Mari - Interview 45

Age at interview: 60

Brief Outline: Mari describes what it's like seeing and, herself, dealing with the symptoms of her husband's Parkinson's Disease.

Background: Widow, 2 children.

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When Mari first noticed symptoms in her husband which were later diagnosed as being part of his early onset Parkinson’s she accepted the suggestion that they could be a reaction to the stress of a their daughter’s serious car accident. Even after the diagnosis was confirmed she feels they paid less attention to it than to their daughter’s problems.

 

As the Parkinson’s became more obvious she sometimes resented the fact that her husband seemed to be able put on a good face for visitors while the family saw the mask-like face characteristic of his form of the disease. She had to learn to accept that his apparent lack of responsiveness to her was not deliberately aimed at her. She learnt to appreciate that putting on a good face was exhausting and he could only keep it up for a short time. She sometimes wished she could be with him when he visited his doctor as on these occasions he could also make an effort and fail to reveal the true extent of his symptoms. She wonders if his doctor’s knowing this would have in any way have altered the way his medication was managed.

 

She sometimes found being more aware of her husband’s symptoms than he was uncomfortable. For instance she had a problem convincing her husband that his driving was now affected by his Parkinson’s. But once he was convinced he was able to correct the problem and drive more safely.

 

Knowing when and how much to help her husband was an issue. She often felt that she should help as little as possible, to encourage him to maintain all his skills, but set against this was his irritation that things took him so long to do, and his impatience about the time wasted.

 

Her husband was always very positive, and determined to overcome the obstacles imposed by his illness. He was prepared to do research into the issues which currently affected him but was less willing to look into the problems that might arise in the future.

 

Mari’s husband died in 2005 from an unrelated heart attack.

Mari described the problems for the family who have to live with the Parkinson's disease 'mask'.

The mask is really hard to live with. And for Humphrey it varied as I say, a lot of the time it wasn’t there because he’s a performer but I think everybody performs to some extent. But the mask even when it was there varied. Sometimes it was just impassive, just not making smiley movements. Sometimes it looked as though it was quite a sort of scary, eyes poppy sort of mask. No rhyme or reason really, it might have been tiredness, it might have been state of the day, goodness knows but that was that was not a nice face, it wasn’t just a mask. And then sometimes if you complained about it he could give you an immediate grin just to prove that he could because, you know, Parkinson’s you can do something that you’re only thinking about once. You can walk when you’re thinking about marching or, you know, clicking your fingers or something but then it all wears off. So you’d get a grin just, you know, stop complaining and then it’d go back. And I think that’s a really hard thing to do without all those facial signals or do without them quite a lot of the time.

Mari appreciated the danger of regarding the stress of their daughter's accident as in any way responsible for his Parkinson's disease.

The interesting thing about the fact that it came near my daughter’s accident was that that actually produced what I think happens with other Parkinson’s patients which is that it’s not that uncommon for there to be a life event which seems to be very close and possibly to cause or get associated with the onset of Parkinson’s, particularly for younger onset people.

 

And I think one of the things we had to cope with was finding out about that. Finding out whether that was true and when I read, I remember reading all this stuff about well, actually Parkinson’s can be latent for ten years until you see the first symptom, and I think his consultant said that firmly. And then you read about what actually might be happening that, you know, you’d been magnificently balancing your neurotransmitters and then something happens which doesn’t just cause the disease, but means that you can’t do the balancing act anymore. And than kind of made sense but the important thing was for us as a family to really believe that it wasn’t daughter’s accident which had caused father’s intractable illness.

 

And that was quite tricky because sometimes people, my other daughter might say, you know, “And and everything was all right until.” Or something that sounded like that and it was really important to deal with that and not make that part of the problem.

Humphrey was not given levodopa at first. When he was, Mari noticed a surprising improvement in his symptoms.

I think because he got it so young, and because he himself knew that the benefit of keeping as slowly as possible your progress through that ladder of drugs. I think he left it quite a long time in each case before he moved on. And so we did see quite a lot of loss in each stage and then the drug would come in and make you quite perky for a bit but then, of course, you lose the effects of the drug. And actually I think one of the things about being finally put on to dopamine was it almost made him too perky. I think it would have been sensible to warn him not to stretch muscles and tendons that he hadn’t been using properly for a long time. And it, you know, he had some trouble with the leg because he’d said, “Oh whoopee. I can, you know, run for trains again.” Or something stupid but that’s the sort of person he was. So I think that that is one of one of the issues that we half understood. It’s easier to understand it with hindsight.

Mari saw how frustrating Humphrey found his clumsiness but found it hard to decide how much help to offer.

His way of dealing with things wherever possible was to laugh at them, to make entertainment out of them which is why he wrote songs about them. But he was also frustrated and I think as carer you don’t know and you can’t get right the whole time when to whiz in and make something happen faster because that’s nice. Or to say, “No, I am not at your beck and call. You can do that. There is no deadline you can do it now.” And inevitably you regret not having done some of the things that would have made more time available for work or just enjoying life instead of leaving somebody taking too long to dress. On the other hand it seemed right to say, “Well, you can dress yourself unless you specifically say, ‘I can’t do this.’ Do as much as you can yourself and then I’ll help you.”

Mari describes how Humphrey's ability to improve in the face of a social challenge was difficult for his family to accept.

I think that’s particularly true the difference as as family there’s a big difference you perceive between how the person with Parkinson’s is with you on a day, daily, twenty four hour a day basis and how they are with new faces. And I think that applies to the mask and it applies to lots of other things as well. But there’s something really horrible when you’ve had a large dose of the mask, somebody not smiling at you. Not warming to things you’ve said, jokes you’ve made, just sort of getting you’re getting that tired face. A new face walks in through the door and immediately it gets a warm smiling greeting.

 

And the hand that is shaking when pouring you a cup of tea is dead steady when pouring the visitor a glass of wine. And it’s really hard to feel that that’s not an insult to you, the family. And I think we had a lot of that and sometimes were able to say, “Well, that’s how it is.” And sometimes were impatient, showed that we were insulted.

Mari felt that at each stage she had to decide whether or not to offer to help.

I can talk a bit more about helping. One of the things about Parkinson’s because it’s variable, because you keep moving from stage to stage is that it’s really difficult for carers and family to get the hang of how much to offer help. On the one hand you’re trying to allow somebody to be independent, on the other hand they want to do something faster. There are different answers at different times. Eating, particularly, is tricky. You don’t want to be seen to be chopping up somebody’s food for them. On the other hand Humphrey found that mealtimes could be a nightmare particularly in other people’s houses because he could choose to have items of food which were easy to spear on a fork or put in a spoon but cutting up food could be difficult. So we could chop it up for everybody but if he went to somebody else’s house and was presented with a large chunk of meat that he couldn’t deal with was he to ask his next door neighbour, what, should I go and do it for him? Again, hard to get right answers and he’d quite often, you know, in a buffet or something choose the thing that he could eat other than the thing that he fancied. 

 

Dressing was another one. He wrote a song called, “Putting on your socks.” Because putting on socks was really, really hard. Again, I think my daughter found a gadget called a Soxon which helps you put on socks. But the point was that it was something he could do. But the whole palaver of dressing including putting on socks in the morning took so much longer than he wanted to allow it. It was not an important enough activity in the day to take that much time.

It took time for Mari to learn not to misinterpret Humphrey's lack of expression or 'mask'.

No, because the mask didn’t look eventually when we got to the hang of the mask you could tell that it wasn’t a look of somebody feeling gloomy. It was.. the feature of the mask is it’s non-responsiveness now depression can produce that sort of look as well but the feature of the mask is that nothing much moves. It’s not even the ability to produce a really gloomy face so I think it’s different. Sometimes it sometimes you could mix it up but I think that’s what so depressing about the mask as the watcher of it is that it’s not responsive and you your first instinct is to say, “Am I really that boring?” 

Mari had to learn how to be diplomatic in her position as observer of the changes in Humphrey's driving.

It’s something that I’ve heard other people notice and again, it was something that I noticed first and that that’s something that I think is a tricky thing for carers. When you notice something which is actually potentially dangerous and the patient doesn’t believe you and that did happen with driving.

Once he had realised that we were telling the truth and it wasn’t just being bloody minded about husband driving he was able to correct it. And certainly he went on driving safely for much longer than I would have believed when I first started noticing it. And when he when he didn’t believe it and thought there was nothing the matter he was dangerous so it was quite tricky to get him to the point where yet another symptom, he didn’t want any more symptoms, had raised its ugly head. And was yet another thing to be conscious of when, of course, it’s nice being unconscious. 

Mari suspected that Humphrey couldn't resist putting on a show for his doctor and that as a carer perhaps she should have told him the truth.

I think I used to feel that there was a little extra point about the family seeing things that the patient doesn’t and that’s related to the being able to rise to the occasion, rise to a good putting on a good show for people you see less often. That’s quite important when you’re going to your doctor.  Looking back on it now I think I was one of the sort of people who doesn’t believe in going to a doctor with spouse or older child or whatever. 

 

Be independent. I think looking back on it actually I had information that the doctor might not have seen or that certainly that my husband wouldn’t have said because there’s an element of playing to the audience of the doctor as well. And I think that family carers are able to see things with Parkinson’s. See progress see, because there’s so much variation simply during the course the course of a day, see things which might otherwise get lost.  I think, looking back on it, I think it would have been sensible to have gone with my husband to those appointments though obviously you crowd somebody if you’re there the whole time so it’s a tricky one.