The Dementia Dilemma

The Dementia Dilemma

People are uneasy being with friends who’re exhibiting dementia. They talk for them; they talk over them; they don’t wait for the reply when they’re slow responding. They’re just … uncomfortable. They’ll cross the street to avoid meeting face-to-face.

by Paul Freedman

ANGELA: I looked after my husband Brian for 14 years … mainly on my own. (I was too proud to seek help.) The field officer challenged me, “For heaven’s sake go and join a support group!” So, finally, I did – and immediately wished I’d joined them years before! I got an immense amount out of it, and looked forward to every meeting. I learned so much! 

The book contains lots of the stories we shared about managing our situations with husbands who had dementia.

GRAPEVINE: What did Brian suffer from?

ANGELA: He had something called Lewy Body Dementia. Originally he was diagnosed with Parkinson’s Disease. The neurologist who diagnosed him sent a letter to our GP saying, “Brian Caughey has Parkinson’s Disease and also significant dementia” – but no one told us about the dementia, I think because of the stigma!

People are uneasy being with friends who’re exhibiting dementia. They talk for them; they talk over them; they don’t wait for the reply when they’re slow responding. They’re just … uncomfortable. They’ll cross the street to avoid meeting face-to-face.

Most of Brian’s friends supported him greatly – except one, who hated to see him turning into a shambling wreck, and stayed away. Brian noticed and was very hurt. You see, the person with dementia is still there inside!

Anyway, after the Parkinson’s diagnosis, Brian joined the Parkinson’s Society. But, a year down the track, he said, “There’s something else going on. We need another opinion.” So we saw a gerontologist who told him he had Alzheimer’s. Now he joined the Alzheimer’s Society. But he didn’t have Alzheimer’s. There’s a difference between the various types of dementia you can get.

GV: So is ‘dementia’ a sort of blanket term, covering several different conditions?

ANGELA: It’s a blanket term for chronic illnesses in the brain. My big campaign (and a major reason for the book!) is to help get rid of that stigma I mentioned.

GV: I’d never heard of Lewy Body Dementia. You describe sufferers sort of tottering – they begin to lose their balance and start to run, faster and faster, till they crash. That sounds an awful thing to live with!

ANGELA: When Brian got it, most doctors hadn’t heard of it either. The neurologist sensed he had some sort of dementia, but it was the Parkinson’s people who finally told him he had Lewy Body Dementia (LBD). It’s very similar to Parkinson’s … but different. Not everybody who has Parkinson’s develops dementia. 

With Lewy Body Dementia you go downhill in stages. You have lucid intervals. You hallucinate. You fall. Brian would fall three or four times every day. And you’re allergic to anti-psychotic drugs that the doctors may give to people with dementia.

GV: So, what are the warning signs of dementia?

ANGELA: You probably find you’re just not coping with life. And the people living with you notice it. The first thing for us was an amazing hallucination. We were in Australia, playing a round of golf. We’d both lost our balls in a stream. I dropped a new ball and chipped onto the green, and turned just in time to see Brian drop nothing at all, and then ‘chip’ the nothing in the direction of the green. We then walked to the green and he asked me, puzzled, “Where’s my ball?” I had to describe to him what he’d done. 

This was a good two years before we noticed any other dementia symptoms.

We’d always had a good, loving marriage, but I slowly began to think Brian was … ‘going off’ me. He stopped getting my breakfast in the morning. He didn’t put things away where they were supposed to go. And he’d be very grumpy if I’d correct him – “Look, that’s supposed to go there!”

He wasn’t coping in business … and he knew he wasn’t. He was also getting a bit tottery. (That was the Parkinson’s side). But the condition does start, typically, years before people realise … before the symptoms are so bad that they go for a diagnosis.

GV: We tend always to associate dementia with quite elderly people, but it can affect younger people too, right?

ANGELA: Yes. When Brian first got it, I bought a book called Who Will I Be When I Die? by Christine Bryden. She had two teenage daughters and was only 43 when she was diagnosed. She’s a shining example of managing her dementia. She wrote several books; she went around America speaking; she remarried (to a man who knew she had Alzheimer’s); and much more.

GV: So she wasn’t gravely affected by her Alzheimer’s?

ANGELA: Seems not. When you have dementia, you’re affected in different areas and in different ways. At first you can live almost normally, but can’t cope in certain areas – usually associated with memory.

GV: One of the questions you pose in your book is: “What’s going on in the heads of people with dementia?” So … what is?

ANGELA: Well, dementia is a physical condition affecting different people differently – perhaps in their movements, or hearing, or speech, or logic – all or any of these. The person’s still there inside, but their brain’s not working properly. 

Billions of neurons have got tangled, misshapen and misdirected. They don’t analyse what they hear, as they did before. Colloquialisms, for instance. If I said to Brian, “Come on, hop in the car,” he’d be confused. He’d think he was being instructed to hop. 

GV: Are there drugs that can cure or alleviate – or even just arrest – dementia?

ANGELA: Not really, although the Neurological Foundation think they might be making some headway in their research. Brian was given a drug which was supposed to slow down Alzheimer’s deterioration for two years. The doctors were quite surprised when the tests they gave him showed it slowed his deterioration down for four or five years.

GV: Most of us probably worry as we get into our fifties, sixties and seventies that we’re becoming more forgetful. We lose things, forget to do things. Where is the borderline between ‘normal’ forgetfulness and dementia?

ANGELA: Well, I sometimes forget people’s names (even people I know well). I forget little things, like exactly where I parked the car in the parking building ...

GV: Don’t we all do that?

ANGELA: Yes. But if you forget that you’ve even taken the car … or that you even own a car … that’s not normal. To forget what you had for breakfast yesterday … that’s normal. To forget that you’ve already had breakfast, and want more breakfast now – that’s not normal.

GV: Is dementia always progressive?

ANGELA: Yes … 

GV: It can’t be slowed?

ANGELA: Not usually – but I think with Alcoholic Dementia, if you stop drinking you get no worse.

GV: Alcoholic Dementia? Goodness, there’s another one I’ve never even heard of! Alcoholism I know – but not alcoholic dementia. So how many different types of dementia are there?

ANGELA: Well – dementia isn’t the illness. It’s a word we use to describe a set of symptoms. There are 86 different terms we give to these symptoms brought on by strokes, allergies, alcohol, mad cow disease – all resulting in malfunctioning or injured brain neurons. The dozens of symptoms are mixed and matched and shared by all of them. The treatment, actually, can only be managing those symptoms. The disease itself can’t be ‘cured’ … at least, not at the moment.

GV: And so people with dementia often need somebody to help them – maybe even live with them?

ANGELA: Many people with dementia live by themselves. But, yes, even in these cases they probably need someone just keeping an eye on them from day to day. However, once they reach the stage of severe symptoms, they really do need quite a lot of care.

I remember when Brian was diagnosed, the doctor said, “Don’t worry, Brian. You’re very fit! You’ll probably still be going at 80!” (At this time Brian was about 68!) We looked at each other and thought, “Oh crikey! We don’t want it to go on that long!” 

The carer’s well aware it’s going to be a long haul. But I can only say that, despite everything, the whole process was terribly … enriching.

GV: ‘Enriching’? That’s a surprising word. It seems hard to believe, really!

ANGELA: I think it was partly because I learned such a lot. I experienced the friendship of the other people in the support group. I knew what they were going through … what we were all going through. It was satisfying for those of us who managed it okay.

I know other people who looked after dementia sufferers and had one hell of a ride – because they fought it. They battled to keep the person they were looking after immaculate and ‘in order’.

GV: How does a carer who’s living with the dementia patient (say a spouse or a parent) get a life of their own? Are they doomed to be ‘on duty’ 24/7 – forever?

ANGELA: It’s vitally important not to! It’s essential to have the person with dementia accept the fact that occasionally other people are going to be part of their lives, and the carer isn’t always going to be on tap. I mean, after all, the carer might die! So the dementia person has to accept that, at times, other carers will be involved.

GV: I guess there are mileposts in this process that are particularly difficult? Like telling the person you’re looking after that they’re no longer safe to drive, or that they can’t deal with money?

ANGELA: Ooooooh yes! Driving is a big one. You know, Brian went to his grave furious that he was no longer allowed to drive. But, really, he should’ve stopped four years before he actually did. The other big milepost – and this is back at the start – is actually being told that you’ve got dementia. That’s perhaps the biggest milepost for many. Although Brian accepted it immediately, many others fight it and refuse to acknowledge that there are things they can’t do – and they can make life very difficult for themselves and their carers.

Another big milepost was incontinence. That’s very hard to deal with. 

Brian couldn’t manage his clothes, and he changed from being a smart, immaculate dresser into a shambling man in a track suit. He was well aware of the contrast. The person you knew is still inside and they notice their own mileposts.

GV: I can understand appearance being important, but surely there’d be more vital issues – safety issues – like leaving on heaters or stove elements? Presumably a carer has to exercise some judgement about when to say, “No, you can’t do that any longer”?

ANGELA: Yes, you’ve put your finger on it. It’s best for the carer not to confront, but to just “arrange things” … so that the dementia person doesn’t notice. (And quite often they don’t.)

GV: This all sounds very grim. Are there funny moments? Breaks in the routine?

ANGELA: Well yes – and there should be more. One of my regrets is that I was such an earnest, conscientious carer that I guess there wasn’t much light-heartedness. But one day, when I was taking Brian off to respite care (which I was finally granted and which kept me going!) he insisted on wearing his tweed cap, and as he got into the car he knocked it askew. He looked very funny and I laughed. He turned around to me and, with his face typically expressionless, said, “I wish you’d laugh a bit more often!”

I speak all over the place, and I say to people, “Just be as full of laughter as you can – it makes life easier for everyone.”

GV: Tell us about Janine and Geoffrey and the “other woman” in bed with them.

ANGELA: Well, Janine and Geoffrey still shared their double bed as his dementia advanced. She hopped in one night and put her arm around him. He turned to her and said, “Oh! There you are! I’ve got another woman in bed with me!”

Janine thought quickly – what to do? She kept in his reality, and asked him, “Really? What’s her name?” And he turned around to the empty bed and asked, “What’s your name?” Then he turned back to Janine and said, “Her name’s Bessie!” And so they shared their bed from then on with Bessie. That’s one of the funniest hallucinations I’ve come across.

GV: Is it a bit like little children with their ‘imaginary friends’?

ANGELA: Very much so.

GV: So there can be aspects of dementia where the person regresses to a more child-like state?

ANGELA: I think so. The wife of an old friend of ours spent her last months cuddling her teddy bear. They need close, familiar things.

GV: What other kinds of hallucinations affect dementia sufferers?

ANGELA: Physical things. My daughter took a cup of coffee into Brian who said, “I can’t take that cup from you now, I’ve got this sticky stuff all over my hands and fingers.” So she wiped his hands ‘clean’, and he was then able to take the cup. I think he also hallucinated about smells.

GV: Are people with dementia able to continue enjoying things like going out to a meal or the theatre or watching a movie? Or does that pleasure go?

ANGELA: Many of them continue to enjoy those things, but of course, it depends on the extent of their disability and on the person taking care of them. My family often asked me, “Why do you keep on taking Dad out to lunch at the golf club? He’s such a shambling wreck and it’s such an effort!”

I said, “He’s always done it! He loves going there. It’s where his friends are. He likes to think he’s as close to normal as he can be.” 

And that’s very necessary for them. Stimulation keeps them happy, and keeps them … ‘better’.

GV: What are some of the agencies available to help both the dementia patient and the carer?

ANGELA: Everyone who has dementia should have a Needs Assessor.

GV: How do you get one?

ANGELA: You get one after you’ve been in a public hospital, or through your GP. Some people don’t have one, and I say to them, “Ask your G.P. This is help you need.” It can be a roundabout, with everyone dodging the responsibility, but you just have to stamp your foot and insist, “Get on with it, please! I need HELP!”

The Needs Assessor talks with the carer and the dementia patient, sums up how much help the carer needs, and offers suggestions.

GV: You seem to have gathered loads of techniques and insights for lightening the load and making life as rich as it possibly can be for sufferers and their carers. Was that your aim in structuring the book the way you have?

ANGELA: Oh definitely. The main coping strategy is not to fight the dementia symptoms! I think about this such a lot. Even in everyday life, if you’re with someone who’s not letting you be who you really are, you get restive. You’re unhappy. You can get aggressive. 

The aggression in dementia very often comes when the dementia patient has too much expected of them. So, yes, go along with them – live in their reality – don’t correct or challenge their view of things … and life will be a little easier.

GV: You mention how difficult it can be for dementia patients to eat. I suppose the tendency would be to try and keep them in a high-chair with a big bib on?

ANGELA: At home, we kept on sitting at the dining room table for eating, and Brian did wear a large bib … willingly. He also had acres of plastic underneath him – plus he had special plates, special forks and things to eat with. If we went out to eat I’d ring the cafe or restaurant and say we were coming, and warn them: “This person won’t be able to order their own food. Please do that through me.”

However, another woman in my support group had a husband with LBD. We became great friends, and we looked after her husband when she went away for a break – and he ate very tidily and neatly with a knife and fork and made no mess at all. So, like I keep saying, dementia affects different people in different ways and to a different extent.

GV: One of the things you wrote that astounded me was that some people with advancing dementia even forget how to swallow! How on earth does a carer cope with a symptom like that?

ANGELA: Ah, well, that happens with Alzheimer’s. With all the other dementias, you risk dying of other causes – heart attack, or cancer, or pneumonia. But that’s not the case with Alzheimer’s. Sadly, with this type of dementia, your brain eventually stops working. Your body forgets how to digest your food – how to blink – and gradually shuts down. And yes, you even forget how to swallow. Many Alzheimer’s patients die because they choke, and unfortunately, 60% of people with dementia have Alzheimer’s. So it’s not a good outlook.

GV: Did Brian ever forget who you were?

ANGELA: Yes. (Chuckles) I took him out to lunch at the Golf Club and went off to the ladies’ room. I came back to find him sitting in the lounge where I’d left him. I said, “Okay, let’s go in to lunch.” He looked up at me and said, “Um – well thank you, but I’m waiting for my wife!” (More chuckles)

GV: How did you handle that?

ANGELA: I said, “Alright, I’ll leave you then …” And I went away for a minute or so and then came back again. He recognised me the second time.

GV: It’s very common, isn’t it, for dementia patients to forget even their nearest and dearest?

ANGELA: Yes – very common. They often forget who you are. And that can be very hurtful for some visitors.

GV: You mention that some types of dementia result in the person’s face muscles freezing up – so they have a sort of blank look. When friends come to visit they can get the impression that the person with dementia isn’t interested in them.

ANGELA: That’s associated with Parkinson’s Disease – the Parkinsonian side of Lewy Body Dementia. Not all dementias produce that look. And yes, it can be very off-putting, because people think the person with dementia isn’t even slightly interested in them … but they are. This, I think, is what I struggled with when we talked before about laughter. Because I didn’t seem to be getting any feedback from Brian, it was hard to laugh – hard to keep chatting, to stay light-hearted and upbeat.

GV: Tell me about your finding a support group, finally, and sharing with other carers – hearing what they were going through.

ANGELA: I was very lucky in that the Parkinsons’ field officers had a group of six or seven women, meeting regularly, women whose husbands had LBD. We all got on together very well. Others have gone to an Alzheimer’s support group and found themselves in a group of 20. That’s not workable – it’s too big. 

Our group was a local one. We were all in the same boat and that’s the most important thing. We were all much about the same age too. I make a point of telling people when I speak – find a support group! No one supplies you with one. 

Build your own support group if you have to – it’s very important. It keeps you going.

GV: What would your words of encouragement be to people who find themselves having to look after someone as you did?

ANGELA: Just hang in there! You may be caring for someone you don’t like, and you have to do it – but it’s best to just let them sort of take the lead. Just go along with what they want. Live in their reality, don’t argue: “No your hands aren’t sticky” – “No there isn’t another lady in the bed”. Go along with them (within reason) and things will be easier.

Make sure you’ve got lots of help … professional help. Get a good G.P. Above all, get good legal and accounting advice so that you are financially secure. Don’t let the person with dementia have anything to do with the finances.

Anyone who’s an adult should have an enduring power of attorney. For example: one of my friends developed dementia, and her husband looked after her devotedly until he had a stroke and was rushed off to the public hospital. She followed the ambulance in her car (she shouldn’t have been driving) – forgot she’d taken the car, walked home six kilometres and rang her family. That was when they finally discovered how immensely disabled she was, and they had to get total care for her. But they had no access whatsoever to her money – because she had no enduring power of attorney. So everywhere I talk I ask, “Who hasn’t got an enduring power of attorney? Get one immediately.” Everyone needs one.

If you can’t afford professional assistance, go to the Citizen’s Advice Bureau. Go to your Needs Assessor. Throw yourself on other people’s mercy. Ask for help – and you’ll be amazed at what’s available.