Caring, care and carers

Parkinson’s disease is very variable and may progress very slowly. When first diagnosed most people worry about future incapacity and who will be able to care for them, though many people have Parkinson’s for a long time without needing high levels of care. And they may never need the highest level. But the image of increasing dependency disturbs both the person who has received the diagnosis and others who realise that they may at some time have to become carers. In time patients and carers can come to accept the unpredictability of Parkinson’s and ‘live for the day’ but they still remember their initial feelings.

Partners of people in whom Parkinson’s disease was diagnosed when they were younger, now found themselves in a caring role while still relatively young. Plans they had made for the future once their children had grown up had now changed. Some carers whose partner or spouse was of retirement age faced a different retirement from the one they had expected.

Anna felt she could no longer look forward to the freedom she had anticipated when their…

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I mean I think when you’re both busy working and you have children and things like that, you assume that there might be a time a bit further down the line when you’ll get a chance to reconnect and do a lot of the things that you both enjoy doing together.And we’re both quite active people and I had assumed that we would be able to, you know, go off on lovely walking holidays in northern Spain or those kinds of things which have been difficult to do whilst, whilst having kids and wanting to do things that all of us would enjoy rather than just the two of us would enjoy.So I felt quite a long period of feeling very thrown by feeling that all of that had been taken away.And one of the ways that I’d dealt with some of the stresses of the uncertainty around the, the area of work that I’m in, you operate within a, a reasonable amount of certainty over a period of time, and then funding gets reviewed and everything is very uncertain for, for a while.And the way that I’d always dealt with that is by thinking,If it all went belly up at, the next time funding was reviewed, then I’dwrite the novel I’d always been writing, wanting to writeAnd of course in amongst that is the assumption that there is somefinancial security sort of there in order for you to be able to do those kinds of things.

So there’s all kinds of visions of the future that you don’t even realise you’re holding in your head, which, I suddenly became very conscious of feeling that actually I had, I’d built up quite strong impressions of what I would like to happen in the future and the luxuries that I was looking forward to.I don’t mean luxuries in any kind of material sense, but luxuries in the terms of the, just the things that you wanted to do together and share together.And I felt really thrown and isolated about being, as I felt, sort of propelled towards a caring role, which I had thought might be part of my life perhaps fifteen or twenty or twenty-five years down the line, and the sort of things that I’d kind of anticipated might affect my relationship with my parents in the very immediate term but not with my partner.

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However because it is not the carer who will suffer the disease carers find it difficult to get help and understanding of their feelings. Anna was wary of discussing Rafa’s Parkinson’s behind his back and yet was unwilling to share with him some of her concerns in case this made him feel worse than he felt already. Fiona worried about the future and how things would work out. Her husband did not want to tell anyone at first about his diagnosis, and not being able to discuss her worries with others made her feel very isolated.

Anna would have liked to be able to discuss her concerns but was reticent about approaching their GP

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So I spent a lot of time kind of worrying about, What would he be like, what would he be like if he just couldn’t do thingsI meant really as far as his whole mental health was concerned as well as what would it be like to actually live with somebody.And actually it would have helped me hugely during that time to feel like I could just have gone and had, that, you know, somebody had legitimised or opened the door to saying, Do you want to just come in and talk about, about how you feel about it or what you’re worrying about or, or anythingSo that would have been hugely helpful to me.And even just knowing then that I could have gone back,and maybe sort of asked for, I, I don’t think I needed a huge amount of help, but I do think it would have made a huge difference if I could just have talked to somebody at that time.

I think like a lot of people I have enough problems legitimising going to the GP even when you feel like there might be something the matter.So I think most people find it difficult to approach their GP about something, you know, in a sense I would see them as maybe thinking of it as being very trivial, that they’ve got people who are already affected by things, not people worrying about what might happen in the future.So I, I didn’t feel I could make an appointment and, and go and take up a Gps time to, to talk over sort of being worried about those things.

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The carer, especially in the early days when they have no actual caring duties, is never- the less affected by the changes occurring in the person they live with.

It took time for Mari to learn not to misinterpret Humphreys lack of expression or mask.

Age at interview 60

Gender Female

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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

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Stephen’s wife left him soon after he was diagnosed but most spouses or partners stayed and struggled to get their role right. Long before there are serious physical needs people had to learn the difficult balance between the desire to help against encouraging independence. They may have to suppress any fears they have about the future in an attempt to keep their partner from descending into depression.

Fiona found it difficult to know at first just how much to help her husband.

Age at interview 46

Gender Female

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I try to always say to my husband if he would like me to help him with certain things.I try not to jump in when he’s struggling to do something and do it for him and my daughter’s very good at that because, I realised I was doing that initially and, and she just said to me one day, you know, she said, Mum you should really let Dad have a tryShe said, I think he’d like to have a go at doing something

So it’s achieving a balance really but at the moment when he gets up in the morning he would, he would struggle to fasten the buttons on his shirts, so I would help, I’ve had to help him with that so I would just, you know, so, Would you like me to do thatSo I’d do the buttons and similarly with his tie. He can’t put his tie on so he tends to take it off, part done and then puts it on and I help him with his collar. Most things he can manage fine himself. Funny this morning I asked him if he would carry two cups and he said, I can only manage one He’s finding it more difficult to do things and he’s always been a very practical person, he’s always done lots of jobs round the house. But in a way my son’s starting to sort of say, Well I can do that with you Dad And, so we’ll all work together really. But, probably fastening his shirt, sometimes helping him brush his hair sometimes or, occasionally I’ll do his hair for him just to make sure you, because he feels he’s not able to do it properly things like that.

At night when he’s getting undressed, sometimes I’ll say, Would you like me to help But it just takes him a long time at the moment because he does feel so stiff.Things like, sometimes I’ll put his socks on for him because it’s difficult for him to do things like that and he’s bought some slip-on shoes so he doesn’t have to worry about doing laces.

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Rex described the way his wife would help him to snap out of feeling sorry for himself.

Age at interview 70

Gender Male

Age at diagnosis 63

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I think my basic reaction is that I am going to fight this as long as possible, as hard as possible, and keep going for as long as possible. And I get periods when I feel sorry for myself and I get depressed but then I have got to snap out of it. My wife’s very good at that. Snapping me out of it. And I say, I keep as active as possible, in that we have got a large garden here, we travel as much as we can as well, and as much as we can afford. And keeping active I think is one of the essentials. Keep doing it for as long as possible. Or as my wife would say, Live for the da.

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Bob did not at first realise the importance of talking to his wife about his fear that he might…

Age at interview 55

Gender Male

Age at diagnosis 51

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I think when it comes down to it, a very important thing is the way that you deal with these situations with your partner. Because I think a man or a woman has to deal with different situations in life.I can only obviously talk from a man’s point of view. But I think possibly it might be slightly male chauvinistic to say this as well, but a man, a family man, sees himself as the strong person, the strong person in the family and when that is threatened by something like this, may be in your own mind you think Well what if I can’t do this and I can’t do that? What if my wife has to do things like help me in the bathroom and stuff like thatit’s just things you’ve never thought of before and these things come to you. And I just didn’t deal with any of these things.I just let them wallow in the back.

But when I was poorly a year ago, everything came out. A whole, everything came out. I laid everything on the table and I said a lot more than I probably meant to say. But it helped so much. And all I can say is to people you don’t have to go through that experience. But it will help you a lot if you do address situations that are in your head, and to talk to your partner or to your parents. And if, if you cry and if you get upset it doesn’t really matter. It just needs to be done and, and then you’ll realise from what they say that what I’m saying is true. That it doesn’t make any difference. They don’t see you any differently. Perhaps only you see yourself differently.

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Mari did not want to interfere or seem bossy but all the time she was having to weigh up just how much she did for Humphrey and how much to leave him to do himself. While Anna and Rafa usually saw his consultant together, Mari left Humphrey to go on his own. Reflecting on that now she thinks that if he wasn’t owning up to his doctor about all the problems he was having she could have contributed what she’d observed, and that might possibly have made a small difference to his treatment. Now, after Humphrey’s death, she wonders if by intervening she could have affected his drug regimen in a way that would have improved the control of his symptoms.

Mari suspected that Humphrey couldnt resist putting on a show for his doctor and that as a carer…

Age at interview 60

Gender Female

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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.

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Mari had to learn how to be diplomatic in her position as observer of the changes in Humphreys…

Age at interview 60

Gender Female

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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.

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Of course many carers did help with such things as dressing, cutting up food, washing and driving. While they wanted to be the ones to help their partners, it affected other aspects of their lives.

Balancing helping her husband with looking after their children and working full time was hard at…

Age at interview 46

Gender Female

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There’s a lot of help and support out there and [my husband’s] you know, determined to, to get through this. We’ve got a very good family and friends. I do feel guilty sometimes that if I don’t have the patience, sometimes if, you know, with, my husband’s struggling with something, I’d say nine times out of ten that I have got the patience there but sometimes, I’m working full time I get tired. But, you know, if ever that happens and it’s not very often we always, you know, it’s not a problem, it’s something that we get through together and I think he understands it’s not easy for me sometimes.

And I suppose sometimes as well with the children I think, you know, I try not to put any burden onto them but sometimes I want to say, Come on, you know, we need to pull together and do this, you know, get through this for Dad as a familyBut then by the same token they’re still children, and they’ve got, you know, demands from school and they’ve got, they’re going through difficult things as well themselves. So sometimes it’s hard, you know, as a family to get through sometimes.

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Brian relied on his wife to set up the pump for delivery of his apomorphine. Fred felt that the burden he put on his wife was excessive and that had they not been able to pay for a carer to come in during the day she would no longer be able to have any life of her own. As it was, he was concerned that when they travelled together she could barely manage the problem of getting him through airports and onto planes.

Fred had seen people overwhelmed by their role as carer and was determined not to let this happen…

Age at interview 70

Gender Male

Age at diagnosis 65

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Well, the council came round and assessed my needs and provided rails on the stairs and raised the height of the bed and the furniture and looked disapprovingly, as they all do, at the rugs on the floor, because they’re worried about tripping.And generally we’ve got a private occupational therapist, who is advising us on things like electric wheelchairs and other specialised equipment we might need.But I’m moving my study, we are moving my study from the top floor to the ground floor to avoid me having to climb the stairs.But I’ve got great help at home with a Brazilian lady, whos around most of the time. But my wife is very keen to increase the number of hours of the carers.

Because without the carers helping out, she would have no life of her own. She’s enormously stressed, my wife, and therefore needs respite. I’ve seen this with my sister-law married to my half-brother, fifteen years older he would be 85 and she can really take even with the carers, so much of him before she goes dog mad with stress. So it’s important to bear in mind your partner’s requirements and to avoid overstressing her.

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Financial benefits were not always available for people with Parkinson’s disease if their partner was still working. Fiona who was still in her forties had already decided that she would take early retirement if a time came when her husband needed to be cared for. Steve whose wife was working got no financial help towards his care. Alan said that in applying for help it was essential to make it clear how difficult things were rather than put a brave face on them. His wife received a carer’s allowance. Stephen as a single parent got some help through ‘Carewatch’. He was anxious that as his children grew up they would not feel that they had to be his carers. Ruth’s daughter received a carer’s allowance so that she could help her mum with day to day living. Geraldine had paid care when her partner was away, to help her take her pills when she became rigid and couldn’t move during the night. Penny, who didn’t need much extra care now, worried about who would give it if she did reach that stage.
Isabelle decided that she would care for her mother when she could no longer live independently. This involved major changes in her family life. They moved to a house which could accommodate her mother on the ground floor. They created a room with en-suite toilet facilities and increasingly needed to arrange for carers to come in during the day as both Isabelle and her husband worked full time. Their two small children would sometimes have to take second place to their grandmother who, while not demanding, presented many crises which left Isabelle exhausted and as she saw it having to neglect the children.

Isabelle had to be a daughter, a mother and a carer.

Age at interview 60

Gender Female

Age at diagnosis 44

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And it’s kind of role reversal, you know, it’s like, you know, she says to me, You’ve got three children in this house.You’ve got the two children and meAnd I said, Yes, but then you’re my eldest And I said, And if I have to do it for them and if you’re sickAnd she’s been ill and sometimes she’s had an accident in the bed and, yes, at two oclock.The worst times are between two and four oclock and everyone says that they say, Whenever you’re ill that’s the hardest timesBut we got to a point where we wouldn’t spend any time together. If we went out somewhere the whole if we went out as a family, and my mum came with us I would sit in the back of the car with the children.My husband would drive, mum would be at the front because it’s easier getting in and out of the front.Fine, we’d go somewhere and I expect other people with Parkinson’s would know that the worst things are, Oh, I need to go to the toilet nowSo you’ve just taken the two children, then you’ve got to find the disabled toilet, disabled toilets are not always clean and tidy.

And you part of you sort of think to yourself, You know, why isn’t that clean and tidy because this is my parent I’m taking here And then you might just get her back in the wheelchair again and you push her off and you’d go saying, Actually, I need to go againOh, you have to try and remember it’s like having and it really is like having a toddler, toilet training somebody.

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After a series of emergencies and finally a fall which took her mother into hospital, both Isabelle and her mother considered arranging care for her in a nursing home. After a conscientious search for an appropriate one, she was transferred from hospital to a home not far from Isabelle, where she is well treated and contented. The home they have chosen is not cheap but Isabelle said that it didn’t seem so much when compared to the cost of having carers in their house and the difficulty of getting satisfactory respite care.

Some but not all of the costs of care were covered by allowances.

Age at interview 60

Gender Female

Age at diagnosis 44

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There’s a nursing allowance of eighty pound a week or something that goes straight to the nursing home.She has her disability allowance.High rated mobility, disability and her pension, single person’s pension but I honestly tell you I mean her nursing home fees are three thousand pound a month.And her mobility allowance is what five hundred pound, her pension for a single person is seventy pound a week.I’m I mean with her with her IFA I mean I estimate she will spend twenty five to thirty thousand pound in nursing care a year.

And if you get to the point when you actually run out of her money would it then be possible?

Well, this nursing home part of the parcel was I had to produce evidence that she had income to support her life there.What actually happens is and I asked the question when it starts to run out when you get to the threshold, then they apply to the council to so to pay. She won’t be moved out of her room and that is and that applies to all nursing homes.But I think all nursing homes have to go through that process.You have to show you have some money.I think they also, sounds funny, there must be a life expectancy number of years you can expect to have somebody there.

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The decision to move someone into care is rarely easy. None of the older people interviewed seemed to be contemplating this move. Instead they were making sure – with some financial support through their occupational therapy departments – that their houses were made more suitable for their situation. Many people had been offered supports for their staircases and baths. Some had bathrooms transformed into shower rooms. Bedrooms had been moved downstairs. Both Geraldine and Andrew had had stair-lifts installed. People had a variety of manual or electric wheel chairs and Brian had a chair which could deliver him into a standing position or allow him to lie back as he wished.

Now and the future

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Advice to others

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