Reporter: Anne Connolly

Date: 30/10/2006

KEN WILLIS: I always regard it as a labour of love. It wasn't any great chore. If somebody told you, at the outset, what you would be doing for your partner, you would never have realised it. You couldn't accept it.

JOAN KLAJMAN: I think the bond and the connection is stronger because we're helping each other. He knows that I'm helping him.

ANNE CONNOLLY: There's a quiet epidemic sweeping Australia and the world. It's called dementia. As the number of cases increase, so too does the pressure on families, who care for loved ones at home until it becomes too much and they're forced to place them in institutions.

JACK LAMONT: Making that decision would be the hardest possible decision that anybody could possibly make. I was absolutely despondent for the first six months. I really was. I was thinking that, "What have I got to live for?" I was almost suicidal.

ANNE CONNOLLY: For the past 12 months, Four Corners has followed three people with dementia. For their families, it's a slow grieving process. For them, it's a journey of no return.

Morry Klajman doesn't always remember his birthday, or, for that matter, his age, but his family would never let him forget it.

MORRY KLAJMAN: We have four children, three boys and a girl, and then we have extended family of their wives and their children. So, there's nine grandchildren all up. Sometimes I don't remember their names, but usually Joan takes over and says their name, whether she does it purposely or not, but that reminds me what the name is.

ANNE CONNOLLY: Three years ago, Morry, who used to be an electrician, finally discovered the reason for his memory lapses. He has vascular dementia, caused by a series of small strokes that disrupt blood flow to his brain.

MORRY KLAJMAN: I mean, I don't really feel like I've got dementia, except it creeps up sometimes, you know. And I could clean forget what I've done, say, a couple of minutes ago, or a minute ago, not a long time ago, but, in the short term, suddenly just forget completely.

JOAN KLAJMAN: The doctor's a friend of Morry's, and he never noticed. Maybe he didn't want to accept it, because there's a lot of non-acceptance for dementia. He'd say, "Oh, Morry's okay," put him through a little test and say, "Well, he seems alright to me, you know." But he wasn't living with him, and wasn't coping with strange behaviour and the frustration and everything else, and I finally insisted. And that was hard, to get him to refer me.

ANNE CONNOLLY: Morry was diagnosed after a specialist gave him a series of neuropsychological tests.

JOAN KLAJMAN: He's asked Morry who the prime minster was - - -

MORRY KLAJMAN: Yeah, I know - like, I'm interested in politics and I know the name of the prime minister, and when he asked me the prime minister, "That's no problem," and, guess what? I couldn't remember - couldn't remember.

JOAN KLAJMAN: Well, Morry used to be a great cook. Now he looks in the fridge - if he tries, we end up with a mess. So he doesn't do it anymore. Now he'll say, "I'll do the dishes," he'll forget halfway that that's what he was going to do. You might find dirty cups in the cupboard.

Morry used to pay all the bills and do all the financial part, because that was his job. Now I have to do it. I'm not that skilled in it. They're things I need to take over and do.

ANNE CONNOLLY: For the past six years, Alzheimer's Disease has slowly been consuming the life of 75-year-old Joan Willis. Alzheimer's is the most common form of dementia. It's a physical disease which kills brain cells and affects memory and behaviour. After being diagnosed, Joan remained in denial.

KEN WILLIS: She had been such a bright girl. She did her Leaving Certificate at 13 years of age, which is quite something, in those days, and went on to top business college after that. And, from her point of view, it was disbelief. And I suppose, to some extent, it was almost disbelief for me. I couldn't understand that my close pal for years was going to have this problem, and it was going to be progressive.

I got to the stage where I now have to lock the front door if I go out, and I turn off the water at the water meter so that she doesn't flood the house. One of the unfortunate things with Alzheimer's is they can turn on a tap, but forget to turn it off. I can't have a meaningful conversation with her. We can talk, but conversation's a two-way thing and you can't really have a conversation.

We were fortunate to get a little dog from a rescue service, and he's been great for her, and that keeps her company.

JOAN WILLIS: What are you looking at?

KEN WILLIS: Just to see if you want any more yet.

JOAN WILLIS: Any more what?

KEN WILLIS: Food. Any more steak and tomato. Here you are, darling.

We still have a very close group of friends, but it's interesting, the effect it has on people. I'm sure it's the situation that friends just don't know how to cope with it. So that the dinner parties and that sort of - that we've had for years have all gone. It's, to some extent, a fairly lonely life as the disease progresses.

ANNE CONNOLLY: Ken is Joan's full-time carer. The only outside assistance he receives is when his wife goes to a local respite centre for dementia sufferers. She goes three times a week.

KATE FREDERICKS, RICHARD GEEVES RESPITE CENTRE: Joan would have been coming here now probably for, probably, about 12 months, and we have seen a decline.

I think, once we connect with Joan, you see her old spark, her sense of humour. She loves us to tease her. She teases us back.

Ken is a fiercely independent carer. And I know they've had assessments from the Aged Care Assessment Team, and other help has been offered, but Ken is - I think, really wants to do the bulk of the caring for himself - or by himself. And he manages it absolutely magnificently.

KEN WILLIS: Well, I've decided not to utilise those services because I'm - as I said, I'm still physically fit and I just don't feel that I need to call on other people to do it. As long as I can do it, I will do it. I've always been a doing sort of a person.

KATE FREDERICKS, RICHARD GEEVES RESPITE CENTRE: I think, as Joan deteriorates, the actual hands-on care will become very difficult for Ken, and, probably, by then, he'll be ready to accept professional care. Joan means the world to him, and I think, when Ken has to make that final decision to put Joan into care, it will be a very difficult one for him.

JACK LAMONT: It was in the early '40s, at an old time dance at Merrylands. Occasionally I had dances with Daphne, and this friend of mine said, "Jack, she's a lovely lady. Why don't you make her acquaintance?" And that's where it all started. She was a very, very attractive young lady. She was a good dancer. She was, really, very joyful company to be with. She was wonderful.

ANNE CONNOLLY: Jack Lamont and his wife, Daphne, are both 84-years-old. Daphne was diagnosed with vascular dementia nine years ago and later developed Alzheimer's Disease. This Alzheimer's Australia video shows Daphne as she was three years ago. It was made to show how dementia affects the brain.

WOMAN: Can you get the cups for me.

DAPHNE LAMONT: get the cups here?

WOMAN: Yes, that's right. And pop it on the saucer. There's one.

DAPHNE LAMONT: That's the saucer.

WOMAN: That's the saucer. Yes, that's right.

DAPHNE LAMONT: The saucer's over there. The saucer's over there, Jack.

WOMAN: No, that's the teapot, Daphne, that's the saucer.

JACK LAMONT: Well, she tried to eat the flowers. She didn't know a cup from a saucer. So it was really revealed that the everyday automatic things that you would almost do blindfolded are beyond her now.

ANNE CONNOLLY: But while Daphne's memory of routine tasks was fading, her love for Scottish dancing remained. Music is popular with those who have dementia and can help them communicate.

JACK LAMONT: Her comprehension ability to hold a sensible conversation had all gone, her memory was basically gone, but she could still dance - still dance. But, of course, that's diminished now. She's down to just almost a shuffle and, of course, her memory of the dances has completely gone now.

ANNE CONNOLLY: Today, Daphne lives in Chesalon Nursing Home. Jack faithfully visits three times a week but his wife is not always aware of his presence.

DAPHNE LAMONT: Jack didn't come on a train?

JACK LAMONT: Jack?

DAPHNE LAMONT: Did he?

JACK LAMONT: Yes.

DAPHNE LAMONT: When, on that day?

JACK LAMONT: No, I'm Jack.

DAPHNE LAMONT: Oh, did he?

JACK LAMONT: Yes. Yes, I'm Jack.

DAPHNE LAMONT: Oh, he'll come off.

JACK LAMONT: Your Jack, yeah.

DAPHNE LAMONT: Yes, he'll come off.

JACK LAMONT: Yes, he's going to come again tomorrow too.

ANNE CONNOLLY: This unit is only one of a handful in the country catering specifically for people with dementia. There are just 10 beds. Staff here are trained to cope with the often challenging behaviour that this condition produces.

JACK LAMONT: I'll never forget the words when Daphne was initially assessed with having vascular dementia. At the end of her interview the interviewer or psychologist came out to me and she said to me, "Jack, well, it's a terminal illness. There's no medication. There's no cure." That was a shock.

ANNE CONNOLLY: This is a course run by Alzheimer's Australia for those in the early stages of dementia. For Morry and the others here it's a rare chance to meet people facing the same future and talk about their diagnosis.

COUNSELLOR: What was it like for you when you found out you that had Alzheimer's?

LES: I couldn't believe it.

COUNSELLOR: It was a shock?

LES: Yes, because, really, it must come on slowly. My wife had noticed it. There were certain things that I wasn't doing that I used to do.

MARGARET: You don't expect it. And I sort of think, "Why me? Why me?" I've been a teacher and all these things, and being named with Alzheimer's, it's immediately, "Oh, dear, Alzheimer's?" People treat you differently.

ANNE: We have problems but we're not different than anyone else, and, I mean, at my age people would never expect me to have Alzheimer's.

COUNSELLOR: Do you mind me asking, Anne, how old you are?

ANNE: 51.

MORRY KLAJMAN: I think that there is a stigma to dementia, and that is what drives us to try to keep a closed house.

JOAN KLAJMAN: There's so much lack of understanding with dementia. You say “dementia” and people sort of shy away and they think it's something terrible or you can catch it, but when you understand that it's an illness, a terminal illness, that the people can't help, it makes it a little bit easier to understand, you know?

ANNE CONNOLLY: It's four months since Morry's birthday. He's no longer allowed to drive or go out alone. Today he and his wife Joan are on one of their twice-weekly visits to the local pensioners' club.

JOAN KLAJMAN: It's been a godsend because it gives us something to do, something to occupy our minds. Morry has fun with different people. It gives us a bit of separation. It's very, very good.

ANNE CONNOLLY: And what are you like at canasta, how's your game?

MORRY KLAJMAN: You better ask Peggy. Peggy is a very good player.

PEGGY: Well, he's very good. He came about six years ago and he was just picking it up and he picked it up very well. And he's learnt all the tricks of the trade but this last six months he's gone downhill a bit. You've got to watch him, that he doesn't pick up and doesn't throw out all the time.

ANNE CONNOLLY: Is Morry aware of how things are progressing?

JOAN KLAJMAN: No, he doesn't realise how bad he gets, no, and I don't emphasise it. If he makes a mistake, we gloss over it and fill in the gaps.

ANNE CONNOLLY: Morry's steady decline has focused Joan's mind on the future. Next week she's going to a seminar on choosing a nursing home.

JOAN KLAJMAN: There's a lot of nursing homes out there who are not up to scratch, and I want to pick the best I possibly can for Morry. It's an emotional decision, you don't want it to happen.

ANNE CONNOLLY: Do you think that it's going to happen sooner than you originally thought?

JOAN KLAJMAN: I hope it doesn't happen for 10 years but that's just what I hope - that doesn't matter. However it progresses, it progresses, I can't change that. How much you want it not to happen, you can't change that. So we can only have fun the best we can.

KEN WILLIS: It's probably a special Christmas because it may be the last time that we've got everybody together. It's unfortunate, what's happening with Joan. We just don't know what's happening and she's going downhill fairly quickly now.

LYN PEACOCK: My mother always had a very, very good memory and - interested in everything we did. She was incredible. She was very active. Used to only - probably a year ago, still used to be climbing trees with the kids, you know. She was very active and very, very quick-witted and a wonderful caring mother, and now all that's gone.

MARK WILLIS: He's really looking after her every tiny little need. I think really it's starting to become quite draining on him, more so emotionally than physically.

ANNE CONNOLLY: Ken and Joan Willis have four children. Two are interstate and Mark and Lyn live in Sydney near their parents, but have little to do with the day-to-day care of their mother.

KEN WILLIS: They're all great, close to us, and they're very close to each other, which is definitely wonderful. So they come down when they can but it's infrequent. And it's just something I accept. We talk on the phone. The phone is the greatest communicator of the lot, but, no, they don't come very often, because they just don't know what they can do.

MARK WILLIS: Christmas, I guess, wasn't the same as what it's been in the past. Now Mum was almost like a bystander in that whole celebration.

LYN PEACOCK: We were very close when we were younger but it's just as if she's just a different person now. Her personality's totally gone and - I think she still recognises me but I don't feel the connection that there used to be. It's really, really difficult because my mother is still alive but it's not my mother, and it's in her body, virtually, and that is very difficult, very difficult to deal with.

ANNE CONNOLLY: Today, Ken is having an appointment with the Aged Care Assessment Team to see whether Joan should go into a nursing home.

CATHERINE QUINN: You still have your morning walks, Joan, do you? Do you still take him out in the mornings, this little guy? Does he still go out in the mornings with you?

JOAN WILLIS: No, not much, not much. No, no.

CATHERINE QUINN: So, do you still walk every morning?

JOAN WILLIS: No.

CATHERINE QUINN: At least in this hot weather it's a bit hard to keep doing those things, isn't it?

KEN WILLIS: Yes, we actually walk every morning, twice a day.

CATHERINE QUINN: Yes, yes.

ANNE CONNOLLY: The assessor, Catherine Quinn, must decide whether Joan should go to a hostel, which caters for people who are relatively independent, or to a nursing home with high-level care.

KEN WILLIS: I mean, she's totally dependent on me, I mean, she used to be able to clean her own teeth, but she doesn't now.

JOAN WILLIS: I just can't - can't be bothered.

KEN WILLIS: Feeding herself or drink, or anything at all.

COUNSELLOR: So, those things have changed just in the last couple of months.

KEN WILLIS: That's right. I could go out and leave her with some lunch and a drink - - -

JOAN WILLIS: I've told you to.

KEN WILLIS: - - - or something like that.

CATHERINE QUINN: But he won't do it.

JOAN WILLIS: No.

KEN WILLIS: She just doesn't touch it.

JOAN WILLIS: I'm too stupid, you see, to do that.

CATHERINE QUINN: It's not so much, you know, it isn't being stupid, either, Joan. It's just that, zap, you know, when you have an illness like this, it's sometimes that bit of the brain that used to be able to manage it just doesn't manage it anymore.

ANNE CONNOLLY: After an hour, the assessor leaves Ken and Joan with her recommendation. Joan needs high-level care in a nursing home.

KEN WILLIS: It certainly would be hard to let go. It just seems unreal that my partner for years will be going to live somewhere else, and it's not an easy decision to make. But I'm just trying to face the reality of the situation, that it's going to have to happen sooner or later.

JACK LAMONT: I started off very soon after Daphne took up residence there, I started to make cakes - banana cakes, chocolate cakes, ginger cakes. And somebody said to me, you know, "Why don't you try making muffins?" And I thought, "Well, I'll give this a shot." So I bought the Women's Weekly muffin book, and a muffin tray, and I've done it ever since. It's a standard routine now, to make muffins for all the dementia patients. I'm sure it's appreciated.

ANNE CONNOLLY: Jack Lamont hasn't been at the nursing home long, when a staff member calls him to a very distressed Daphne. A routine trip to the bathroom has gone awry, and nothing will console her.

DAPHNE LAMONT: Yes, they knocked me right over.

JACK LAMONT: They wouldn't have done that to you.

DAPHNE LAMONT: Yes. Yes. They tipped me right over.

JACK LAMONT: No.

DAPHNE LAMONT: Yes. Yes.

JACK LAMONT: Yes, yes, love. Let me wipe your eyes. Yes, darling. Yes.

DAPHNE LAMONT: I haven't got anybody, no, no, no, no, no...

JACK LAMONT: You've got me, Daphne.

ANNE CONNOLLY: The home's diversional therapist takes Daphne and Jack to the sensory room. It's a space specially designed for dementia patients, to stimulate the senses.

DAPHNE LAMONT: Yes, we got it all over us - it was beautiful. Yes, it's beautiful. I'm Daphne, now I'm better.

JACK LAMONT: Yes, of course you're better.

DAPHNE LAMONT: I'm better, now.

JACK LAMONT: You're a lovely Daphne.

DAPHNE LAMONT: Yes, I'm better now.

JACK LAMONT: Of course you are.

DAPHNE LAMONT: Yes.

JACK LAMONT: I know. Yeah, right, of course you are. You're my lady.

DAPHNE LAMONT: Yeah.

JACK LAMONT: Always have been, haven't you?

She's losing weight fairly rapidly. She's going through these crying periods. I wonder - particularly, you know, in recent times, visiting Daphne, and knowing that she's going through these teary periods, which is a sign that she's in a late stage of dementia, that you wonder just how much is going on in her brain.

ANNE CONNOLLY: It's nearly 12 months since we first met Morry. Today, his eldest son, Garry, is taking his father out for lunch, as he does every Saturday.

GARRY KLAGMAN: I notice more things happen now, as he's progressing in his dementia. Like, today, for example, there was no discussion, there was no questions – normally we'd go though a patter of - dad asks me how my week was going, or he'd know a little bit about what's happened in the news.

Mum said you weren't feeling well this morning. Do you remember what that is?

MORRY KLAJMAN: She follows me around, says, “Oh, feeling bad this morning.”

GARRY KLAJMAN: We all have good days and bad days, don't we?

Dad did go through the grieving process with Mum, the first time. But it hasn't been reset for him. And - and maybe he accepts it more, because of that. It seems like Mum's losing Dad a little bit by little bit over time, and it seems to retrigger certain parts of the grieving process again, and she goes through those stages, cycling through them, time and time again.

ANNE CONNOLLY: Morry is having his half-yearly check-up with the geriatrician. He has a physical examination, and takes memory and other cognitive tests.

DR KUJAN NAGARATRUM: Tell me what year it is. Do you know what year this would be?

MORRY KLAJMAN: Yes, '79, I think it is.

DR KUJAN NAGARATRUM: '79?

MORRY KLAJMAN: That's my age, well.

DR KUJAN NAGARATRUM: Yeah.

MORRY KLAJMAN: No, I can't remember it.

DR KUJAN NAGARATRUM: 2006.

MORRY KLAJMAN: Yeah, 2006.

JOAN KLAJMAN: He's doubled up on his medication a couple of times. And I give him his medication, then he'll go to the fridge and get more when I'm not looking.

DR KUJAN NAGARATRUM: I think it's time to make sure you sort of supervise it, and he doesn't have any access to it himself, and it gets very critical.

JOAN: I'll hide it. I'll have to hide it because he's very independent.

DR KUJAN NAGARATRUM: I have seen a significant decline, especially over the last year. If you look at it from the carer's point of view, it's like looking after a small baby - you are constantly on the alert that something wrong doesn't happen. And so it takes a heavy toll if you don't have enough support.

ANNE CONNOLLY: Morry goes to Rosewood Cottage, a respite centre, once a week. Following the check-up, his doctor wants him to go for an extra day - for Joan's sake.

JOAN KLAJMAN: Well, I'd like an extra day of respite but at the moment Morry enjoys the pensioners' club and, while he enjoys that, that's where we'll go. As soon as it's not fun for him, I'll be happy to accept the extra day of respite.

ANNE CONNOLLY: It's six months since Joan Willis was assessed for placement in a nursing home. Two days ago, she was offered a permanent place in a hostel. She has long been incontinent and her physical and mental condition is further deteriorating.

KEN WILLIS: I've got to physically lift her out of bed, I've got to physically lift her out of a chair. I'm a bit worried about myself as to - of losing patience, which is very difficult. I get so frustrated just even trying to feed her or trying to do something else and she just doesn't want to eat. And it's terribly disconcerting for me.

ANNE CONNOLLY: Ken is going to put her into the hostel for a trial period of a week. This will give him a chance to decide whether she should remain there permanently.

KEN WILLIS: It's a very hard decision to make - you've got no idea. You can talk about these things for a long time, but when it actually comes about - it created a hole in my stomach like - you've got no idea the feeling it's created, just to sort of let go.

ANNE CONNOLLY: It's a few days later. Ken tells Joan she's going on a holiday.

Although she was assessed as needing to go into a nursing home, this hostel is approved to take people like Joan who need a high level of care. In fact, half of this hostel's 88 residents are classified as having high-care needs.

Ken has a week to decide whether to make it a permanent move for Joan. As a self-funded retiree, it will cost him $40,000 a year in accommodation fees if Joan does stay.

WOMAN: Who's going to visit?

KEN WILLIS: Probably our eldest daughter, Lyn, and our youngest son, Mark.

WOMAN: Right. OK. Now, does she recognise them?

KEN WILLIS: I think she'll still recognise the children.

WOMAN: OK.

KEN WILLIS: Yeah, they're Lyn and Mark.

WOMAN: Now, she may not, so you'll - while she's here, so you'd better prepare them for that.

KEN WILLIS: I can't believe the effect it's having on me, frankly, as I've always been an independent sort of a person. And, you know, I thought I could detach myself from that but I can't, I can't. Whether she in fact comes home after the week, I just don't know. But it's to break me in, not to break her in to the situation, because she's virtually oblivious to the situation.

ANNE CONNOLLY: It's 60 years since Jack Lamont married his dancing partner, Daphne. Today their children, Greg and Sue, have helped to organise a party at the nursing home.

Over the past few months, Daphne has been losing weight and is sleeping for longer periods.

SUE: Here's to enduring love. And I know that it's love that both of you have for one another because it's still very evident that Mum is very much in love with you. And I know that you're in love with her. Congratulations. Congratulations, Dad.

JACK LAMONT: There's no way that I would have changed anything, really, the wonderful 60 years that I've had with Daphne, yep, and I'll be with her till the end.

DAPHNE LAMONT: You're good, aren't you? Of course, the cake was made by Jack.

GREG LAMONT: I really don't see much of my former mother when I go and visit her. You know, I just see a physical person that has deteriorated and that I really have to remind myself about the way Mum was. I hope my mother has a stroke and just falls asleep, and doesn't wake up. That'd be the great thing. It would really distress me for Mum to have some sort of organic disease that she doesn't understand. That she's in pain but she can't communicate that, and her quality of life just goes downhill.

Our concern is when Mum does pass away that - what's he going to do? His life is focused around both her and Alzheimer's issues, carer's associations and whatever, and we wonder where his focus is going to be and how he's going to cope with his life then.

ANNE CONNOLLY: It's a year since we began filming with Jack and Daphne and six months since they celebrated their anniversary. Daphne is now confined to a wheelchair and Jack has become a fully trained volunteer at the nursing home. As a volunteer, he can now feed her the main meal of the day. Her weight has subsequently increased.

JACK LAMONT: I think Daphne needs quite a lot of prompting and assistance in having her meals. At times I don't think she realises, really, what food is or where it should go.

ANNE CONNOLLY: There is a risk Daphne may soon lose her ability to swallow. Jack has given instructions to the nursing home staff that he doesn't want his wife to be tube fed.

JACK LAMONT: I think comfort and dignity is the way that I want it to be.

ANNE CONNOLLY: Ken Willis decided after a week that Joan should stay at the hostel permanently. He visits every day.

KEN WILLIS: I thought, "Well, it won't make it any easier if I bring her home." Next time it'll be, probably, worse. We've been inseparable companions for over 50 years, that's what it came to. We did everything together. It's hard to come to grips with - that she's gone. The house seems terribly big and terribly empty. I just can't get over that. I just don't know why, but it does feel terribly empty.

ANNE CONNOLLY: Daphne Lamont is still at the nursing home. Jack continues to wash and iron her clothes as he has done for over a decade now.

JACK LAMONT: It's a very, very personal thing, that keeping contact with Daphne. It might feel strange, through handling her clothing and caring for it, but it does give me a feeling of togetherness, that I'm doing that. I think I would be foolish to say that I won't go through a very real grieving process, even though it has been, to an extent, a slow grieving process anyway. But I think it'll still be a terrible loss.

ANNE CONNOLLY: Morry Klajman remains at home with Joan. He hopes to stay there for as long as possible.

MORRY KLAJMAN: You can have a carer, but they go home and they don't have to worry about what's happening to me, or - they wouldn't know it, but Joan is a totally different thing. As a matter of fact, you know, I think that if it wasn't for my wife I might be in a different way.

JOAN KLAJMAN: It's very hard because you know that there's no cure, you know that they're dying. It's a slow process of them forgetting. You grieve for the loss of your partner, your mate, your buddy. And you know the grieving is not over. Excuse me. You know that it gets worse before it's over. And that hurts. It really does.
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