mrs. louise burns - open university

Dementia Care Louise’s Story

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Scene 1 Mrs. Louise Burns I’ve lived in this house all my married life – and – oh I know people say it’s too big for me and too much to manage – but it’s my home. Most of my friends used to live close by, but many of them have either moved away or they’ve died. Sometimes I wonder what there is left to live for – I think I’ve lived too long. Katherine’s good, but she can’t come that often and anyway she’s got her own family to care for. I don’t like to be a nuisance. I still cook for myself though – go out to the shops when the weather is fine – and do all my cleaning. It’s the garden. I do miss being able to do the garden. Do you know, when Ken died that was how I survived. He used to do everything and I took it on. I love it – my son-in-law does all the heavy stuff but I still do the weeding and planting my flowers every year. I love lots of colour. I’m not sure I could manage without a garden. Katherine Harding Louise’s daughter The situation came to a head after my Mum had a bout of physical illness, which led to her coming to stay with us. We live three hours drive away from Mum’s, so it wasn’t an option for her to stay in her own home and for me to support her there. She had to stay in bed for the first two weeks and was taking strong painkillers so she was a bit out of it. Her physical illness made her mental confusion worse. I’d noticed some forgetfulness and that she wasn’t really her old self over recent months, but I had put it on the back burner, I wasn’t quite sure what to do. She kept asking to be taken home - to her own home - as she got better, so after about five weeks we took her home. The next day when I phoned my Mum it was obvious that things were not right and I had to do something which led to my contacting social services and my Mum’s GP. Sandra The Social Worker Hello Katherine, I’m Sandra and I am your mum’s social worker. Your mother has been referred to me to for a care assessment. I will do this by spending time with your mum and then with both of you. You might want to have someone else there as well? It is a good idea to have the people closet to your mum present. I will also talk to her GP and any carers – if this is alright – to get a full picture. There is quite a lot of paperwork we have to do before I can actually do the referral. Some of this relates to how the care might be funded. We’ll look at her assets and savings to see what she can afford, and what funding she might be entitled to. We’ll also have a look at the level of her needs, and this is what determines the type of care she’s entitled to. You will get a copy of the report. This information won’t be shared with anyone unless you have agreed to it being shared. I am going to send you a list of homes and an explanation of the inspectorate reports.


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What I suggest is that you begin by looking at the homes that you think might be suitable. You can either ring up or make an appointment – or you can just turn up. If you don’t want to call them first – I should warn you though it’s probably best not to go at mealtimes: you really want the staff to have time to show you around and be able to answer your questions. Ideally, you would take your mum with you – but you might prefer to have a look first yourself. I can’t advise you on what home to choose. And, after admission, there is a month for you all to decide whether or not this is the right place. So if you are unhappy with the choice it’s not final. But, once your mom is placed and this is where she wants to stay then if your circumstances change, it is really difficult to get into another home – because she won’t be seen as a priority. Well, unless her condition deteriorates and then she might need to have nursing care or specialist dementia care. The GP The assessments suggest that your mother has early stage dementia. She would benefit from having someone she knows spending more time with her. Is this something that you might be able to do – is there anyone in the family who could offer support? I can arrange for someone to call in, from the mental health team. They could call in on a regular basis, but that would only be once a week. There is a particular vicious cycle which can develop in people with dementia: If your mother does not drink enough or forgets to eat then this will make her problems worse. So you’ll need to keep an eye on how much she’s eating and drinking. It can also help people with early stage dementia to attend day care – they’re able to mix with other people and get some stimulation from the activities and also from the company. I guess what I am really saying is that she doesn’t need residential care at this stage. She can manage reasonably well enough at home, as long as someone able is able to oversee her care. If there wasn’t someone who was able to do this, we would be looking at some form of sheltered accommodation. Katherine The GP’s appointment included an assessment, which confirmed a problem with Mum’s memory. Social services provided me with booklets about choosing care homes and information on care services, since I was new to it all but we had to wait to get an assessment. As I couldn’t leave Mum in her own house she came back to be with us. We were trying to juggle work commitments with Mum couldn’t understand why we couldn’t be there all the time with her. It finally got to the point where we all needed a break from each other. Mum needed to recuperate physically so I persuaded her that respite in a residential care home would be a good idea. I did my research at a distance using the booklets and the internet for the Social Care Inspectorate reports. I decided By phone I spoke with the managers of the care homes which read as if they offered good quality care and were happy to have us visit and, if satisfied, for Mum to stay for an unspecified period.


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Aidan Care home owner Welcome to the Laurels! You take a seat there, Mrs. Burns – and do you want to sit here Mrs. Hardy. Sorry, Mrs. Harding. Now, I’ll tell you a bit about the home and then we can have a little tour, and you can meet some of the other residents and see the bedrooms. They’re not big – but they are cosy and really nicely decorated. We’re very proud of this home. As you can see, it’s quite new and purpose built. It’s really light and airy, and the carpets are kept spotlessly clean. We have really good cleaners here. I don’t know what we do without them! You’ll have you’re own room Mrs. Burns. You won’t have to worry about meals or anything like that, it’s all done for you. And your washing – you will need to put labels in all your mum’s clothes – and any little possessions she wants to bring – you will have to label those too. Some residents are very confused and get mixed up with what there’s and what is someone else’s if you know what I mean. Every day we have some sort of activity session. Last month we had a celebration – one of our residents was 100! And we got the residents involved in making the table decorations, and some of the ladies were actually really good at it! Other things we do…exercises to keep fit – things that you can do sitting in the chair, you know, even throwing a ball for someone to catch is good exercise. People come and sing to us, the local school choir comes in now and again, we have an older gentleman who comes and sings – and some people like to join in – do you like that sort of thing? Do you like music, Mrs. Burns? Then there’s the usual – bingo for those that like it– or watching the telly. We try to take our residents out when we can –when the weather’s fine of course. Shall I take you round the home now, and then we can have a cup of tea. You can ask me questions as we go round. Just ignore Bessie here –she always thinks that visitors are for here – don’t you Bessie – go and sit in the lounge Bessie – there’s a good girl. Rosanna! Take Bessie to the lounge while I show the visitors round please. Katherine I don’t have siblings and there is no other close family so I relied on my family - my partner and daughters - to share these decisions with me. It did feel odd making decisions for my Mum and, not knowing where we were in our usual mother-daughter relationship. My mum did go along with the idea of going into a residential home for respite care, even though she wasn’t very happy about the prospect. But I felt it stopped us going around in circles. Mum kept insisting on going back to her own home and I had to keep going to get her because she couldn’t manage – so the respite care stopped that particular cycle, giving us the chance to put something in place for the longer term. We took Mum first to the care home which came out as favourite from my desk research and which impressed us with the warmth, the openness and the caring attitude of the staff. Mum settled in well but still wanted to get back to her own home. A social worked then contacted me to arrange an assessment for my Mum which led to a care package being put in place very quickly and Mum was able to live on her own again. Mum has a referral from her GP to the memory clinic but she insists there is nothing wrong with her memory. Part of the difficulty in putting arrangements in place to support Mum to continue to live in her own home is that she doesn’t accept the need for it.


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Expert view: David Sheard, Director of Dementia Care Matters Obviously the decision about someone going into a care setting is highly complex. It usually involves a crisis, and that crisis might either be an individual, or in the family network. It often feels as though the person isn’t central to the decision, and as though there are many professionals advising and guiding people around that person, rather than that person being central – this is one of the major decisions of their life. What we need to do is to shift that emphasis really. There’s been gross manipulation of people with dementia for many, many years. But of course the realities are, if you have dementia and you’re going to live in the community, you’re going to need a support network. And that support network is going to involve impacts on other people, impacts on finances. It is very complex but for me the decision must be in terms of this person with dementia, what is the balance re: their quality of life? Then looking at the family network they’re in: even if their own quality of life is still possible to be maintained, in the equation that person with dementia also has to find a way to be helped to see the impacts they’re having on other people. The person with dementia I think needs an assessment that is not checklists and ticked boxes. It’s about, “How have you made these big life decisions in the past?” and are they making a decision that’s compatible with their life history?


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Scene 2 “This is their home, and we are like a family.” Katherine The care team that were looking after mum were very good. But they couldn’t be there all the time, and mum was getting very confused in the evening and the night time. She kept ringing up the GP, and the GP would then ring me – and I couldn’t just drop everything because I work full time – and drive for three hours – to give my mum the full time care that she needed. So eventually we decided we had to look at long term residential care for mum. One of the first things I noticed was how important meal times seemed to be to the residents. I visited mum just before dinnertime once. The place was pretty dead, but as soon as dinner was announced, all the residents almost rushed to get to the dining room. But it wasn’t an inspiring experience. No one even spoke! It was all minced food, not the sort of food she is used to. So, even though mum is quite a new resident I asked about whether this could be changed. Katherine and Louise Katherine: Mum likes her food don’t you? Louise: I like my food Katherine: And the food in here is very nice, isn’t it? Louise: Oh yes. Katherine: And the girls – they’re not allowed to eat in the home – I’ve never even seen anyone here have a drink. They have breaks, I know. I think they should all eat together – some of the carers are really close to the residents and I think it would be nice. Berenice The Matron I don’t think eating together is a good idea – well several reasons really. For one thing, we need to feed quite a few residents and watch those who feed themselves quite carefully. I mean, some of them just swallow their food without chewing, and they could choke. Everyone here has been trained to do the Heimlich manoeuvre and we’ve got a suction machine out there – just there in the hall. My main objection is that it’s not professional. I pride myself on the professional demeanour of the staff and how they conduct themselves. Of course, we all get fond of some residents – even the most demanding ones. But at the end of the day you are here to care for them. And to be able to do that job well they have to keep a certain level of detachment. Residents need their family’s support - encourage them to stay at mealtimes and to be with them. Take Jack, he comes in every day and he and Dot eat together in her room – where it’s private. I could just imagine what the head of home would say! We even have to pay for our own tea and coffee And that’s how tightly controlled the budget is. But for me it’s not the money – it is the professional side of it and in my book eating together is not professional. Louise Are you going to eat something dear? Why don’t you come and sit here with me? Come on love, I’ve cooked this for you and it’ll get cold. Why can’t you come and eat something? Oh dear – you must be starving. I can’t eat this– this isn’t what I like – where’s my proper food – where’s my knife and thingy? I like a nice piece of meat or fish – I don’t want this – oh dear – where’s my food? Where’s that nice girl – the one I saw before – what’s her name – you know – the – oh dear – what’s her name – I want her where is she? Help me someone, help me.


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Rosanna

Care Worker I think that we should do much more with the residents and we say that this is their home and we are their family – or this is like one big family – but we never even sit down and have a drink with them. I think that sharing mealtimes together would be good, but there are a lot of staff members who don’t agree. Rick

Care Worker I want a break and I want to be on my own or with another carer, I don’t want to be with the residents. I don’t like the food they eat- I would not want to eat it – I don’t want to spend every minute of my shift with them – no man – I hope that doesn’t come in! Expert view: David Sheard, Director of Dementia Care Matters I think for anyone who has ever visited someone in a care home, I think the thing that the thing that is most striking is the division between “them” and “us”. Separate staff toilets, separate staff mugs, people in uniforms and badges, and staff observing people eating and not sitting to eat with them. And for me that is the basic starting point to change a culture of care, is to examine why are we living with these divides? And so for me, the getting rid of uniforms or staff mugs or sitting and eating with people, isn’t just about what it its. It’s actually about relationship-centred care. And it’s about actually saying, We want to create a different type of relationship. If you can imagine if I suddenly placed a meal in front of you now, you’d say, “Oh no, David, I’m not thinking about a meal, I’m not ready!” And that’s actually what it’s like to have dementia, with a meal put in front of you. You’ve not had time beforehand to put your self through a process that prepares you for it. We all do: we will get the kitchen sorted, lay tables, all sorts of things go on before the meal, which enable us to then eat more. And what I’ve been able to prove is that actually, if you do those same things with people with dementia, they eat more, but without it, what starts to happen is the meal starts to fall apart, because people with dementia aren’t there in that place in their mind. I mean they can do this by staff giving out pictures of food and talking about food, It can be as simple as something like a wooden spoon and getting people to talk about when they used to bake cakes – it can actually be bringing out from the kitchen some of the things that actually will be in the meal. So that the carrots, the potatoes etcetera are brought out. Now obviously they don’t actually go into the meal, but actually people with dementia can be involved in, you know, if you’re able to peel, you can peel, but it may be in later stages of dementia care, you just hold the item. And just the texture, the feel of it in your hand is enough that it will trigger something about food, but they’ve had some connections that will help them start to think about that they’re moving towards the idea of a meal that’s going to be a positive experience.


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Scene 3 “Freedom is a basic human right.” Katherine Harding

The daughter To their credit, the home decided to do mealtimes in a different way, once a week, on a trial basis. They even let mum lay the table, although some of the residents must have been bemused by the extra number of knives and forks – she likes doing things properly! Something I didn’t really think about when deciding on a home was the range of the degree of how advanced the dementia would be in other residents. I don’t want to have to move mum when her dementia starts to get worse, because I know it’s traumatic for people with dementia to have change and upheaval, but I’m not sure it’s doing her much good to be around people who are so much more confused than she is. And with so many residents with advanced dementia to keep safe affects how all of the residents are treated: not only the amount of time that they can give to the less severely affected but what they would call issues of safety. I was surprised to find out that even though there is no rule about not letting residents go in the garden, when I asked, the staff were pretty flustered because none of them could even find the key to the patio doors! Louise Burns I used to be in the garden all the time, from first thing in the morning till dark. Look at those flowers out there – I planted those – can you see them? Oh and that tree over there and the bush – look at it! I think I need to water them now – I haven’t watered them today – but I can’t open this door – it seems to be stuck – can someone help me to open the door? Will you help me dear? Rick

Care Worker I have to admit I was a little bit shocked when I first came here, just how far gone some of the residents are – I mean Nellie – she’s completely out of it. Doesn’t really know where she is. They could be outside on their own? There’s no way! Even Mrs. Burns. She’s a bit more with it, but she’s a bit wobbly some days and if she fell it would be a broken hip. All the accident forms…I would be the one to get it in the neck. It’s just not worth the risk. Rosanna

Care Worker Residents with dementia, in the advanced stages, become very dependent again and we have to protect them. It is our duty to stop them from harming themselves. Some of them don’t even know where they are – they could just wander off, cross the road, anything!


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Berenice

The Matron Some of these young girls need a lot of support and guidance. It’s their first job, and they look to me like a sort of a parent figure almost. The staff have to follow the code of practice in the home and safety has to come first. It’s no good having someone gardening when two others have gone down the drive. On the day that Mrs. Burn’s daughter asked for the key to the garden, I actually had three of our members of staff off sick. We don’t shout too loudly about this, but there is quite a problem with sickness– it’s the same with all the local homes , a high sick rate. Don’t get me wrong, there is a core of really good staff members – mostly the older women – who would never let me down. But the younger ones – some don’t stay in the jobs for long, and some you wish wouldn’t. I have had some brilliant staff who’ve gone on to do their nurse training. Expert view: David Sheard, Director of Dementia Care Matters Obviously in the scenario Louise is wanting to get outside, and she confronts a locked door. And how many thousands of people with dementia today are in that scenario! What I find quite baffling for me is, whilst I talk about it being a symbol of freedom, it really is about a basic issue of human rights. And I believe as people with dementia get earlier diagnosis, they will form their own action groups in society. One day, people with dementia will come along, and they will take us to the European Court of Human Rights on this. And there is no other group in society now that is held by pin codes, double-handled doors, without actually being under the Mental Health Act, and deemed to have impaired capacity. So for me the locked door is not just about the right to fresh air, and the right to feel free inside, it’s actually a basic human right to not be locked up. Katherine It took some persuasion, but in the end, the staff began to take the residents into the garden some days if the weather was fine. I do wonder if it was only because I made a fuss. A good thing that came out of it was that a local group of volunteers offered to take the residents out on day trips occasionally. My mother was a volunteer at the hospital and I know from what she has told me – and the little bits I have done myself, that these trips are a lot of work for the home, having to organise the volunteers, and making sure residents who can go out are dressed on time and things like that. To me – if I was a carer in the home – I would think that it was all worth it to see the residents being part of the community instead of shut away. Mum is reasonably happy and settled now. I can see that the care staff work incredibly hard. One of them told me he’s thinking of doing his nurse training. The home isn’t perfect, and I shall probably have to keep an eye on things, I owe it to mum to make sure she gets some of the things she wants - but at least they’ve been willing to try some things out, for the better.


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Dementia Care Roundtable Discussion Carol Komaromy Senior Lecturer, faculty of Health and Social Care, The Open University. Has a special interest in end-of-life care, and has researched the quality of care in residential care homes. David Sheard Director of Dementia Care Matters, an organisation offering training in improving the quality of life for people with dementia. Has worked for 30 years in health and social care. Robin Asby Has been a Senior Lecturer in The Open University, and is a consultant specialising in Systems Thinking. Penny Marrington Consultant and former Senior Lecturer in Systems Thinking and Practice at The Open University. Cheryl Byrne Supported her father through dementia and is a Phd student at The Open University. Title of Phd: A Systems Approach to Dementia and Patient Support. Carol: Welcome to the Open University. I’m Carol Komaromy and I’m chairing this panel discussion on dementia care. People who work at the sharp end of care are faced every day with a lot of difficult decisions that they have to make. Can I start with us looking at the dilemmas that are presented in the interactive scenarios. First of all we have a situation where someone has to choose the type of care they want their mother to enter, knowing that, for Katherine, her mother probably won’t be able to be fully a part of that choice. So she’s going to have to represent her needs in the best way that she can. David, I wondered if you could tell us a little bit about how people might set about choosing a care home? David: I think that they get very little help in reality. And if you don’t understand about the experience of dementia yourself, and you’re also full of a whole range of guild as a relative, what people look for is a “hotel”. And I think they make judgements on an environment, they are unaware that actually they need to be looking at: Are people’s life histories maintained? Is there a sense of belonging? Are people meaningfully occupied in their reality? Cheryl: Really it is a journey you take with your relative, and unfortunately I think what happens is by the time you’ve understood something it’s too late, you’ve gone past that point. And so, you’re very right, we look mainly at the swags and tails of the curtains. Whereas in reality dementia may be very messy. And it may be that actually if there is a less structured lounge area that could actually mean there is a better quality of life for people, they’re actually living rather than on the outskirts of a room watching the television. David: It’s all about the quality of life. Are people living in the moment, are they busy and occupied? And as you say, that does look messy. You know, in the programme with Gerry Robinson you’ll see me saying where’s all the stuff, you know, why is it so empty? People with dementia can spontaneously occupy themselves if you fill, literally fill physically their inner world. We need a massive public education programme to help families understand that. Carol: Penny, what’s going on at a wider level? Penny: I think probably we have been schooled in the notion that when our relative becomes very different from the person we used to know, we ought to be handing them over to some sort of system that will take care of them, and in a way we feel no longer qualified to do it for ourselves. But in fact, what we really should be doing is interfering, with every power we’ve got, to make sure that we carry that real person that we knew into the next setting that they’re going to be spending their time in.


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Carol: Moving on to the situations that we’ve got in the scenarios, the first one is interesting because it’s something that is very basic to everyday life. Care homes call themselves homes, and a lot of the care staff from my experience talk about how this was the residents’ home. So one might expect that the residents might expect the care staff to be much more part of a family, and one way of doing that, one way of representing that which you’ve talked about, David, is actually eating together. David: If you watch and observe mealtimes in care settings, they aren’t what we would desire. We don’t want a short, sharp, task-based approach to getting food down us. We want to engage, we want to connect, communicate, laugh. While people are standing in uniforms observing you, what that does is it oppresses both groups. I believe that the staff suppression is a reflection of the oppression of people with dementia as well. And so staff who don’t – or think they don’t – want to sit and eat with people with dementia, because they have become so constrained themselves that they’ve lost sight of just what it feels like to sit and be with people. And so actually, what actually happens is that people with dementia eat more, food wastage is less, but within that, managers are correct when they say to me, that actually we have people with intense needs needing a lot of support to eat. And we wouldn’t be able to have staff sitting socialising as well as meeting those intense needs. It’s because they’re still stuck in a system, and what I’m about saying is, re-organise the kitchens so that actually people with dementia who are active that’s social, sitting with staff. And then have a second sitting, where all the staff, knowing everyone else has had a great meal, can then really support people with dementia with intense needs around eating. Carol: I can see Robin itching to get in here too! Robin: Firstly the notion of control, which says that we want this to be orderly, we want this to look neat and tidy, and unfortunately life isn’t like that. And I think that the supporting idea, which is right at the heart of the way we think, is the idea of categorisation. So meal time is different to other times if you like and has to be put into its careful slot and so therefore we have to control what’s going on here in this careful slot. The idea of, are we in this for a profit, or are we in this to care for the people we’re looking after? The root is another problem we have in this country, which seems to be that profit is a constraint on a business, not the purpose of the business. The purpose of the business in this case is care. Carol: Perhaps we could use another example from the scenario, the resident who wants to go out into the garden. One might think that it’s quite a simple request, and yet clearly, allowing someone to go outside creates quite a dilemma. I would argue it’s particularly an ethical dilemma as well. Cheryl: Certainly at certain stages of dementia, people like to walk a lot and we call it wandering, where people will set off and walk backwards and forwards along the corridors and suchlike. So to be able to actually take people out walking just seems to have bypassed everybody. We have people just marching up and down corridors, which it’s just one step further to sort of think, “well we could enhance this stage of this dementia, and be some benefit. We can be outside we can be looking at things – but working with people and going with the flow seems to me to be the way forward. Carol: So David, what are the costs and benefits of allowing that quite basic freedom?


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David: If you came to Merrevale House, which is the home and our team featured in the programme, you know at this point in the day probably only half the people living there would be in the building. And people would visit and say to us, “Where are they? Where are they? Where is everyone?” And we’d say, “Well they’re out!” And they would say “Well, where?” And we’d say, “Well some of them have gone for a walk down the canal with a care worker, some are in the supermarket”, and they’ll say, “But what about the risk of that one care worker with four people and that one worker in the supermarket?” And my reply is, “What about the risk of holding them all in a building, bored to death?!” Ok, yes, we do risk assessments, it’s a legal requirement, but who is risk-assessing emotional harm? And for me the greatest risk if you have dementia is the emotional harm you will experience held in a building where you can’t get out either spontaneously or with support. Penny: The thing that worries me about the garden incident from the carer’s point of view is the denial of the authenticity of a response that he or she would want to make to a resident. And I think that that in itself is very damaging for that person. Carol: One could almost argue that it’s common sense. Why is it so difficult to change things? Robin: I think one of the reasons is this sort of distrust attitude, an insecure feeling, is a part of our society. David: We’ve an ethos of professionalism – professionalism is about suppression of emotion. And I think until we challenge that whole ethos that, professionalism should be about creating attachment, and closeness, and even getting the word love back in. Penny: Might we not be seeing that some of the most responsive care for people with dementia intuitively comes from the people who are the least professionalised in the system? David: You know, we run adverts that don’t ask for skills, competencies, NVQs, that say, “Can you dance? Please contact. Do you wear your heart on your sleeve? Please contact. Would you share your life history with a stranger in a bus queue? And what happens is people come in their droves. They come from factories, from taxi rank cabs, who from all walks of life – who when they start in dementia care I always am humbled, and think, well so much for my thirty years! Because look at them. They utterly get it. They’re people who understand what life’s all about. We really need to get back that naturalness, that instinctive care, towards people again. Carol: David, at the very beginning you talked about stuff. What do you want to see in care homes? David: Lorry loads of it! Dusters, cleaning items, masses of fabrics, all sorts of colours and textures, hats, all the stuff we have in our homes. What it does is give the widest opportunity to think, “Well actually I was interested in that, I am interested in that.” Carol: Robin, what do you think that people ought to have? Robin: Well, what sprang to my mind was something my son has given to me which was a box of my old Meccano. Carol: I like that. Penny? Penny: I think as many photograph albums as there are people that live there. Carers and the residents should all have pictures of their life.


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Carol: And for you, Cheryl? Cheryl: Particularly one gentleman who I can recall who liked to walk up and down with a magazine. People always used to try and take his magazine off him they all wanted a magazine to walk up and down with. Carol: I’ll end with a short anecdote about when I was a cadet nurse, and I was looking after a woman who was probably in her late eighties, who was a complete stranger to me. But on her bedside locker was a photograph of herself as a young woman. And I can still remember how I recognised that here was someone whose life was coming to an end, but who had once been stunningly beautiful, and at the same age that I was as looking after her. And it profoundly affected the way I was able to care for her. And I think something as simple as that can make a huge difference. It’s about allowing yourself to see someone for who they are I think.

mrs. louise burns - open university

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