Carers of people with dementia
Getting a driver's license marks a significant moment in any person's life, bringing with it opportunities for independence, freedom and discovery previously unavailable. The loss of that license is something that has to happen sooner or later to people with dementia and the result can be devastating to both carer and sufferer.
Describes the meaning for her and her husband of his no longer being able to drive.
What did it mean? Oh everything, absolutely everything, he enjoyed driving, I don't. I really don't. I get in a car and it's a means of getting from A to B. He actively enjoyed driving. He has driven since he was 18, its independence, its everything, we live as I say four miles from anywhere. And you know if he's gardening and he needs some more potting compost, if he's mowing the lawn and he needs more petrol.
Anything, he's got to come and ask me which is jolly difficult, when you've never had to do that in your life. Its all about freedom of movement, freedom of what you do, when you do it and not having to fit in with the fact that if I don't do it now, I'll be going in to shop later, I'll do it then. It, its just that personal freedom, and I think its terribly important for a man to be able to drive. And to have it taken away is devastating.
In some cases, the driver shows some insight into the fact that their driving is becoming unreliable and decides to stop, although maybe not until after a series of mishaps. A man in his forties who was developing frontal lobe dementia (sometimes called Pick's Disease) began to lose his sense of direction and recognised that it was no longer safe for him to drive, much to his wife's relief. For another man who had Pick's disease his driving became a symptom of his condition and again it was almost a relief when he was no longer able to drive although in this case it came about after he had been involved in an accident.
There were several crises before her mother agreed to stop driving.
She drove her car endlessly and she would drive up here non-stop from Bristol, having gone round Swindon about three times and sometimes around the M25. And once when she left here she didn't get home for two days because she literally went round south London and up to Swindon and around Shipham, but she just loved driving her car. But she was the one who actually stopped to our great amazement. No, no sorry I must digress. So she had her car and there's another story about how she got lost and, but when she came back from this episode when she got lost - no, sorry, let me get it right - before she went off, the car was stolen.
She rang me up one day and she said 'The car's been stolen.' And I couldn't stop, inside myself I was really rejoicing, I thought thank goodness, I rang my sister in great excitement and said 'The car's been stolen isn't this wonderful.' You know we couldn't have asked for better.
And, so the car had been stolen and we were thrilled but we knew she wouldn't be able to manage the documentation for applying for, her - what's the word I'm looking for - for her, the insurance. And so while she was away we established, we found the insurance company and we sent, we sent what details we could, it took endless phone calls because we were doing this by proxy to Scotland and they agreed to send us the money because we said if they send, if she was sent the cheque it would just go into the bank account and get lost in the way everything else got lost. So we said would you send us the cheque.
So they were, they were very accommodating and they got, they got us the cheque sent, the cheque sent to us. The very day we got this transaction back she rang me and she said 'I've found the car.' I though oh no. The police had found the car in a nearby street where of course she'd just left it and forgotten about it. The tax had run out that was why somebody had at last notified the police and, so that they realised then it was an abandoned car and notified the police. So the police found it, found the owner, found that she was the owner.
Mum as I say was very plausible, they gave it back to her. It had no tax, no insurance and it didn't belong to her anymore because the insurance company had actually paid up, but she was thrilled and off she drove and continued driving. And, she did actually, because she had a lot of rational sides to her, she did actually take it to the garage to see that it, to see if it was road-worthy and somehow or other they got her, they did get her some tax. They did get her a tax, now did they get, they must have got her some insurance as well for that, but it still didn't actually belong to her.
But anyway for a long time - I say 'long time', a few weeks - she drove it around without tax, insurance or, or even ownership but somehow it did happen that she got, she got the tax and insurance and we had to pay back I think the money. Yes, I can't remember how we did that but we paid it, we paid back the money in the end to the insurance company so it was her car eventually.
And then one day, she came back from London and she realised that she was just too dizzy and too confused, she didn't even know where her house was. And she just, she, she said 'I don't think I'm safe to drive,' and we were just amazed with her insight and she also did say 'I'm not, I'm going to sell the car.'
So we got over that episode, we got over that side of things, amazingly with greater ease than we ever thought because she adored her car and the last thing she was ever going to give up was the liberty of driving. And, but she just did that spontaneously
Her husband who had frontal lobe dementia developed visual and spatial problems and recognised...
Especially for someone with visual and spatial problems, I began to get quite anxious when I was in the car with [my husband] because he would do things like signal left and turn right, or I'd be map reading and I'd say 'Take the second exit on the roundabout' and he'd take the fourth or fifth, or something, because he was reading the sign the wrong way round. I used to get very worried when [my husband] was out in the car alone, especially if he was overdue, very worried indeed. [My husband] had fortunately been a very safe driver so, hopefully some things were second nature to him. But certainly when he came in and he said he'd driven the wrong way down the M11, that really did for me, he made light of it by saying 'They were altering the junction…' and that was probably the reason, they were altering the junction and there were road works around the place and he completely lost direction. To have driven the wrong way, the wrong way down the motorway itself! The police stopped him and turned him round and sent him back, and one does wonder if some of the erratic driving that one sees isn't due to people in the early stages of dementia.
But he was very good at giving his keys up. The day he got lost in [town] in familiar surroundings and he was away for three hours on what should have been a forty minute - twenty minutes there, change of tyres to the car, twenty minutes back' he was away for over three hours. He'd been all over the place and couldn't find his way home and he came back absolutely ashen-faced, in a cold sweat and he threw his keys on the table, he said 'Don't ever let me drive again.' And I breathed a huge sigh of relief. But what I would have done had he insisted on driving I really don't know.
Her partner continued to drive until he had an accident.
Driving was something that was a great worry to me, it was one of these great ethical dilemmas I found myself in, because his whole life, over the, a year ago his whole life was driving. He'd get up in the morning, he'd be out at 7 o'clock, he'd be back again, he'd be out again, he'd be back again, out again, in and out. In the middle of the night he'd get up, get dressed and go out. And I wouldn't know where he'd been.
I used to hide his keys when he was driving - eventually - so that he, he would wander round the house looking for his keys but not able to articulate what he was looking for, so he would say 'Where are?' and then stop and look puzzled and go wandering off again. So, that was a problem solved - partly but then he had a little bump just before Christmas last year, where he went into the back of another woman at a roundabout very slightly, but he drove off. But before he drove off a Tesco lorry went into the back of his car. And I came home and found his car on the drive with the back smashed in and of course he couldn't tell me what had happened.
Fortunately he wasn't injured and I thought 'Well if the police were involved we'll soon know about it.' Well they weren't until a week or so later when I came home and he said 'The cops have been'. I said 'Why?' 'I don't know.' So I managed to find out who it was by dint of phoning the police stations around, not just one station but about three or four stations and spoke to the policeman who'd been and he came round to see me and he sat there and [my partner] sat on the settee over there, and the policeman said 'I feel most peculiar talking to you, and not talking to him.' He said 'When I came to interview him, about the accident, I thought he was taking the Mickey and I bring, brought my colleague in from the police car and said, “Will you listen to this gentleman and see whether you agree that he's not fit to be interviewed?”'
And they did, they both agreed. And what had happened was um, they'd gone to the DVLA and got his, address obviously and, this is why they came to interview him. So he said at the end of the interview 'Look, I will have to inform the DVLA about this.' So I said 'Well I was going to do it after Christmas.'
I, well, it was one of the most difficult decisions I had to make, this business about driving the car because I knew he shouldn't be driving, because although his spatial awareness faculties are not, haven't been, damaged at all, its his decision-making abilities that have gone and he would, it would be dangerous, basically.
So really the whole situation took it out of my hands and I was heartily glad when the DVLA, well I, he stopped driving from the accident because his car was a write-off, fortunately, and he never asked to drive after that. So that was that. The DVLA finally sent a letter saying you know 'We've, we've been in touch with your doctors and your psychiatrists and sorry, but your driving license, needs to go.' So it went. It's never been a problem except it has made him completely reliable on, reliant on me now and that's one of my biggest problems.
Since he stopped driving it hasn't been a problem at all, he hasn't wanted to drive, he's never got in the car on the driver's side, made a fuss about it, asked me if he could drive, its as if its gone completely from his memory.
Where the driver doesn't have such insight into the their worsening driving abilities, the carer is faced with a terrible decision. How to put an end to any further driving. One man was very unhappy about losing the right to drive and a consultant tried to give his wife the responsibility for making a decision, even before the diagnosis of Pick's disease had been confirmed. She described the pressure this put on their relationship, she was relieved when an independent assessment by the DVLA showed her husband how real the problem was.
Describes the damaging effect on their relationship when she seemed to be responsible for...
Well that threw up the first problem, which was, if it may not be that then why, having been told by two different doctors that I shouldn't drive, my husband's concern was 'Why should I not be allowed to drive?'
He put this to the consultant and this was the first real problem that was thrown up. The consultant said 'Would you mind leaving the room while I discuss this with your wife?' which my husband did. The consultant discussed it with me, called my husband back into the room and said 'Well, as a result of talking to your wife, I must now recommend that you don't drive,' this having been the third doctor to recommend that.
Now that threw the onus wholly on to me and my husband perceived me as the, the wicked wife who had persuaded everybody that he was unfit to drive, and that I think did more harm to our marriage than anything has ever done before or since. And I don't think that man had any possible concept of what he was doing to us as a married couple, by not accepting the responsibility of having to make a decision as a professional and stick by it. That the whole onus was thrown on to me and it was devastating. It harmed us for months and months and months. So that really could have been avoided.
Now an example of this was the driving. My husband and I were at each other's throats. We were destroying each other with this awful driving issue. Now my husband said to this new consultant that we were under, 'I do not think that I am unfit to drive.' So this consultant made it very, very clear that in his opinion my husband wasn't fit to drive. And my husband said 'Well I don't accept that'. So he, I maintain in an extremely courteous and compassionate fashion, accepted my husband's right to say that and he said 'I fully understand your feelings, I can, imagine how I would feel in your position. This must be addressed properly, I stand wholly by my medical decision and I would stick by that in a court of law. However, I hear what you're saying, you have a perfect right to be heard'. And he said 'I feel the way forward now, this is obviously causing enormous distress not only to you but to your wife as well, we must arrange for you to be tested properly by an independent assessor'.
And he gave us the particulars and the wherewithal about how to apply for an assessment at [the] Assessment Centre, where you go for the entire day, you arrive at half past eight I think it was and you're tested through till nine, they, sorry, through till half past four. They test stroke patients, head injuries, people who may be have been injured but could recover enough, it is a really objective, thoroughly proper assessment and they do it a number of different ways.
And at the end of the day my husband had failed consistently from the beginning of the day to the end. On one of the tests it was on a computer simulator and they could produce computer feed out paper, and as a scientist that meant something to him. He'd got evidence, which is what he wanted, and he was entirely satisfied. As a matter of fact he was inappropriately satisfied but that is a definite feature of Pick's disease. He almost patted them on the back and told them they'd done a jolly good job! But that is typical of the disease. But we as a couple were released from the agony of the fact that it was my fault. Now any doctor could have suggested that as a way forward. That would have saved us, oh a year, if not more, of agony.
I, was appalled when [my husband] was sent out of the room, the way it was indicated quite clearly that according to what I said, a decision would be made and that was precisely what did happen. But I, you see I could have
Dementia is not so common that all GPs have previous experience of dealing with the problem of patients who need to stop driving. One carer describes how she succeeded with the help of a Community Psychiatric Nurse and her GP to get her mother tested by the DVLA. One carer describes how he was actually relieved that his partner got into trouble with the law after going through a red light as this relieved him of the responsibility for stopping him from doing one of the few things he liked to do and could still do.
Explains the strategy for getting her mother tested by the DVLA.
Then we had to get her to stop driving and the GP, I planned it fairly carefully with the Psychiatric Nurse and the GP and he'd never done that before, writing to Swansea, so he actually took advice from the, what do you call it?
Well he took advice from the DVLA but the Medical Defence Union because he was really worried about doing it, which meant writing a letter to them to say that she wasn't fit to drive because the nurse had asked him and I'd asked him to go and talk to her about not driving anymore. She was absolutely adamant that there was nothing the matter with her driving, she'd never had, apart from that one prang, she'd never had an accident and why shouldn't she drive? So he wrote the letter. I planned this really carefully, so I said 'Right, you write the letters so that it arrives about the day I come' because I knew that would be the beginning of the end in terms of her, I knew that when she lost her driving licence that she'd lose her fight to kind of carry on, which it was really.
She was outraged when she got the letter, she was ranting and raving and I was there because I'd planned it to be like that, of course I got the blame for it, it was all my fault. But I wanted to support, my idea was that I would be there to support her through it. The Nurse was wonderful he phoned me up and said 'How's it going?' I said 'Absolutely awful.' He dropped everything and came and he sat with me while we coped with the rage. So that was horrendous, and that was about two years before she went into care.
He was relieved when his partner's license was taken away by the court.
There were a number of very difficult decisions, very difficult decisions. Early on one of the most difficult would have been, stopping [him] from driving. Something he loved to do but he really wasn't very safe. Well he had to be told to go left round a roundabout, that sort of thing! So he wasn't, I know it's terrible. I know I understand, it's also very, very difficult to take away the one thing that he liked to do and could still do.
But in fact, the decision was taken away, that decision was taken away when, when he was stopped by a policeman. He became totally lost, somewhere where that he would have known. He became totally lost and disorientated and, when a policeman asked him what, he went over a red light and, when, when the policeman asked him what colour light he went through he responded 'Blue'!
A court case ensued! And, I spoke on his behalf in court and, although it could have been, I understand what the serious consequences could have been involved but life wasn't easy anyway and, that decision was taken from us and the court were very kind, I thought.
So at least I could say to him, I could lie to him that his license would be returned to him, but 'You remember you did something wrong?' and he would accept that. Whereas I couldn't tell him that he couldn't drive and just, you know and take the keys away, that would be too, too awful.
More often the carer used more surreptitious means to stop driving, relying on the knowledge that the dementia sufferer might forget about driving. They might hide the keys or even sell the car. But this may not be possible where someone in the early stages of dementia is living independently. A daughter had 'a nightmare' with her mother's driving. She persuaded a garage to hang onto her mother's car following a minor accident, only to have their plans ruined by the insurance company, who gave the game away.
Colluded with her mother's garage to try to keep her from driving her car.
Actually, a lot of people could have done it, it wasn't particularly because she wasn't paying due care and attention but she damaged the car quite badly. When I took it to the garage who constantly did, who did all her things for her, it was a small…they said 'It's a write-off!' The next day he said 'Could you come and chat to me?' He said 'I want that car to be a write-off, your mother shouldn't be driving.' I said 'I know she shouldn't but I don't know how to stop her. She won't take advice.' because she wouldn't. So I said 'Well let's just prevaricate.'
I had to get the insurance people to come and do an assessment and they of course said it was amendable. So it was mended but he took a long time to repair that car and we were both trying to prevaricate on that as long as possible but my mother independently would be phoning him up and saying 'When's the car…why have you not finished the car, where's the car, where's the car?' And it would go on, once she got a bee in her bonnet it would go on and on and on, so she might be phoning him five times a day sometimes to say 'Where's the car?'
In the end she insisted that he finish the car and he phoned me up and said 'I'm sorry, I'll have to finish the car, there's nothing I can do about it, I'm not happy about it.'
There tends to be a time in the course of dementia when neither the diagnosis nor the need to give up driving are totally clear cut. One son felt that had he realised how bad it had become he might have put a stop to his mother's driving earlier on.
Balancing a relative's wish to drive against the possibility of danger to the public.
Yes it's a, it's difficult I think your automatic inclination is always to take into account the individual good of your relative first and foremost so it can be difficult to see when there's a wider issue involved. But I didn't have a huge amount of difficulty making the decision not to let mum drive because I, in fact what, what probably I should be saying is that I was remiss in not realising there was a problem sooner and therefore she had been driving a bit in the previous year when she was clearly not well and that was dangerous. So I don't think I did that too soon.
I'm not sure if there are equivalent. I think if somebody was still at work and was in a position to put other people at risk that would be an issue. I think at the stage my mother got to it wouldn't have been an option, she wouldn't have been able to work. I would in general err on the side of the public good at that stage I think.
In another case where four sisters shared concern for their insistently independent mother, the carer we interviewed had not been convinced that it was wrong for her mother to continue driving and this caused bitter arguments within the family.
Concern for mother's wish to drive while admitting the risk of her causing an accident.
Now I, certainly one of my sisters felt her driving was risky and I didn't. And I felt it was a bitter blow for her to lose that car but sure enough she did because the doctor wouldn't sign the thing saying she could keep it. So I went and saw the doctor and persuaded him, the local doctor, to sign a form for the police saying that she could drive, you know, etc, but he wouldn't 'cos he said 'You'll never forgive yourself if she's in an accident'.
My feelings were that it would have such a bad effect on her not having a car that, you know, if she had an accident, well obviously that would be terrible, but in a sense it was the quality of her life that I wanted to keep up.
So there were heated debates about that with my sisters and one of my sisters was more keen that she did lose the car and then I had the very painful job, and this caused a lot of friction between me and my three sisters, I volunteered to be the one to go and take the keys off her, the car keys.
And that I have to say Clive was the most horrible time I've had. I was crying before I had to do it because it felt like, just taking someone's freedom away. You know, someone who was always so independent and it was horrible, it's making me feel tearful now just thinking about it. And of course you know, then my other sister turned up with a whole weekend of circular questions 'cos her memory was going then, this was about two years ago, about why and how unfair and outrageous and she went to a solicitor and what an ageist society we live in and blah, blah, blah, blah, blah. And we had to hide the keys. So that was grim and I have to say for me that makes me feel a horrible thing, it was horrible to do that to an old lady and to your mother, yeah.
That was my worst point. And I don't think anything will be as bad again. And so much so that I felt so angry with my sisters afterwards I did write them a letter calling them cowards and everything else. 'Cos one of them was meant to come with me and she didn't and I was very annoyed.
Occasionally, giving up the car is not seen as a tragedy and public transport provides as satisfactory alternative. But for many, no longer being free to drive is seen as the beginning of the end.
Feels that giving up driving marked the start of her mother's decline into dementia.
But losing the car was incredibly traumatic for her and it was what she'd always said was that you know, 'you have independence if you've got a car' and it was…having it forcibly taken away from her and not giving it up was pretty dire really.
I knew that when her driving licence was taken away from her that that would be, that was the beginning of the end for her so it was quite traumatic, you know, that was definitely a big thing because of what she felt about driving. Because it summed everything up for her, it was independence, freedom, being in control of herself. I think it was all put into driving.
Last reviewed February 2020.
Last updated March 2015.