'd be brave enough to go on the journey and that's proven to be correct.
04:40I finished school in 1970 and I went to the University of Western Australia.
04:49I had a degree in psychology and I embarked on a career in journalism.
05:01I was going on 23 when I married Charlie.
05:07They were both very different people.
05:09Charlie had been a Vietnam vet and had had a harder childhood than Deirdre.
05:17But, of course, family for both Charlie and Deirdre were important.
05:22In those days, you were married for two years, you got the house and then you got the baby.
05:26So, their life was looking idyllic.
05:31My experience of being pregnant was one of the best times of my life.
05:39I was absolutely intrigued by what felt like a miracle of life developing in my body.
05:53Deirdre was wheeled off.
05:55I was left pacing up and down and some 15, 20 minutes later, they came out and said,
06:02my mother's fine but the baby's not too good.
06:06They performed a caesarean operation and I was conscious and I could feel him pulling and yanking and trying to
06:14get him out of my body.
06:17He just had a faint heartbeat and he was unconscious for a week and he was having seizures for most
06:28of that time.
06:31There was birth injury, birth trauma.
06:34He had had a brain injury of some kind.
06:38And then all of a sudden, he regained consciousness and I breastfed him the next day.
06:49And it seemed like he'd had a miracle recovery.
07:01Richard and my daughter Rhianna were only six weeks apart.
07:04And so in those early days, they seemed pretty much the same.
07:09You know, Richard was smiling when Deirdre went into him in the mornings and he was babbling a little bit
07:15as Rhianna was.
07:19I guess with child development, because it is an incremental process, it was only over time that it became apparent
07:32what the consequences of the brain damage were.
07:38Dog?
07:40Richard?
07:41Richard?
07:42Richard?
07:42Richard?
07:42Dog?
07:45Dog?
07:47Dog?
07:47It's not gross.
07:49Dog?
07:51Dog.
07:52It seems like there are surprises all along the way and you just never know what he might be capable
08:00of doing.
08:02The dreams of what might be available if he does talk.
08:06I'd really love that.
08:07You know, I'd really love that.
08:11It'd be nice, wouldn't it, Richard?
08:13Hey?
08:15You could say some things to him.
08:19You imagine the story of your life and how it might plan out and what your dreams are.
08:25And sometimes, maybe always, those stories change.
08:32Deirdre was thrown straight into motherhood.
08:36And I think because of the stress that both she and Charlie were under, they didn't grieve for the baby
08:45that he never was.
08:50I first met Deirdre when Richard was about 10 years old and so she had a decade of stresses and
08:58strains.
08:59I felt she was running on empty.
09:03She wanted a film made about various issues to do with disability and with caring.
09:10And that's where the project began.
09:12In again.
09:18Don't.
09:20I said to Deirdre, this can work at its best if it's kind of warts and all.
09:26And to her absolute credit, she has run with that without hesitation for nearly three decades.
09:34I suppose for about six or seven years, Richard had some incredible resistance to car travel.
09:44We're going to go for your new house.
09:48No, no, no.
09:54Richard can't talk, so all he can be in the relationship is basically what he feels.
10:08Stop it, Richard!
10:12Richard's aggression was often driven by his fear.
10:18So it wasn't like it was malicious.
10:20It's not like I hold a grudge against him for hurting me so much.
10:30But it's hard for me to remember how I endured that.
10:38It was confronting seeing her dealing with many of those things.
10:45She said to me a number of times that she really hopes that people can see Richard's humanity
10:50first and foremost.
10:52That she really hopes people can see the person in front of them and not the problem.
10:56And for me that goes to the heart of the matter.
11:05Richard's father and I split up just before Richard turned nine.
11:09And we've come to an arrangement whereby he spends one week with his father and one week with me.
11:14The marriage didn't bust up because of Richard.
11:19Richard was just additional stresses and strains.
11:23At some point Deidre got together with Chris, who is a musician, a wonderful man.
11:31That's the way it is.
11:34That's the way we are.
11:37When we swim against the tide, we don't get very far.
11:42Chris's clear love of Richard was really evident.
11:48And Richard's response to Chris and to his music was a delightful thing to see.
11:59Chris and I, perhaps you could say we were soulmates.
12:07Chris never had children himself, but he seemed incredibly comfortable with Richard.
12:19He would just talk to him as if he would talk to a peer.
12:36About nine years later, when Richard turned 20, Charlie, his father, was his primary caregiver.
12:42And that was the main impetus for making that second documentary.
12:52He wanted to push the boundaries for Richard in all sorts of ways.
12:58Things like taking him riding on the back of a motorbike is fairly hair-raising.
13:03A lot of people think that I'm silly for doing that.
13:06There's unnecessary risk.
13:09But that's fine, we do.
13:11We do our things.
13:12We have good time.
13:18I just love him passionately, dearly.
13:22That's basically what I'm living my life for, is for caring for Richard.
13:28I don't envy the relationship between Charlie and Richard.
13:32I rejoice in it.
13:34I think it's a very beautiful thing.
13:36I really don't believe that I could physically manage his full-time care at this stage in his life and
13:45my life.
13:46I'm not strong enough.
13:49This experience has brought me to fulfil a role which I actually believe is my calling in life, if you
13:55like, and that's in advocacy.
13:58We have called our campaign Time to Care.
14:02She advocated quite a bit early on, but then it gave her that opportunity to put more energy into making
14:09other people's lives better.
14:11My son, Richard, was quite an aggressive young boy.
14:16I would be devastated in the privacy of my own home and open the front door with my plastic smile
14:24across my mouth.
14:26I'm fine, thank you very much, yes.
14:28Got it all handled.
14:29It's under control.
14:31Bye-bye, Richard.
14:32Thank you very much.
14:33You're very welcome.
14:34It's a pleasure.
14:35Okay.
14:36No worries.
14:37See you later.
14:40I think people want disability to be inspiring.
14:45Somehow, people with disabilities and their carers are these noble, bigger-than-life figures, and I think that's a pity.
14:54There are moments, you know, of beautiful tenderness and softness, but there are horrendous times as well, and very, very
15:03challenging times that most people never encounter in their lives.
15:09Come here.
15:10Come here.
15:11Come here.
15:12Come here, Maggie.
15:13You hold that one.
15:14You just stand there, and you hold that.
15:16You hold that.
15:18Now, this is precarious.
15:26Richard's life was very stable, but all that changed two years ago, and the human story has changed dramatically.
15:42Charlie had a heart attack in 2012, and that's when Rich came back to live with me.
15:52Then he was admitted to hospital with cancer.
16:01Charlie didn't last very long at all, so Richard's whole world was turned upside down.
16:10Charlie was able to say goodbye to all the significant people in his life, but he couldn't bear to say
16:20goodbye to Richard, so it was just that his father suddenly disappeared.
16:27Charlie disappeared.
16:32It's so hard to know what sense Richard makes of death.
16:41Daddy?
16:42See?
16:43There's Daddy.
16:44Daddy?
16:45Daddy?
16:46Daddy?
16:48Daddy?
16:51I believe he remembers them vividly.
16:56And why did they leave?
17:06It was devastating. It was so hard for Richard. But Deidre stepped up. She really did.
17:16Rich needs someone with him 24 hours a day, seven days a week. Bathing him, feeding him,
17:24putting to bed, getting up to him in the middle of the night. I was wearing out. I, you know,
17:33I really was exhausted. It wasn't sustainable. I'm about to make my first visit to a group home
17:46to see whether it might be suitable for Richard. On the way here, I started to feel a little bit
17:52emotional because it felt like I'm making a decision on Richard's behalf. Did you know
17:58that Richard's going to come and stay here after Jenny moves out, Richard's going to come up and
18:04just visit during the day? When you have been absolutely committed to the care and wellbeing
18:14of someone you know is very vulnerable, to entrust that to anyone else is very challenging and
18:26potentially traumatic. You know the level of Richard's capabilities, don't you? Yeah, yeah.
18:34The other members of the house, how did that accept him? I think the boys especially, I think,
18:39would be fine. Andrew definitely, he just loves new people. So I think, I think they'd be fine.
18:44And Richard's a nice, really nice guy. He is a nice guy. How are you feeling?
18:55It must be so overwhelming. It's just, you know, it feels like, I don't know, I can't describe it. Just
19:10momentous. The decision has to be right because you can't make mistakes with Richard.
19:17Yes. Bye. Richard settled in beyond my expectations. I was relieved and he was happy and settled.
19:31There were a few support workers that he just absolutely bonded with.
19:51And then within about a six month period, it just all went very, very wrong.
19:57He can't tell us if something has happened to him that has actually caused him to really lose the plot.
20:12He went into hospital at one stage in the making of the third film,
20:17just when Deirdre thought things were going really well.
20:21Take your hand out of your mouth.
20:23At the group home, over three years, there were eight emergency hospitalisations.
20:31Multiple tests were performed, no physical cause identified.
20:38It just proved again how Richard's life is not a linear progression. It is waves of ups and downs
20:46that someone in Deirdre's position just has to navigate.
20:53I've brought him home quite frequently because he hasn't been sleeping well.
20:59He might really be suffering, but he can't tell us.
21:10The last period of hospitalisation coincided with Chris being diagnosed with cancer.
21:25And I don't know how I did, you know, to people in need of my support with that degree of
21:34intensity.
21:36I am absolutely exhausted now. And what I had been trying to do was to get Richard's life settled
21:49so that he wouldn't depend so much on my capacity.
21:57And I just...
22:00I don't know how to help him overcome what he's going through now.
22:15Charlie had left some financial resources for Richard and before we finished filming
22:23the third documentary, Deirdre was talking about building a house for Richard.
22:31That was a process that began about eight years ago. This was the original house.
22:41There's the slab being laid. There's Richard helping out on site.
22:50I would say it would have been 16 to 18 hours a day for months and months and months and
22:56months.
22:57And we got the handover of the keys in July 2020.
23:04So Richard is secure for the rest of his life because this is his home.
23:23I think Richard is content.
23:29He has support staff on site 24-7.
23:36Six days a week he goes out into the community with a different service provider.
23:45He leads a very healthy, regulated, ordered life.
23:58I think maybe slightly ironically the challenge now is for Deirdre's accommodation and what she
24:04does in the next stage of her life.
24:10Most of my adult life has been focused on caring for other people and I'm not very good at caring
24:21for myself. And I feel like there is a progressive deterioration on multiple levels.
24:29This past week I've been staying up at Richard's place.
24:32Lovely.
24:33Yeah, because he's got support staff up there and now I feel quite vulnerable about the possibility of
24:42living alone. My beloved partner Chris passed away May 2021.
24:51It was a very gentle transition of gradually fading. He was very peaceful.
25:11I bought this a while ago. Richard doesn't use it, but because my back has been so bad,
25:18the reach suggested that I might benefit from trying it myself.
25:23Can you do it without your glasses? Can you see? No.
25:26My current quest is to mobilise a team for Richard that can be trained in what I do,
25:37so that if I fall asleep and don't wake up, it's just a smooth transition and business as usual.
25:47How does that feel, Deirdre?
25:49Good at school.
25:49Wonderful.
25:52Our intention is to set up a legal entity called a micro board. My hope is that because all of
26:02you
26:02have been involved in Richard's life over an extended period of time, we'll be able to contribute their
26:10knowledge, insight and care.
26:23So we've started the process of establishing Richard's micro board. It's hard to say at the moment just how long
26:29it
26:30will take before it's operational. That should be straightforward.
26:33She would like to hand it over, but she has to have a really high degree of confidence
26:41to be able to do that. And Deirdre's not there yet.
26:47Now look at this. Just a minute. I might see what that looks like.
26:55Every day I take photos and I find it very restorative.
27:03If there's an overarching theme for me that comes through the documentaries,
27:07it's that notion that care has to be shared and we need to care for carers as well as caring
27:13for
27:14the most vulnerable amongst us. I love capturing sunlit clouds, but I also love capturing birds in flight.
27:26Deirdre is an unheralded champion along with lots of other people like her.
27:31I think it's roughly three million people in Australia have a caring role in one form or another.
27:40If someone like Deirdre, who has extraordinary capacity, education, ability to navigate bureaucracy,
27:46if she still finds it hard, how much harder must it be for someone who doesn't have that level of
27:53capacity?
27:54We've been a bit light on with birds lately. I don't know why.
27:59Oh, look, there's a little birdie.
28:11Hello Richard. It's mummy here. I had an idea that I would make you some video clips
28:20that you could watch if I'm not around to show them to you. But right now, what I'd like to
28:29say to you
28:31is how much I value your contribution to my life. I could describe you as a life coach because...
28:44Who are we to judge when a person's life is worth living or not? What is the bottom line?
28:51If not our intellectual capabilities, what is it that makes us essentially human?
28:57A worthwhile member of the human race deserving of a life to be lived?
29:03Perhaps the real tragedy is not that there are people born who are less capable and therefore more
29:10dependent on others to care for them and to meet their needs, but that there are too many other
29:16so-called intellectually normal people who are severely handicapped in their capacity to give and care for others.
29:26The last thing I want to say to you, Richard, is that I love you with all my heart
29:35and I am so grateful that you've been a part of my life.
30:03Excellent!
30:06Happy birthday to you, happy birthday to you, happy birthday dear Richard, happy birthday to you,
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