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What it’s like to care for someone with dementia - a carer’s diary
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„Niniejsza broszura zawiera wyjaśnienia, co może przydarzyć się osobom, które zachorują na demencję lub opiekują się kimś cierpiącym na tę chorobę. Można tu znaleźć informacje na temat dostępnej pomocy. Jeśli chcieliby Państwo otrzymać jakiekolwiek z tych informacji w swoim języku ojczystym, prosimy o skontaktowanie się z nami pod numerem 0800 585544."
Everything in Sally's diary is based on a real event that has happened to someone living in Suffolk. We would like to thank all of the people living with dementia in Suffolk who shared their experiences and whose lives are woven into these diaries. The diaries do not make for comfortable reading. Dementia can be cruel. But the people we spoke to told us clearly that they did not want us to pretend it was any different. Dementia can't be ignored and, as one of the people living with the condition told us, we've all got to learn to respect it, and the people affected by it. It is important to tell uncomfortable truths - but it's also important to recognise that there is a lot of support available - and that some ways of coping are more effective than others. The people we talked to spoke warmly of the kindness and support that they had received from many local services, from their family doctors, and from Suffolk Mental Health Partnership NHS Trust's own staff. We would like to thank 'User Views' for their help in carrying out the interviews. We would also particularly like to thank Suffolk Family Carers, Suffolk Alzheimer's Society, Suffolk Age Concern, Suffolk User Forum, and Suffolk County Council for their help in this project. I would also like to pay tribute to Gabriel Tamaya, Public Benefit Officer with SMHPT, for his commitment and hard work in bringing this project to fruition.
Wszystkie osoby w wieku co najmniej 12 lat mieszkające w Anglii są upoważnione do ubiegania się o członkostwo w organizacji typu foundation trust, takiej jak nasza.. Pragniemy, aby jej członkowie byli tak różnorodni, jak społeczność, której służymy. Jeśli chcieliby Państwo uzyskać dodatkowe informacje na temat tego, co oznacza takie członkostwo i jak złożyć podanie w języku polskim, prosimy o skontaktowanie się z biurem ds. członkostwa pod poniższym adresem. SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
“O presente folheto explica o que pode acontecer às pessoas quando passam a sofrer de demência ou cuidam de alguém com demência. Explica ainda quais os serviços que se encontram disponíveis para prestar apoio a essas pessoas. Caso pretenda obter essas informações no seu idioma, entre em contacto através do número 0800 585544” Todos aqueles que vivem em Inglaterra com 12 ou mais anos de idade estão habilitados a candidatar-se à associação na fundação do nosso Fundo. Gostaríamos que os nossos associados fossem de origens tão diversas quanto a população que servimos. Se pretender obter mais informações sobre o significado da associação e como candidatar-se em português, entre em contacto com o departamento de associação através do endereço abaixo apresentado. SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
Robert Nesbitt Director of Community Engagement Suffolk Mental Health Partnership NHS Trust July 2009
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There are 700,000 people living with dementia in the UK today, a number forecast to double within a generation.
Tu esday 29 Ma rch SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
Something isn’t right. I’m worried about Jim. His memory lapses are becoming more frequent (forgot twice last week to meet as arranged!). Also struggles to find the right words, sometimes to the point where he simply gives up trying and storms out of the room in frustration. Occasionally has no recollection of events – e.g. our trip to London last weekend! (?) Jim’s never been good with remembering people’s na mes, (neither have I for that matter) but today he forgot the na me of his book keeper – he’s worked with him for fifteen years! Not good. I’m really concerned for Jim’s health. But if I attempt to raise the issue with him, he just blusters and becomes angry. He refuses to talk about it. Says I’m blowing things out of proportion. Not so sure.
SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
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Making a diagnosis of dementia is often difficult − particularly in the early stages.
Wednesday 16 May Took some cajoling, but Jim finally agreed to visit his GP. We went to the surgery together. The doctor was very patient and understanding. He spent some time talking with us about our worries, and asked Jim some questions designed to test his thinking and memory. He also gave Jim a physical exa mination and arranged for blood and urine tests to be made, to identify any possible conditions that may be causing his symptoms. On the doctor’s advice, we agreed that Jim should be referred to a specialist for a detailed assessment. Jim asked the doctor how long it would take to make a diagnosis. Apparently it's very hard to say. It’s all very distressing, but I suppose we just have to face it and get on with it.
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Black and minority ethnic communities Did you know that Suffolk Family Carers have an Inclusion and Diversity project that works specifically with family carers from BME communities? Suffolk Family Carers aims to provide an inclusive service that meets the diverse needs of all family carers living in Suffolk. Evidence both nationally and from our own research identifies the importance of recognising family carers’ cultural, religious and language needs. This project aims to • identify these needs in Suffolk’s BME communities • raise awareness within Suffolk Family Carers and with statutory, voluntary, private and community organisations • act as a resource for family carers and professionals • promote the involvement of BME family carers in consultation and training, and • find and support unidentified family carers from BME group You can contact then via the www.suffolkfamilycarer.org website or the helpline 01473 232679 Mon to Fri 9am – 4pm Friends of African Caribbean Carers & Sufferers of Dementia Is a London-based national charity that has useful information on its website which is at www.faccsd.org
Crossroads A Crossroads service is about giving time - improving the lives of carers by giving them a break from their caring responsibilities. Our aim is to provide a reliable, tailored service, for each carer and the person they care for. We have schemes in most parts of England and Wales, which provide a range of services. Every scheme provides practical support where and when it is most needed - usually in the home. A trained Carer Support Worker will take over from the carer to give them 'time to be themselves'. We talk to the carers about how often they would like us to visit, how long the visit should be and at what time they would like our support provided. They then have 'time' to use as they wish - to see friends, keep appointments, study, read or even just to sleep. Caring for Carers West Suffolk Crossroads Telephone: 01284 748811 South East Suffolk Crossroads Telephone: 01473 730455 www.crossroads.org.uk/south east suffolk Waveney Crossroads Telephone: 01502 574526 www.crossroads.org.uk/waveney
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Resources for people affected by dementia and their family carers
There are currently 15,000 younger people with dementia in the UK.
Our commitment to equality and diversity Jim and Sally may be fairly typical – but of course everyone is different. Dementia affects people from all walks of life, lesbian and gay people, and people from BME communities. There can also be particular challenges for people already living with another disability. We’re committed to services which start with the individual and their needs. Here are some resources that you may find useful. Lesbian / Gay / Trans Although attitudes – and the law – have changed, isolation can still be an issue for lesbian and gay couples, particularly in rural areas. There can be similar issues for transgendered people.
understanding different lifestyles. Society needs to recognise the needs of older gay men and lesbian women and those caring for a relative, partner or friend with any type of dementia, including Aids-related dementia.
The Alzheimer’s Society runs an LGBT support group – here is what their web-page says,
The Society is trying to do this by through its LGBT Support Group, a telephone helpline service staffed by gay men and by lesbians.These trained and skilled volunteers are able to offer a listening ear.”
“Lesbian, gay, bisexual and transgender (LGBT) people caring for a partner, relative or friend with dementia face many challenges - not only those discussed on other pages of this site, but possibly many more. For example, they may have to 'come out' to many professionals - doctors, social workers, nursing home staff - who have become involved in what may previously have been a very private relationship. Professionals do not always understand LGBT lifestyles and some may even be judgmental when faced with scenes of affection! Caring for a person with dementia can cause feelings of isolation. This can be exacerbated by people not
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If you would like to talk to someone, phone: Roger: 01843 220932 Patricia: 07973 916335 Bruce: 01865 847471 Email: gaycarers@alzheimers.org.uk The web-page is at www.alzheimers.org.uk > about dementia > caring for a person with dementia > gay carers The network publishes a newsletter that you can also download from the website.
Tu esday 12 Ju ne Went with Jim to visit specialist .
e nt a l M k l o f f Su e rs hi p n t r a P h H ea lt u st N H S Tr h s. u k n . p h m s . www
We spoke with the consultant for some time. She asked lots of questions some were difficult for Jim – but the consultant was so kind – when Jim couldn’t remember she just moved on. Very ‘matter of fact’ and it so it wasn’t as bad as I thought and I think I was more bothered than Jim! I’d also prepared a list of our questions and concerns in advance, which I found very helpful. Jim asked outright whether he might be suffering from Alzheimer’s disease. The consultant said there could be many reasons for Jim’s symptoms, including depression and stress, but other causes such as dementia could not be ruled out. They did some behavioural and mental tests. Also gave Jim a brain scan. No immediate evidence of anything sinister such as a tu mour – relieved to say! But they said it could take 6-12 months of monitoring before a diagnosis can be made. I can’t believe this is happening. It’s not as though he’s old. We always talked about how much we would enjoy retirement.
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It is important to try to continue with activities that people enjoyed before dementia.
Friday 7 Dece mber
Satu rday 19 April
Today worst fears were founded. Went with Jim to GP to get test results - diagnosis not good. They believe Jim has Alzheimer’s disease. Jim seemed to understand when the doctor explained, and took it quite well. Me? Devastated.
I really thought I wasn’t really the sort of person to join groups. I’m not a joiner-in – that’s what I used to say to Jim but it isn’t at all what I’d expected. Becoming involved with Suffolk Fa mily Carers and the Alzheimer's Society group meetings and activities has made a huge difference in my ability to cope. It provides that essential point of hu man contact.
Although I wasn’t surprised when the doctor broke the news (had suspected for at least two years), I couldn’t help shedding a tear for Jim (for us!). It was the shock of knowing for certain, I suppose, and, if I’m honest, I felt relieved, as if a weight had been lifted. We walked home through the town centre. It was late-night Christmas shopping. Fa milies enjoying themselves, carol singers, brightly lit shop windows. Reminded me of the times when we would bring the children. Tried to talk with Jim about my feelings; hoped the festive atmosphere might reawaken something. No success. What have we lost? Feel empty. Jim’s GP has put us in touch with the community nursing service and says she will refer Jim to the social services when things get worse. Apparently they always get worse.
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Traditional gender roles can be an issue for carers. People often have to learn new skills, such as cooking or dealing with household finances...
I’ve recently discovered the ‘Alzheimer’s Talking Point’. It’s an online community for people with dementia, carers, fa mily and friends. If something is worrying me, or even if I just feel the need to communicate, I can go online and chat with like-minded people. It’s so liberating. There is such a lack of understanding by the general public (and even by some professionals) about what dementia means. It’s a breath of fresh air to be able to communicate with people who share my experience.
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1 in 3 over 65s will die with some form of dementia.
it i s t o li k e d r a h How n icat e. It’s i n g u h co m mchi n g s o m etsion Su nday 6 Aptil wat t h e t e le v i on n ot rea lly ... Our GP surgery has put us in touch with a wide but fo llo wi n g it support network. It’s been a real lifeline.
Jim and I have become members of the Alzheimer's Society. They provide information and support for people affected by dementia. The Society provides day care and home care support. And just as importantly, for me, they also run befriending services to help people live with the demands of caring.
ty Alz he im er’s Socie H el plin e: 0845 300 0336 g. u k info@a lz he im ers. or g. u k www. a lz he im ers. or
The Society has also helped us organise our financial affairs and power of attorney, etc. Jim has had to take early retirement due to his illness, and it’s been so stressful for me – dealing with the money side, which I’m not used to. But at least now I can stop worrying about the future. The Society produces more than 100 factsheets on dementia-related topics, which are available free of charge online. It’s a mine of information. There is also a telephone helpline, which is open from 8. 30a m to 6. 30pm. Great comfort!
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Monday 10 Dece mber
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I had a very interesting conversation today with a neighbour about what social services do. In Suffolk, they are called Adult and Community Services.
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I don’t think Jim and I need their help yet, but we might in the future. Apparently it is really easy to get in touch. You call ‘Customer F irst’ and tell them what is happening. They arrange for an assessment – not just for what Jim needs – but also for me as a carer. (Then they talk about what’s available, including access to their database of local services, activities and organisations who can enable a person who may have been isolated or excluded to resu me a full and active role in the community.) I didn’t realise there was such a lot and it is good to know that it will be there when we really need it. They aim to help people to live at home – which is what we want – and what with various aids and adaptation, help at home and respite, I find that quite reassuring.
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Carers often feel isolated from their friends and family. They are constantly on call.
Friday 21 Dece mber I always knew that people with dementia lose their memories. But there’s so much more to it than that. Jim doesn’t just forget ‘things’, he forgets their entire context. It makes him so unpredictable.
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If he leaves the house alone, he often loses his way home. I do my best to stop him going out without me, but it’s so difficult. I don’t have eyes in the back of my head! Sometimes it’s like looking after an overgrown toddler. He makes me so angry, and then that makes me feel guilty. It’s a vicious circle. On top of this, Jim is becoming so unreasonable. He forbids me to speak about his illness to anybody - even the children! Says he doesn’t want people feeling sorry for him, or thinking that he’s ‘mentally unwell’. I can understand it on one level - Jim has always been a proud man. But from what I’ve learned we can only expect things to get slowly worse. How on earth can we expect people not to notice ?
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163,000 new cases of dementia occur in England and Wales each year - one every 3.2 minutes. ds
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0845 450 d s.o rg.u k a Monday 31 Ma rch www.cro ss ro e is ea s D s ' r al ei me The social services have put us in touch with Al z h nt e rn at ion 880 I 7981 0 Crossroads, a charitable organisation which 020 . a l z. co. u k provides support for carers. We now have a www trained support worker who takes over for one day a week. It’s been a real lifeline. Crossroads are so flexible and have done all they can to fit in around my schedules.
For the first time in many months I’ve found some time to be ‘myself’. Occasionally I’ ll see friends, read or catch up on correspondence – very often I’ ll just sleep! Bliss! Crossroads also run clubs, which enable Jim to pursue other interests and gives me some time off. The groups have enabled me to learn from others in the sa me situation. It’s a place where people can speak honestly about their feelings without being ed is judged. ‘ W hat you de sperat ely ne
a bit of ti m e to yourse lf… ise People are so open about sharing I do n’t thin k pe op le real it ca n be… their knowledge and experience. ho w wea rin g rd an d it really is ve ry ha It really is such a boost. I kn ew th at ti m e wa s No longer feel so alone. what I actu ally ne ed ed.’
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Su nday 9 Ma rch
get th at really ‘It's th e ba ck up you to ke ep goin g a nd give s you th e will is is th e will to sa y ye s th t.’ rt ou worth while tryi ng to so
Really feeling the lack of sleep! Our day starts around 4a m, when Jim usually wakes up and begins wandering around the house. He appears to have trouble sleeping and has lost sense of time – very often he doesn’t even know what day it is. I’ve taken to buying a daily newspaper, to help Jim keep in touch with the wider world. He appears to enjoy reading. He does like to help in the garden too – well we always used to sort out the bedding plants together and I was a mazed at how he sorted out the seedlings today. It was like the old Jim back again! I’ve noticed that Jim is at his most restless and agitated during the early evenings.
Really feeling the loss of independence; also a sense of bereavement, of losing the Jim I know and love. Sometimes it’s easy to forget that this person who I’m caring for is the sa me man I married. It’s so lonely no longer being able to have a proper conversation. Feel isolated.
I mentioned it to the community nurse. She says Jim’s behaviour is known as ‘sundowning’, and is common a mong dementia sufferers. It can often be helped by physical or mental activity. I’ve begun to take Jim for an early evening walk in the park. Jim doesn’t like change, and often gets anxious outside his environment, but he seems to have warmed to the idea. Our walks appear to occupy his mind, and do seem to have made a difference. Max, the dog comes too, which Jim likes very much! I think Max knows that Jim isn’t well. He sort of makes allowances.
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People affected by dementia get left out of conversations, but still know what’s being said.
ily Suf fo lk Fa mli n e Ca re rs H e l pca re rs.org fa m ily www.s uffo lk 679 01473 232 pe n
is o t h e h e lp li n e 4 Fri d a y 9 – o t y a d n o M
Wednesday 16 Ja nu a ry Our world has gradually become quite small. We seldom socialise or go anywhere nowadays. People don’t visit. It seems they can’t cope with how Jim has changed. They say things like ‘I’d rather remember him as he was’ – which I find very hurtful because Jim is still Jim. He still has feelings.
at t h e k o o l e l ‘ Pe op i s a n d t h e n. ’ di a g n o s , n ot t h e pe rs o p ro ble m
And these are people we once thought of as close friends. Jim was always a committed church-goer, but even they don’t visit. I do think Jim has been badly let down.
On the rare occasions that we do see people, Jim gets left out of the conversation. People either talk over him or ignore him. It’s as if he no longer matters. Like people think he is invisible.
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I didn’t realise that there is so much help and information available – well I suppose why would I? Until all this happened with Jim I didn’t need to. There is quite a lot to take in, and I’m going to make a start my reading the Information pack that they’re sending me. I’ve arranged to call them back later this month. One thing I a m definitely going to have a think about is going along to a support group. That’s something else that’s new – I’ve never been one to join in groups and so on – but I do think that being with other people in a similar situation might help. Certainly not many people round here seem to understand – and I’ve got nothing to lose.
The worst part is that even Jim’s fa mily doesn’t want to know – even his daughter seems too busy to drop by. Perhaps they’re afraid or in denial, or simply can’t be bothered. Maybe it’s a question of ‘will it happen to me?’ We just don’t know. It breaks my heart.
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laughed. It seemed to defuse the situation. I’ve discovered that it’s important to keep a sense of hu mour. It isn’t all doom and gloom, living with Jim. Sometimes it’s the laughter that keeps us going – a precious point of contact. I do love him. Even though he is driving me mad!
Wednesday 5 Ma rch I hadn’t really thought of myself as Jim’s ‘carer’ – but I suppose, thinking about it, over the last few months, I do have to do more and more. If someone had suggested that I call Suffolk Fa mily Carers’ helpline a year ago, I would have said, ‘why on earth would I want to do that?!’. Anyway – I called them today, and a m glad I did. I spoke to a really friendly lady there – told her what had been happening and it was just such a relief to tell someone about it. She listened and it really helped to know that actually there are quite a few people in almost exactly the sa me position as me. I don’t feel like I’m the odd one out. ti n g
o f re pea g ive i n t o e r i t I t to lt... ’ mes ‘So m et i y s e lf. I t ry n ot it’ s s o dif f icu m n ce, bu i m pat i e
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Satu rday 19 Ja nu a ry Went shopping with Jim for new clothes, we were in a department store. I only turned my back for a moment, and Jim had disappeared. I caught up with him just as he reached the top of the escalator. I grabbed Jim’s sleeve to stop him. This startled him and he lurched sideways into a pair of display mannequins and sent them flying with a crash! A store manager appeared (with a security guard!). When I explained the situation she was very understanding. She said her uncle was the sa me. But as I took Jim’s arm to lead him away, he said in a really loud voice, ‘B****y hell, she’s ugly!’ I asked him to be quiet, but he beca me argu mentative and said, ‘Why? She is b****y ugly!’ It may seem funny after the event, but at the time I could have died of embarrassment. Jim’s outbursts make going out so difficult. But he also hates being left at home alone, so very restrictive.
– e wit h it p o c ’t n a c n fa m ily it o r h e l p out o r w o r u o Y ‘ ’t v i s t h e y d o n h a s t h e st ig m a . It s u ppo rt .. nt a l ill n e ss. ’ of m e
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Carers often have to cope with aggression and physical violence from the person they are caring for.
Two thirds of people with dementia live in the community while one third live in a care home.
Monday 4 Fe bru a ry
Thu rsday 28 Fe bru a ry
Jim’s erratic behaviour can make even the simplest tasks stressful. Why do I have to ask him ten times to button his shirt? Why did he put his ju mper on before his shirt? And when I tell him he gets so upset. What’s the best thing to do? I don’t know. Just getting Jim to dress himself and eat his meals is a full-time job, and that’s as well as attending to his personal hygiene – he’s forgotten how to shave, bathe, use the toilet properly. He was so well turned out when we were courting – and he always took care of his appearance. He seems to have lost all motivation to take care of himself.
I found out early on is that there is no single way of coping with dementia. There are so many sorts - everyone has different needs and different ways of dealing with them. But although Alzheimer’s is an irreversible illness, I’m beginning to discover ways of doing things that make life a little easier.
C o n ce rn
Ag e p li n e Although I’m only trying to help him, Jim will say Fre e h e l 0 99 66 really hurtful things, or even accuse me of plotting 0800 0 on ce rn. org. u k against him ! Sometimes he’s quite aggressive – ec www. a g hitting, throwing, abusive – which is so completely out of character for the Jim I used to know. He was such a gentle person. It is Jim - but in some ways it’s not him at all. But the most distressing thing of all is when he doesn’t appear to recognise me. It’s as if I’m a complete stranger. When I think back to all the fun we had – he could always make me laugh even when I was cross. I do miss that. I really miss the laughs.
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Perhaps the most valuable thing I’ve learned is to go with the flow, i. e. not disagreeing with Jim when he is clearly confused. It helps to prevent a situation from escalating from a little thing into an argu ment or even aggression. So what if he thinks that it’s tea-time and it’s half past two in the morning? A cup of tea is always welcome and I can ask him to put the biscuits out. It all makes perfect sense – but it’s all completely bonkers! For instance, a problem I’ve found with Jim is that sometimes he no longer seems to recognise his own home. Last night we were watching TV when he said, ‘I want to go home”. I was shocked. I told him we were already at home. But he said, ‘I don’t live here’. It’s very difficult to deal with Jim’s confusion in a normal way without getting into a pointless disagreement. So instead I just laughed. When Jim saw that I was laughing, he also
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Carers often have to cope with aggression and physical violence from the person they are caring for.
Two thirds of people with dementia live in the community while one third live in a care home.
Monday 4 Fe bru a ry
Thu rsday 28 Fe bru a ry
Jim’s erratic behaviour can make even the simplest tasks stressful. Why do I have to ask him ten times to button his shirt? Why did he put his ju mper on before his shirt? And when I tell him he gets so upset. What’s the best thing to do? I don’t know. Just getting Jim to dress himself and eat his meals is a full-time job, and that’s as well as attending to his personal hygiene – he’s forgotten how to shave, bathe, use the toilet properly. He was so well turned out when we were courting – and he always took care of his appearance. He seems to have lost all motivation to take care of himself.
I found out early on is that there is no single way of coping with dementia. There are so many sorts - everyone has different needs and different ways of dealing with them. But although Alzheimer’s is an irreversible illness, I’m beginning to discover ways of doing things that make life a little easier.
C o n ce rn
Ag e p li n e Although I’m only trying to help him, Jim will say Fre e h e l 0 99 66 really hurtful things, or even accuse me of plotting 0800 0 on ce rn. org. u k against him ! Sometimes he’s quite aggressive – ec www. a g hitting, throwing, abusive – which is so completely out of character for the Jim I used to know. He was such a gentle person. It is Jim - but in some ways it’s not him at all. But the most distressing thing of all is when he doesn’t appear to recognise me. It’s as if I’m a complete stranger. When I think back to all the fun we had – he could always make me laugh even when I was cross. I do miss that. I really miss the laughs.
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Perhaps the most valuable thing I’ve learned is to go with the flow, i. e. not disagreeing with Jim when he is clearly confused. It helps to prevent a situation from escalating from a little thing into an argu ment or even aggression. So what if he thinks that it’s tea-time and it’s half past two in the morning? A cup of tea is always welcome and I can ask him to put the biscuits out. It all makes perfect sense – but it’s all completely bonkers! For instance, a problem I’ve found with Jim is that sometimes he no longer seems to recognise his own home. Last night we were watching TV when he said, ‘I want to go home”. I was shocked. I told him we were already at home. But he said, ‘I don’t live here’. It’s very difficult to deal with Jim’s confusion in a normal way without getting into a pointless disagreement. So instead I just laughed. When Jim saw that I was laughing, he also
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laughed. It seemed to defuse the situation. I’ve discovered that it’s important to keep a sense of hu mour. It isn’t all doom and gloom, living with Jim. Sometimes it’s the laughter that keeps us going – a precious point of contact. I do love him. Even though he is driving me mad!
Wednesday 5 Ma rch I hadn’t really thought of myself as Jim’s ‘carer’ – but I suppose, thinking about it, over the last few months, I do have to do more and more. If someone had suggested that I call Suffolk Fa mily Carers’ helpline a year ago, I would have said, ‘why on earth would I want to do that?!’. Anyway – I called them today, and a m glad I did. I spoke to a really friendly lady there – told her what had been happening and it was just such a relief to tell someone about it. She listened and it really helped to know that actually there are quite a few people in almost exactly the sa me position as me. I don’t feel like I’m the odd one out. ti n g
o f re pea g ive i n t o e r i t I t to lt... ’ mes ‘So m et i y s e lf. I t ry n ot it’ s s o dif f icu m n ce, bu i m pat i e
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Satu rday 19 Ja nu a ry Went shopping with Jim for new clothes, we were in a department store. I only turned my back for a moment, and Jim had disappeared. I caught up with him just as he reached the top of the escalator. I grabbed Jim’s sleeve to stop him. This startled him and he lurched sideways into a pair of display mannequins and sent them flying with a crash! A store manager appeared (with a security guard!). When I explained the situation she was very understanding. She said her uncle was the sa me. But as I took Jim’s arm to lead him away, he said in a really loud voice, ‘B****y hell, she’s ugly!’ I asked him to be quiet, but he beca me argu mentative and said, ‘Why? She is b****y ugly!’ It may seem funny after the event, but at the time I could have died of embarrassment. Jim’s outbursts make going out so difficult. But he also hates being left at home alone, so very restrictive.
– e wit h it p o c ’t n a c n fa m ily it o r h e l p out o r w o r u o Y ‘ ’t v i s t h e y d o n h a s t h e st ig m a . It s u ppo rt .. nt a l ill n e ss. ’ of m e
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People affected by dementia get left out of conversations, but still know what’s being said.
ily Suf fo lk Fa mli n e Ca re rs H e l pca re rs.org fa m ily www.s uffo lk 679 01473 232 pe n
is o t h e h e lp li n e 4 Fri d a y 9 – o t y a d n o M
Wednesday 16 Ja nu a ry Our world has gradually become quite small. We seldom socialise or go anywhere nowadays. People don’t visit. It seems they can’t cope with how Jim has changed. They say things like ‘I’d rather remember him as he was’ – which I find very hurtful because Jim is still Jim. He still has feelings.
at t h e k o o l e l ‘ Pe op i s a n d t h e n. ’ di a g n o s , n ot t h e pe rs o p ro ble m
And these are people we once thought of as close friends. Jim was always a committed church-goer, but even they don’t visit. I do think Jim has been badly let down.
On the rare occasions that we do see people, Jim gets left out of the conversation. People either talk over him or ignore him. It’s as if he no longer matters. Like people think he is invisible.
ily e m a n lk F e l p li l : o f Suf re rs H f u se fuclu di n gre a rer Ca Lots o tion i n le mentas afa milyt c a
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I didn’t realise that there is so much help and information available – well I suppose why would I? Until all this happened with Jim I didn’t need to. There is quite a lot to take in, and I’m going to make a start my reading the Information pack that they’re sending me. I’ve arranged to call them back later this month. One thing I a m definitely going to have a think about is going along to a support group. That’s something else that’s new – I’ve never been one to join in groups and so on – but I do think that being with other people in a similar situation might help. Certainly not many people round here seem to understand – and I’ve got nothing to lose.
The worst part is that even Jim’s fa mily doesn’t want to know – even his daughter seems too busy to drop by. Perhaps they’re afraid or in denial, or simply can’t be bothered. Maybe it’s a question of ‘will it happen to me?’ We just don’t know. It breaks my heart.
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Su nday 9 Ma rch
get th at really ‘It's th e ba ck up you to ke ep goin g a nd give s you th e will is is th e will to sa y ye s th t.’ rt ou worth while tryi ng to so
Really feeling the lack of sleep! Our day starts around 4a m, when Jim usually wakes up and begins wandering around the house. He appears to have trouble sleeping and has lost sense of time – very often he doesn’t even know what day it is. I’ve taken to buying a daily newspaper, to help Jim keep in touch with the wider world. He appears to enjoy reading. He does like to help in the garden too – well we always used to sort out the bedding plants together and I was a mazed at how he sorted out the seedlings today. It was like the old Jim back again! I’ve noticed that Jim is at his most restless and agitated during the early evenings.
Really feeling the loss of independence; also a sense of bereavement, of losing the Jim I know and love. Sometimes it’s easy to forget that this person who I’m caring for is the sa me man I married. It’s so lonely no longer being able to have a proper conversation. Feel isolated.
I mentioned it to the community nurse. She says Jim’s behaviour is known as ‘sundowning’, and is common a mong dementia sufferers. It can often be helped by physical or mental activity. I’ve begun to take Jim for an early evening walk in the park. Jim doesn’t like change, and often gets anxious outside his environment, but he seems to have warmed to the idea. Our walks appear to occupy his mind, and do seem to have made a difference. Max, the dog comes too, which Jim likes very much! I think Max knows that Jim isn’t well. He sort of makes allowances.
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Carers often feel isolated from their friends and family. They are constantly on call.
Friday 21 Dece mber I always knew that people with dementia lose their memories. But there’s so much more to it than that. Jim doesn’t just forget ‘things’, he forgets their entire context. It makes him so unpredictable.
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If he leaves the house alone, he often loses his way home. I do my best to stop him going out without me, but it’s so difficult. I don’t have eyes in the back of my head! Sometimes it’s like looking after an overgrown toddler. He makes me so angry, and then that makes me feel guilty. It’s a vicious circle. On top of this, Jim is becoming so unreasonable. He forbids me to speak about his illness to anybody - even the children! Says he doesn’t want people feeling sorry for him, or thinking that he’s ‘mentally unwell’. I can understand it on one level - Jim has always been a proud man. But from what I’ve learned we can only expect things to get slowly worse. How on earth can we expect people not to notice ?
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163,000 new cases of dementia occur in England and Wales each year - one every 3.2 minutes. ds
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0845 450 d s.o rg.u k a Monday 31 Ma rch www.cro ss ro e is ea s D s ' r al ei me The social services have put us in touch with Al z h nt e rn at ion 880 I 7981 0 Crossroads, a charitable organisation which 020 . a l z. co. u k provides support for carers. We now have a www trained support worker who takes over for one day a week. It’s been a real lifeline. Crossroads are so flexible and have done all they can to fit in around my schedules.
For the first time in many months I’ve found some time to be ‘myself’. Occasionally I’ ll see friends, read or catch up on correspondence – very often I’ ll just sleep! Bliss! Crossroads also run clubs, which enable Jim to pursue other interests and gives me some time off. The groups have enabled me to learn from others in the sa me situation. It’s a place where people can speak honestly about their feelings without being ed is judged. ‘ W hat you de sperat ely ne
a bit of ti m e to yourse lf… ise People are so open about sharing I do n’t thin k pe op le real it ca n be… their knowledge and experience. ho w wea rin g rd an d it really is ve ry ha It really is such a boost. I kn ew th at ti m e wa s No longer feel so alone. what I actu ally ne ed ed.’
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1 in 3 over 65s will die with some form of dementia.
it i s t o li k e d r a h How n icat e. It’s i n g u h co m mchi n g s o m etsion Su nday 6 Aptil wat t h e t e le v i on n ot rea lly ... Our GP surgery has put us in touch with a wide but fo llo wi n g it support network. It’s been a real lifeline.
Jim and I have become members of the Alzheimer's Society. They provide information and support for people affected by dementia. The Society provides day care and home care support. And just as importantly, for me, they also run befriending services to help people live with the demands of caring.
ty Alz he im er’s Socie H el plin e: 0845 300 0336 g. u k info@a lz he im ers. or g. u k www. a lz he im ers. or
The Society has also helped us organise our financial affairs and power of attorney, etc. Jim has had to take early retirement due to his illness, and it’s been so stressful for me – dealing with the money side, which I’m not used to. But at least now I can stop worrying about the future. The Society produces more than 100 factsheets on dementia-related topics, which are available free of charge online. It’s a mine of information. There is also a telephone helpline, which is open from 8. 30a m to 6. 30pm. Great comfort!
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Monday 10 Dece mber
il u nc o C y ou nt t C k ol i rs Suff m e r F 05 o 0 C u st 800 4 s 8 ines 080 e Hou r m l a n dl c ro Off i h on e f bile s)
I had a very interesting conversation today with a neighbour about what social services do. In Suffolk, they are called Adult and Community Services.
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ia l a fina nc is re e h T e t fo r s o m n e m s s e s as ba s ed o n s e ic v r se pa y a bility t o
I don’t think Jim and I need their help yet, but we might in the future. Apparently it is really easy to get in touch. You call ‘Customer F irst’ and tell them what is happening. They arrange for an assessment – not just for what Jim needs – but also for me as a carer. (Then they talk about what’s available, including access to their database of local services, activities and organisations who can enable a person who may have been isolated or excluded to resu me a full and active role in the community.) I didn’t realise there was such a lot and it is good to know that it will be there when we really need it. They aim to help people to live at home – which is what we want – and what with various aids and adaptation, help at home and respite, I find that quite reassuring.
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It is important to try to continue with activities that people enjoyed before dementia.
Friday 7 Dece mber
Satu rday 19 April
Today worst fears were founded. Went with Jim to GP to get test results - diagnosis not good. They believe Jim has Alzheimer’s disease. Jim seemed to understand when the doctor explained, and took it quite well. Me? Devastated.
I really thought I wasn’t really the sort of person to join groups. I’m not a joiner-in – that’s what I used to say to Jim but it isn’t at all what I’d expected. Becoming involved with Suffolk Fa mily Carers and the Alzheimer's Society group meetings and activities has made a huge difference in my ability to cope. It provides that essential point of hu man contact.
Although I wasn’t surprised when the doctor broke the news (had suspected for at least two years), I couldn’t help shedding a tear for Jim (for us!). It was the shock of knowing for certain, I suppose, and, if I’m honest, I felt relieved, as if a weight had been lifted. We walked home through the town centre. It was late-night Christmas shopping. Fa milies enjoying themselves, carol singers, brightly lit shop windows. Reminded me of the times when we would bring the children. Tried to talk with Jim about my feelings; hoped the festive atmosphere might reawaken something. No success. What have we lost? Feel empty. Jim’s GP has put us in touch with the community nursing service and says she will refer Jim to the social services when things get worse. Apparently they always get worse.
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Traditional gender roles can be an issue for carers. People often have to learn new skills, such as cooking or dealing with household finances...
I’ve recently discovered the ‘Alzheimer’s Talking Point’. It’s an online community for people with dementia, carers, fa mily and friends. If something is worrying me, or even if I just feel the need to communicate, I can go online and chat with like-minded people. It’s so liberating. There is such a lack of understanding by the general public (and even by some professionals) about what dementia means. It’s a breath of fresh air to be able to communicate with people who share my experience.
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Resources for people affected by dementia and their family carers
There are currently 15,000 younger people with dementia in the UK.
Our commitment to equality and diversity Jim and Sally may be fairly typical – but of course everyone is different. Dementia affects people from all walks of life, lesbian and gay people, and people from BME communities. There can also be particular challenges for people already living with another disability. We’re committed to services which start with the individual and their needs. Here are some resources that you may find useful. Lesbian / Gay / Trans Although attitudes – and the law – have changed, isolation can still be an issue for lesbian and gay couples, particularly in rural areas. There can be similar issues for transgendered people.
understanding different lifestyles. Society needs to recognise the needs of older gay men and lesbian women and those caring for a relative, partner or friend with any type of dementia, including Aids-related dementia.
The Alzheimer’s Society runs an LGBT support group – here is what their web-page says,
The Society is trying to do this by through its LGBT Support Group, a telephone helpline service staffed by gay men and by lesbians.These trained and skilled volunteers are able to offer a listening ear.”
“Lesbian, gay, bisexual and transgender (LGBT) people caring for a partner, relative or friend with dementia face many challenges - not only those discussed on other pages of this site, but possibly many more. For example, they may have to 'come out' to many professionals - doctors, social workers, nursing home staff - who have become involved in what may previously have been a very private relationship. Professionals do not always understand LGBT lifestyles and some may even be judgmental when faced with scenes of affection! Caring for a person with dementia can cause feelings of isolation. This can be exacerbated by people not
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If you would like to talk to someone, phone: Roger: 01843 220932 Patricia: 07973 916335 Bruce: 01865 847471 Email: gaycarers@alzheimers.org.uk The web-page is at www.alzheimers.org.uk > about dementia > caring for a person with dementia > gay carers The network publishes a newsletter that you can also download from the website.
Tu esday 12 Ju ne Went with Jim to visit specialist .
e nt a l M k l o f f Su e rs hi p n t r a P h H ea lt u st N H S Tr h s. u k n . p h m s . www
We spoke with the consultant for some time. She asked lots of questions some were difficult for Jim – but the consultant was so kind – when Jim couldn’t remember she just moved on. Very ‘matter of fact’ and it so it wasn’t as bad as I thought and I think I was more bothered than Jim! I’d also prepared a list of our questions and concerns in advance, which I found very helpful. Jim asked outright whether he might be suffering from Alzheimer’s disease. The consultant said there could be many reasons for Jim’s symptoms, including depression and stress, but other causes such as dementia could not be ruled out. They did some behavioural and mental tests. Also gave Jim a brain scan. No immediate evidence of anything sinister such as a tu mour – relieved to say! But they said it could take 6-12 months of monitoring before a diagnosis can be made. I can’t believe this is happening. It’s not as though he’s old. We always talked about how much we would enjoy retirement.
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Making a diagnosis of dementia is often difficult − particularly in the early stages.
Wednesday 16 May Took some cajoling, but Jim finally agreed to visit his GP. We went to the surgery together. The doctor was very patient and understanding. He spent some time talking with us about our worries, and asked Jim some questions designed to test his thinking and memory. He also gave Jim a physical exa mination and arranged for blood and urine tests to be made, to identify any possible conditions that may be causing his symptoms. On the doctor’s advice, we agreed that Jim should be referred to a specialist for a detailed assessment. Jim asked the doctor how long it would take to make a diagnosis. Apparently it's very hard to say. It’s all very distressing, but I suppose we just have to face it and get on with it.
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er b m e o rs m e R Doct e nt tm ! n i o a pp Tod a y 2p m
Black and minority ethnic communities Did you know that Suffolk Family Carers have an Inclusion and Diversity project that works specifically with family carers from BME communities? Suffolk Family Carers aims to provide an inclusive service that meets the diverse needs of all family carers living in Suffolk. Evidence both nationally and from our own research identifies the importance of recognising family carers’ cultural, religious and language needs. This project aims to • identify these needs in Suffolk’s BME communities • raise awareness within Suffolk Family Carers and with statutory, voluntary, private and community organisations • act as a resource for family carers and professionals • promote the involvement of BME family carers in consultation and training, and • find and support unidentified family carers from BME group You can contact then via the www.suffolkfamilycarer.org website or the helpline 01473 232679 Mon to Fri 9am – 4pm Friends of African Caribbean Carers & Sufferers of Dementia Is a London-based national charity that has useful information on its website which is at www.faccsd.org
Crossroads A Crossroads service is about giving time - improving the lives of carers by giving them a break from their caring responsibilities. Our aim is to provide a reliable, tailored service, for each carer and the person they care for. We have schemes in most parts of England and Wales, which provide a range of services. Every scheme provides practical support where and when it is most needed - usually in the home. A trained Carer Support Worker will take over from the carer to give them 'time to be themselves'. We talk to the carers about how often they would like us to visit, how long the visit should be and at what time they would like our support provided. They then have 'time' to use as they wish - to see friends, keep appointments, study, read or even just to sleep. Caring for Carers West Suffolk Crossroads Telephone: 01284 748811 South East Suffolk Crossroads Telephone: 01473 730455 www.crossroads.org.uk/south east suffolk Waveney Crossroads Telephone: 01502 574526 www.crossroads.org.uk/waveney
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There are 700,000 people living with dementia in the UK today, a number forecast to double within a generation.
Tu esday 29 Ma rch SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
Something isn’t right. I’m worried about Jim. His memory lapses are becoming more frequent (forgot twice last week to meet as arranged!). Also struggles to find the right words, sometimes to the point where he simply gives up trying and storms out of the room in frustration. Occasionally has no recollection of events – e.g. our trip to London last weekend! (?) Jim’s never been good with remembering people’s na mes, (neither have I for that matter) but today he forgot the na me of his book keeper – he’s worked with him for fifteen years! Not good. I’m really concerned for Jim’s health. But if I attempt to raise the issue with him, he just blusters and becomes angry. He refuses to talk about it. Says I’m blowing things out of proportion. Not so sure.
SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
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„Niniejsza broszura zawiera wyjaśnienia, co może przydarzyć się osobom, które zachorują na demencję lub opiekują się kimś cierpiącym na tę chorobę. Można tu znaleźć informacje na temat dostępnej pomocy. Jeśli chcieliby Państwo otrzymać jakiekolwiek z tych informacji w swoim języku ojczystym, prosimy o skontaktowanie się z nami pod numerem 0800 585544."
Everything in Sally's diary is based on a real event that has happened to someone living in Suffolk. We would like to thank all of the people living with dementia in Suffolk who shared their experiences and whose lives are woven into these diaries. The diaries do not make for comfortable reading. Dementia can be cruel. But the people we spoke to told us clearly that they did not want us to pretend it was any different. Dementia can't be ignored and, as one of the people living with the condition told us, we've all got to learn to respect it, and the people affected by it. It is important to tell uncomfortable truths - but it's also important to recognise that there is a lot of support available - and that some ways of coping are more effective than others. The people we talked to spoke warmly of the kindness and support that they had received from many local services, from their family doctors, and from Suffolk Mental Health Partnership NHS Trust's own staff. We would like to thank 'User Views' for their help in carrying out the interviews. We would also particularly like to thank Suffolk Family Carers, Suffolk Alzheimer's Society, Suffolk Age Concern, Suffolk User Forum, and Suffolk County Council for their help in this project. I would also like to pay tribute to Gabriel Tamaya, Public Benefit Officer with SMHPT, for his commitment and hard work in bringing this project to fruition.
Wszystkie osoby w wieku co najmniej 12 lat mieszkające w Anglii są upoważnione do ubiegania się o członkostwo w organizacji typu foundation trust, takiej jak nasza.. Pragniemy, aby jej członkowie byli tak różnorodni, jak społeczność, której służymy. Jeśli chcieliby Państwo uzyskać dodatkowe informacje na temat tego, co oznacza takie członkostwo i jak złożyć podanie w języku polskim, prosimy o skontaktowanie się z biurem ds. członkostwa pod poniższym adresem. SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
“O presente folheto explica o que pode acontecer às pessoas quando passam a sofrer de demência ou cuidam de alguém com demência. Explica ainda quais os serviços que se encontram disponíveis para prestar apoio a essas pessoas. Caso pretenda obter essas informações no seu idioma, entre em contacto através do número 0800 585544” Todos aqueles que vivem em Inglaterra com 12 ou mais anos de idade estão habilitados a candidatar-se à associação na fundação do nosso Fundo. Gostaríamos que os nossos associados fossem de origens tão diversas quanto a população que servimos. Se pretender obter mais informações sobre o significado da associação e como candidatar-se em português, entre em contacto com o departamento de associação através do endereço abaixo apresentado. SMHPT Foundation Trust Membership Office St Clements, Freepost RRKY-AAKL-UEUS, Suffolk Support Services, PO BOX 170, IP3 8LS 01473 329148
Robert Nesbitt Director of Community Engagement Suffolk Mental Health Partnership NHS Trust July 2009
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Images © Fotolia VI - Fotolia.com
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What it’s like to care for someone with dementia - a carer’s diary