29/6/09
12:46:15
Images © Fotolia VI - Fotolia.com
jim-cover-p1-p20.pdf
s st o ry Ji m ’What it’s like to live with dementia - a personal diary
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Every individual, every couple, every family, living with dementia has a different, personal, experience. Jim’s story isn’t a real diary of course. The events in Jim’s diary aren’t meant to be typical, because there is no such thing as ‘typical’. Sometimes the condition progresses quickly, sometimes slowly. But the feelings described are quite common – shock, grief, tenderness, confusion, sadness – and moments of humour. The people living with dementia who so kindly told us about their lives were clear that they didn’t want us to sugar-coat their experiences. But they did talk about the ways that they have used to cope. What helps? Well there are some tips: staying active, using routines where possible, not getting into arguments [easier said than done], using humour and ‘going with the flow’ – and we have included these in the diaries. But there are no quick fixes. Dementia can put an enormous strain on even the strongest relationships. But the people we spoke to talked positively about the support that they have received from their family, communities, services and from other people living with the condition. If there is one message which does apply to everyone living with dementia it’s ‘don’t struggle on alone’. Use those supports – and it isn’t all doom and gloom. If there is one message that applies to everyone else, it is that we can all make a difference. We all need to take time to understand the condition. We all need to show patience and to overcome our embarrassment to say hello, keep in touch, and make sure that people living with dementia don’t get left out of our communities.
„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." 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
We can all make a difference by learning respect for dementia. Robert Nesbitt Director of Community Engagement Suffolk Mental Health Partnership NHS Trust July 2009
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jim-p3-p18.pdf
29/6/09
12:47:22
‘My brain just doesn't seem to click a lot of the time and I have trouble remembering things...’
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 keep forgetting things. Phone nu mbers that I’ve known for years, na mes of acquaintances, fa miliar words – they just seem to evaporate when I need them. Also frequently feel confused, especially when I’m tired. Sometimes lose track of what I’m supposed to be doing – thoughts become ju mbled. If I give it time and try to relax, things usually come back to me. I have good days and bad days. Sometimes don’t realise I’ve forgotten something until Sally reminds me. It’s beginning to drive her to distraction. She says I should get help, but I find it so difficult to speak about it. gs
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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in I know I should see a doctor. It isn’t fair on nt t h k e y s, a t r o i m p on e y, on e Sally to go on like this. But if I’m honest K e e pch a s m a n d p h a m e s u t a cl e s t h e s y s I’m scared of where it may lead. I just keep s pe c m be rs i n ou a lwa n u ce, s o y h e re t o hoping that I’ ll wake up one morning and my p l a n o w w t h e m. k ind memory will have returned to normal. f
3
jim-p4-p17.pdf
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Wednesday 16 May
e loo k s O K, g w ro n g n o e m o s if ‘Eve n ve s o m et hino n e o f a h n a c y e th T h at’s be e n . m e h t h it w t hin g s.’ t h e h a rd e st
F inally su mmoned the will to visit my GP. Sally offered to come with me, which was a comfort. I’d been trying to put this day off, hoping the symptoms might go away of their own accord, but if anything they’re getting worse. It takes me so long to do things ordinary things. I know people around me are beginning to notice too. They don’t say anything, but I can tell they’re concerned. It’s embarrassing The doctor was very patient. He asked me lots of questions – Sally too. Forgetfulness is the hardest thing. I found it so frustrating just explaining to the doctor how I felt – it was like running in glue. But he seemed to understand. He exa mined me and ran some tests. He’s also referring me to specialist. Not sure if this is good news ? My worry is that unless I can get this thing in check I won’t be able to take care of things. And how it will affect Sally, of course. Fear the worst.
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
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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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jim-p5-p16.pdf
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Resources for people affected by dementia and their family carers 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.
se th ey ca n ’t d ea l u a ec b s d n ie fr r ‘Y ou lo se y ou lik e “ I’ d rath er s g in th y sa ey h T wit h it. h e wa s” – it’s re m e m ber hi m a s u se th e pe rs on is ve ry h u rtfu l beca ch u rch vi sit. ’ Tu esday 12 Ju ne th e st ill h ere. N ot even Visit to consultant. More tests - and a brain scan! The consultant said memory loss can be the result of many things, including stress and depression. She couldn’t rule out Alzheimer’s or some other form of dementia (which is what I’d feared). Also could possibly be a brain tu mour. I’m not sure which is worse? At least a tu mour is operable, I suppose – reversible, which can’t be said of dementia! The consultant was very helpful. Also gave me some coping strategies. She said that it’s best if I try to stick to a routine to give structure to the day, to help me remember what I’m supposed to be doing. Try to do one thing at a time - tackling too many things at once can be confusing. I know exactly what she means! I told her that it wasn’t just about forgetting things. I thought this kind of thing only happened to “really” old people. Seems a crazy thing to happen at my age. Not sure that it’s really sunk in yet. May have to wait a while for a diagnosis. The doctor wants to monitor my progress.
5
jim-p6-p15.pdf
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ood that with ‘It’s uni ma gin able really. You see I always und erst but the re’s dem enti a people lose the ir me mory. We ll the y do, t.’ load s more to it tha n tha
Friday 7 Dece mber
Satu rday 19 April
Went with Sally to GP to get test results. I’m told that I’m suffering from a type of dementia. It’s a physical disease. People with dementia get muddled because their brain cells aren’t working properly. The doctor was very kind and told us that there is a lot of support available now. I didn’t take much of it in. Too shocked. Apparently there are some tablets that might help a bit – but there isn’t a cure.
Becoming part of a group has changed our lives for the better. A major problem for me was the long periods of isolation – I felt like I’d lost the art of conversation. It was lonely.
When the doctor explained, Sally didn’t take it very well. She held my hand and began to sob. The doctor passed her a tissue. Once your memory has gone, there’s nothing to replace it. I feel useless, will I be a burden? Another thing is that it is very different for different people. There’s no rhyme or reason as to why it affects one person one way, and another a different way. I suppose the brain is a complicated thing. But it is frustrating that no-one can give me certainty about what will happen. Will I become aggressive? Will I have to go into a home? Frightening.
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Organisations such as Alzheimer’s Society and Crossroads provide practical support for sufferers of dementia, their families and carers.
It’s was no less demanding for Sally. Caring is a 24/ 7 occupation a way of life, sometimes to the point where all else is shut out. It’s easy to think that it’s all about the sufferer, but the life of a carer is no less affected. How many carers get as much as a hug or a hold of the hand? It’s good for Sally to know that the support is there when she needs it. There is no substitute for fa mily, love, affection, memories, of course. But all around me are people who treat me with compassion rather than exclusion. It isn’t going to make my illness go away or make it get any better. But there is still light at the end of the tunnel. It feels like I’m peering out through the dust of the wreckage. At the moment, it’s only the faintest glimmer, and if I focus on it, it doesn't get any brighter. But neither does it go away. It gives me a reason to carry on.
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Su nday 6 April
g fo r h e lp – in k s a f o id ra ‘Do n ’t be af t y ou ’re n ot t h e a cce pt t h a h o ca n loo k aft e r o n ly o n e w ’ e. y ou r lo ved o n
We’ve received a lot of help from the Alzheimer’s Society. I know that it has been a great source of support for Sally in particular. She seems happier, less fraught. She’s been able to meet other people in the sa me situation as herself, and I think that it’s made a big difference. Through meeting others with the sa me illness as myself I’ve discovered some useful strategies for coping with everyday life. Post-it notes and 'to do' lists are good – strategically positioned around the house. I’ve also started keeping a diary, which was something I’d abandoned since I’d stopped running the business. I’m learning not to be embarrassed if I forget something. If the right word or piece of information escapes me I don't try too hard. I’ve found this stops me from becoming so frustrated and angry. Often when I stop trying the missing fragment will just pop into my head. I’ve also tried breaking up my days into bite-sized chunks to make them more manageable.
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It helps to share things out. Not everything can be done by your spouse. They need a break too.
Friday 21 Dece mber Sally gets cross when I venture out alone. She says I’ ll get lost and won’t be able to find my way home. I tell her she worries too much! I enjoy going to the library; browsing in bookshops; getting a haircut – just normal, independent things. But if I can’t leave the house without Sally I feel like a prisoner. It’s like having a constant chaperone – makes me feel so inadequate. Hate people knowing or treating me like a fool! Sally put a child safety gate across the stairs. I took it down! I try to do small jobs like washing up or peeling vegetables, but Sally becomes impatient. She doesn’t say anything, but I can tell she’s biting her lip. But I need to do things in my own time, always in my own time. She doesn’t understand. When Sally speaks in a loud voice it echoes around my head and sometimes gets lost altogether. She complains when I don’t answer her, but the question has departed even before I’m able to form an answer – just foggy.
7
jim-p8-p13.pdf
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12:50:12
entia on te lev ision, m de th wi ne eo m so of e ur ‘W he n you se e a pict rso n, sh uf fli ng alon g. pe old y er dd do a ys wa al .’ th ey are It’s ne ve r a pe rso n m y ag e..
Wednesday 16 Ja nu a ry
Monday 31 Ma rch
People seem to have stopped visiting us. Occasionally someone will drop by, but more often than not they seem ill at ease and can’t wait to be on their way. Sally takes it very badly. I feel somehow responsible.
Have started going to a club. When I’m at home people keep away because they don’t understand. They don’t know what to say, they’re frightened of the unknown. But here it’s different. We’re all in the sa me boat! It’s good to see other people, to talk without fear of saying the wrong thing.
I still enjoy socialising, but I can’t keep up with the conversation so I stay back. When too many people speak at once it just becomes a lot of noise – it’s better if people speak to me one at a time. I know people find me embarrassing. Often they’ ll talk about things that they think I know about, but when they realise I have no recollection I can see their eyes glaze over and they switch off. Sally says that I repeat myself over and over again. It’s odd, because I’ve no idea that I’m doing it. People forget that I wasn’t always like this. I can still join in the conversation if people ask me about the old days – like when Sally and I were courting. I can still give my opinion on most things, actually, if people take the trouble to ask. But if people ask me lots of questions about what I did at the weekend then that does flu mmox me. That’s when they turn to talk to Sally and I get left out. I feel like I’m missing a lot.
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‘Join a carer’s group – they are hugely useful to share ideas and tips and to meet other people in the sa me situation.’
We socialise, listen to music and go on outings to places of interest. I’ve also been doing some drawings. It gives me a purpose. I can do something, and then at the end of the day I can say ‘Well I’ve done that’. I’ve got something to show for it. It’s so important to try to continue with the activities that you enjoyed before dementia, even if it takes longer to see results.
We need to get our finances in order!
The Alzheimer’s Society have some useful tips
www.alzheimers.org.uk Helpline 0845 300 0336
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jim-p9-p12.pdf
29/6/09
12:50:43
y. I’ve al rea dy switched wa e m sa e th e liv r ge lon no ‘Y ou ca n a ce rta in exte nt of f to so m e wo rldly thin gs. Toa dif fe rent pa rallel un ive rse…’ I se em to thin k I live in
Many participants talk about “sundowning”, a reference to the restlessness and agitation often felt by people with dementia during the early evenings...
Su nday 9 Ma rch Sally is always so busy around the house. Sometimes when I get up in the mornings it seems as if she has just gone to bed.
o ll e g e R oy a l C i at ri st s o f Ps y chy ch. a c. u k
Su nday 20 Ja nu a ry
s www. rcp lots of g ood
t T h e re ’s at ion a b–oue ve n m r e o r i nf e nt i a h e n g u a g e s! d e mif fe re nt l a in d
I like to get up and about as soon as I’m awake – keep busy around the house, tidying, etc. It makes me feel that I’m achieving something with my day, keeps me from feeling too depressed. Sally finds my routine wearing. She says I rise too early, that I make too much noise. But she also complains that I’m unmotivated. Don’t know how to please her!
What a great day we had today! Sally’s daughter-in-law ca me round with the little ones. They are so funny. We laughed and laughed playing in the garden. After lunch we got the old photo albu m out and looked at the pictures. Sally was a beautiful bride. I was a handsome chap, if I say so myself. We took a walk down the lane after lunch. Weather was lovely. I’m tired but happy. Sally is my rock. Will sleep well tonight.
I told Sally I don’t know what time of day it is. She has since put clocks in all the rooms, and has bought me a watch with a 24-hour display. At least I’ ll know what end of the day it is! Going on the internet is also a good way of keeping track of time.
Age Conce rn Engla nd www.ag econcern.org.uk
The ending of the day always comes as something of a shock to me. It makes me feel agitated, anxious. Just lately al we’ve been taking the dog for an early evening walk. Suf fo lk M e nt ip rs h I like the routine. The smells bring back memories, H ea lt h Pa rt n e and it also helps me sleep better. NHS Tru st
w.co. u www.ify ou k n e
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0800 009 966
k
UK s r e r Ca 7777 8 0 8 rg 0808 ca re rs. o uk rg i nfo@ a re rs u k. o .c www
9
jim-p10-p11.pdf
29/6/09
12:51:16
fo r pe op le to ta lk ‘It’s be en a diff icult thin gs he lped with it be in g m ore about, but it ha rs. ’ Te rry Prat ch ett an d ot he e lik le op pe by d se ici bl pu
‘I wou ld like to say that with peop le with dem entia, you can have fun. With mu m, we had an a mazing a mou nt of fun, a serious a mou nt of fun...’
Monday 4 Fe bru a ry
Thu rsday 28 Fe bru a ry
How hard it is to communicate. It’s like watching something on the television but not really following it. I’m not interested in anything anymore. Why does Sally keep telling me the sa me things over and over again?
The other day Sally found me searching the house for my newspaper. We searched high and low but still couldn’t find it. Later that day, Sally found it in the fridge! I do some very stupid things, but at least they keep us a mused. Y es, we must still laugh at ourselves. It makes the days a lot easier to deal with - far better to laugh than cry.
Sometimes I’ ll catch myself wandering around the house, totally lost. It’s as if I’ve intruded suddenly upon my own existence. It’s so disorientating. Then just as abruptly I’ ll lapse again into absolute forgetfulness. Where a m I? What a m I doing? It begins like a little tapping at the recesses of my mind something a little unsettling, ill at ease. And then the tapping gets louder, until it becomes so violent that it seems as if the whole world is shaking around me, to the core of my being. From this point on, it’s just one explosion after the next – CRASH! BANG! CRASH! BANG! Debris is flying everywhere. If only people knew how it feels inside.
10
It’s the recent memories that present the problem – whereas the distant past has so far remained intact. It’s strange, because I’m able to recall the smallest details from life in my younger days – it’s like they happened yesterday. I like to talk about the past. I don’t think many people understand how important these old memories are to me; they give me something to cling to as present r’s Society e m i e h z l A day reality becomes harder to comprehend. H e l p li n e:
0336 0 0 3 5 4 08 rg.u k h e i m e rs.o
Sally and I have a ‘memory box’: photos, info@a lz .u k e i m e rs.o rg postcards, letters, news cuttings – they all go in. www. a lz h We’ ll go through them together. Sometimes we’ ll spend a whole evening just reminiscing. It’s marvellous.
11
jim-p10-p11.pdf
29/6/09
12:51:16
fo r pe op le to ta lk ‘It’s be en a diff icult thin gs he lped with it be in g m ore about, but it ha rs. ’ Te rry Prat ch ett an d ot he e lik le op pe by d se ici bl pu
‘I wou ld like to say that with peop le with dem entia, you can have fun. With mu m, we had an a mazing a mou nt of fun, a serious a mou nt of fun...’
Monday 4 Fe bru a ry
Thu rsday 28 Fe bru a ry
How hard it is to communicate. It’s like watching something on the television but not really following it. I’m not interested in anything anymore. Why does Sally keep telling me the sa me things over and over again?
The other day Sally found me searching the house for my newspaper. We searched high and low but still couldn’t find it. Later that day, Sally found it in the fridge! I do some very stupid things, but at least they keep us a mused. Y es, we must still laugh at ourselves. It makes the days a lot easier to deal with - far better to laugh than cry.
Sometimes I’ ll catch myself wandering around the house, totally lost. It’s as if I’ve intruded suddenly upon my own existence. It’s so disorientating. Then just as abruptly I’ ll lapse again into absolute forgetfulness. Where a m I? What a m I doing? It begins like a little tapping at the recesses of my mind something a little unsettling, ill at ease. And then the tapping gets louder, until it becomes so violent that it seems as if the whole world is shaking around me, to the core of my being. From this point on, it’s just one explosion after the next – CRASH! BANG! CRASH! BANG! Debris is flying everywhere. If only people knew how it feels inside.
10
It’s the recent memories that present the problem – whereas the distant past has so far remained intact. It’s strange, because I’m able to recall the smallest details from life in my younger days – it’s like they happened yesterday. I like to talk about the past. I don’t think many people understand how important these old memories are to me; they give me something to cling to as present r’s Society e m i e h z l A day reality becomes harder to comprehend. H e l p li n e:
0336 0 0 3 5 4 08 rg.u k h e i m e rs.o
Sally and I have a ‘memory box’: photos, info@a lz .u k e i m e rs.o rg postcards, letters, news cuttings – they all go in. www. a lz h We’ ll go through them together. Sometimes we’ ll spend a whole evening just reminiscing. It’s marvellous.
11
jim-p9-p12.pdf
29/6/09
12:50:43
y. I’ve al rea dy switched wa e m sa e th e liv r ge lon no ‘Y ou ca n a ce rta in exte nt of f to so m e wo rldly thin gs. Toa dif fe rent pa rallel un ive rse…’ I se em to thin k I live in
Many participants talk about “sundowning”, a reference to the restlessness and agitation often felt by people with dementia during the early evenings...
Su nday 9 Ma rch Sally is always so busy around the house. Sometimes when I get up in the mornings it seems as if she has just gone to bed.
o ll e g e R oy a l C i at ri st s o f Ps y chy ch. a c. u k
Su nday 20 Ja nu a ry
s www. rcp lots of g ood
t T h e re ’s at ion a b–oue ve n m r e o r i nf e nt i a h e n g u a g e s! d e mif fe re nt l a in d
I like to get up and about as soon as I’m awake – keep busy around the house, tidying, etc. It makes me feel that I’m achieving something with my day, keeps me from feeling too depressed. Sally finds my routine wearing. She says I rise too early, that I make too much noise. But she also complains that I’m unmotivated. Don’t know how to please her!
What a great day we had today! Sally’s daughter-in-law ca me round with the little ones. They are so funny. We laughed and laughed playing in the garden. After lunch we got the old photo albu m out and looked at the pictures. Sally was a beautiful bride. I was a handsome chap, if I say so myself. We took a walk down the lane after lunch. Weather was lovely. I’m tired but happy. Sally is my rock. Will sleep well tonight.
I told Sally I don’t know what time of day it is. She has since put clocks in all the rooms, and has bought me a watch with a 24-hour display. At least I’ ll know what end of the day it is! Going on the internet is also a good way of keeping track of time.
Age Conce rn Engla nd www.ag econcern.org.uk
The ending of the day always comes as something of a shock to me. It makes me feel agitated, anxious. Just lately al we’ve been taking the dog for an early evening walk. Suf fo lk M e nt ip rs h I like the routine. The smells bring back memories, H ea lt h Pa rt n e and it also helps me sleep better. NHS Tru st
w.co. u www.ify ou k n e
12
0800 009 966
k
UK s r e r Ca 7777 8 0 8 rg 0808 ca re rs. o uk rg i nfo@ a re rs u k. o .c www
9
jim-p8-p13.pdf
29/6/09
12:50:12
entia on te lev ision, m de th wi ne eo m so of e ur ‘W he n you se e a pict rso n, sh uf fli ng alon g. pe old y er dd do a ys wa al .’ th ey are It’s ne ve r a pe rso n m y ag e..
Wednesday 16 Ja nu a ry
Monday 31 Ma rch
People seem to have stopped visiting us. Occasionally someone will drop by, but more often than not they seem ill at ease and can’t wait to be on their way. Sally takes it very badly. I feel somehow responsible.
Have started going to a club. When I’m at home people keep away because they don’t understand. They don’t know what to say, they’re frightened of the unknown. But here it’s different. We’re all in the sa me boat! It’s good to see other people, to talk without fear of saying the wrong thing.
I still enjoy socialising, but I can’t keep up with the conversation so I stay back. When too many people speak at once it just becomes a lot of noise – it’s better if people speak to me one at a time. I know people find me embarrassing. Often they’ ll talk about things that they think I know about, but when they realise I have no recollection I can see their eyes glaze over and they switch off. Sally says that I repeat myself over and over again. It’s odd, because I’ve no idea that I’m doing it. People forget that I wasn’t always like this. I can still join in the conversation if people ask me about the old days – like when Sally and I were courting. I can still give my opinion on most things, actually, if people take the trouble to ask. But if people ask me lots of questions about what I did at the weekend then that does flu mmox me. That’s when they turn to talk to Sally and I get left out. I feel like I’m missing a lot.
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‘Join a carer’s group – they are hugely useful to share ideas and tips and to meet other people in the sa me situation.’
We socialise, listen to music and go on outings to places of interest. I’ve also been doing some drawings. It gives me a purpose. I can do something, and then at the end of the day I can say ‘Well I’ve done that’. I’ve got something to show for it. It’s so important to try to continue with the activities that you enjoyed before dementia, even if it takes longer to see results.
We need to get our finances in order!
The Alzheimer’s Society have some useful tips
www.alzheimers.org.uk Helpline 0845 300 0336
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Su nday 6 April
g fo r h e lp – in k s a f o id ra ‘Do n ’t be af t y ou ’re n ot t h e a cce pt t h a h o ca n loo k aft e r o n ly o n e w ’ e. y ou r lo ved o n
We’ve received a lot of help from the Alzheimer’s Society. I know that it has been a great source of support for Sally in particular. She seems happier, less fraught. She’s been able to meet other people in the sa me situation as herself, and I think that it’s made a big difference. Through meeting others with the sa me illness as myself I’ve discovered some useful strategies for coping with everyday life. Post-it notes and 'to do' lists are good – strategically positioned around the house. I’ve also started keeping a diary, which was something I’d abandoned since I’d stopped running the business. I’m learning not to be embarrassed if I forget something. If the right word or piece of information escapes me I don't try too hard. I’ve found this stops me from becoming so frustrated and angry. Often when I stop trying the missing fragment will just pop into my head. I’ve also tried breaking up my days into bite-sized chunks to make them more manageable.
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It helps to share things out. Not everything can be done by your spouse. They need a break too.
Friday 21 Dece mber Sally gets cross when I venture out alone. She says I’ ll get lost and won’t be able to find my way home. I tell her she worries too much! I enjoy going to the library; browsing in bookshops; getting a haircut – just normal, independent things. But if I can’t leave the house without Sally I feel like a prisoner. It’s like having a constant chaperone – makes me feel so inadequate. Hate people knowing or treating me like a fool! Sally put a child safety gate across the stairs. I took it down! I try to do small jobs like washing up or peeling vegetables, but Sally becomes impatient. She doesn’t say anything, but I can tell she’s biting her lip. But I need to do things in my own time, always in my own time. She doesn’t understand. When Sally speaks in a loud voice it echoes around my head and sometimes gets lost altogether. She complains when I don’t answer her, but the question has departed even before I’m able to form an answer – just foggy.
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ood that with ‘It’s uni ma gin able really. You see I always und erst but the re’s dem enti a people lose the ir me mory. We ll the y do, t.’ load s more to it tha n tha
Friday 7 Dece mber
Satu rday 19 April
Went with Sally to GP to get test results. I’m told that I’m suffering from a type of dementia. It’s a physical disease. People with dementia get muddled because their brain cells aren’t working properly. The doctor was very kind and told us that there is a lot of support available now. I didn’t take much of it in. Too shocked. Apparently there are some tablets that might help a bit – but there isn’t a cure.
Becoming part of a group has changed our lives for the better. A major problem for me was the long periods of isolation – I felt like I’d lost the art of conversation. It was lonely.
When the doctor explained, Sally didn’t take it very well. She held my hand and began to sob. The doctor passed her a tissue. Once your memory has gone, there’s nothing to replace it. I feel useless, will I be a burden? Another thing is that it is very different for different people. There’s no rhyme or reason as to why it affects one person one way, and another a different way. I suppose the brain is a complicated thing. But it is frustrating that no-one can give me certainty about what will happen. Will I become aggressive? Will I have to go into a home? Frightening.
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Organisations such as Alzheimer’s Society and Crossroads provide practical support for sufferers of dementia, their families and carers.
It’s was no less demanding for Sally. Caring is a 24/ 7 occupation a way of life, sometimes to the point where all else is shut out. It’s easy to think that it’s all about the sufferer, but the life of a carer is no less affected. How many carers get as much as a hug or a hold of the hand? It’s good for Sally to know that the support is there when she needs it. There is no substitute for fa mily, love, affection, memories, of course. But all around me are people who treat me with compassion rather than exclusion. It isn’t going to make my illness go away or make it get any better. But there is still light at the end of the tunnel. It feels like I’m peering out through the dust of the wreckage. At the moment, it’s only the faintest glimmer, and if I focus on it, it doesn't get any brighter. But neither does it go away. It gives me a reason to carry on.
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Resources for people affected by dementia and their family carers 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.
se th ey ca n ’t d ea l u a ec b s d n ie fr r ‘Y ou lo se y ou lik e “ I’ d rath er s g in th y sa ey h T wit h it. h e wa s” – it’s re m e m ber hi m a s u se th e pe rs on is ve ry h u rtfu l beca ch u rch vi sit. ’ Tu esday 12 Ju ne th e st ill h ere. N ot even Visit to consultant. More tests - and a brain scan! The consultant said memory loss can be the result of many things, including stress and depression. She couldn’t rule out Alzheimer’s or some other form of dementia (which is what I’d feared). Also could possibly be a brain tu mour. I’m not sure which is worse? At least a tu mour is operable, I suppose – reversible, which can’t be said of dementia! The consultant was very helpful. Also gave me some coping strategies. She said that it’s best if I try to stick to a routine to give structure to the day, to help me remember what I’m supposed to be doing. Try to do one thing at a time - tackling too many things at once can be confusing. I know exactly what she means! I told her that it wasn’t just about forgetting things. I thought this kind of thing only happened to “really” old people. Seems a crazy thing to happen at my age. Not sure that it’s really sunk in yet. May have to wait a while for a diagnosis. The doctor wants to monitor my progress.
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Wednesday 16 May
e loo k s O K, g w ro n g n o e m o s if ‘Eve n ve s o m et hino n e o f a h n a c y e th T h at’s be e n . m e h t h it w t hin g s.’ t h e h a rd e st
F inally su mmoned the will to visit my GP. Sally offered to come with me, which was a comfort. I’d been trying to put this day off, hoping the symptoms might go away of their own accord, but if anything they’re getting worse. It takes me so long to do things ordinary things. I know people around me are beginning to notice too. They don’t say anything, but I can tell they’re concerned. It’s embarrassing The doctor was very patient. He asked me lots of questions – Sally too. Forgetfulness is the hardest thing. I found it so frustrating just explaining to the doctor how I felt – it was like running in glue. But he seemed to understand. He exa mined me and ran some tests. He’s also referring me to specialist. Not sure if this is good news ? My worry is that unless I can get this thing in check I won’t be able to take care of things. And how it will affect Sally, of course. Fear the worst.
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
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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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‘My brain just doesn't seem to click a lot of the time and I have trouble remembering things...’
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 keep forgetting things. Phone nu mbers that I’ve known for years, na mes of acquaintances, fa miliar words – they just seem to evaporate when I need them. Also frequently feel confused, especially when I’m tired. Sometimes lose track of what I’m supposed to be doing – thoughts become ju mbled. If I give it time and try to relax, things usually come back to me. I have good days and bad days. Sometimes don’t realise I’ve forgotten something until Sally reminds me. It’s beginning to drive her to distraction. She says I should get help, but I find it so difficult to speak about it. gs
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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in I know I should see a doctor. It isn’t fair on nt t h k e y s, a t r o i m p on e y, on e Sally to go on like this. But if I’m honest K e e pch a s m a n d p h a m e s u t a cl e s t h e s y s I’m scared of where it may lead. I just keep s pe c m be rs i n ou a lwa n u ce, s o y h e re t o hoping that I’ ll wake up one morning and my p l a n o w w t h e m. k ind memory will have returned to normal. f
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Every individual, every couple, every family, living with dementia has a different, personal, experience. Jim’s story isn’t a real diary of course. The events in Jim’s diary aren’t meant to be typical, because there is no such thing as ‘typical’. Sometimes the condition progresses quickly, sometimes slowly. But the feelings described are quite common – shock, grief, tenderness, confusion, sadness – and moments of humour. The people living with dementia who so kindly told us about their lives were clear that they didn’t want us to sugar-coat their experiences. But they did talk about the ways that they have used to cope. What helps? Well there are some tips: staying active, using routines where possible, not getting into arguments [easier said than done], using humour and ‘going with the flow’ – and we have included these in the diaries. But there are no quick fixes. Dementia can put an enormous strain on even the strongest relationships. But the people we spoke to talked positively about the support that they have received from their family, communities, services and from other people living with the condition. If there is one message which does apply to everyone living with dementia it’s ‘don’t struggle on alone’. Use those supports – and it isn’t all doom and gloom. If there is one message that applies to everyone else, it is that we can all make a difference. We all need to take time to understand the condition. We all need to show patience and to overcome our embarrassment to say hello, keep in touch, and make sure that people living with dementia don’t get left out of our communities.
„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." 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
We can all make a difference by learning respect for dementia. Robert Nesbitt Director of Community Engagement Suffolk Mental Health Partnership NHS Trust July 2009
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s st o ry Ji m ’What it’s like to live with dementia - a personal diary