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Madge s story, Madge s person centred review took place in September Madge Sally and Ian two of her. children Barbara her neighbour Josie and Tracey health professionals attended the review. which Gill facilitated, Madge lives on the Fylde Coast Often described as being full of fun and a great teller of stories. she is comfortable talking with anybody She has three children Sally and Ian live nearby. with their partners Stephen and Jane Sam is her other son who lives in Australia Sally and. Stephen have two children Jess and Jon Ian and Jane have Mark and Kim Madge adores. her grandchildren whose ages range from six to eleven years Madge is 67 years old and was. diagnosed with cancer of the oesophagus one year ago She had major surgery 10 months ago. She is doing her best to remain cheerful and get as much enjoyment as she can with her family. and friends, Madge loves having a tea or a coffee with Sally who calls at Madge s house each day to hear. about how the children are doing Sally knows not too push Madge to talk about her health. she respects that if Madge says she is ok she doesn t want to talk about it Another highlight. for Madge is Ian and his family going to hers for tea on Saturday and Sunday Also going down. to the sea front with Sally Ian and the children on a Sunday They often go for Sunday lunch to. Madge s favourite the Blue Anchor, Madge would never miss chatting with Sam in Australia on Skype each Saturday evening Sally. or Ian always dial through for her as Madge openly says she struggles with technology but it. mustn t clash with X Factor Family and friends are the greatest joy in Madge s life Her sister. Ann calls most days If the weather is fine they have a wander down to the village Madge looks. forward to calling into Betty s cafe for a coffee and catch up with Ann If Madge is tired Ann will. push her in her wheelchair although Madge is quite embarrassed about using it. Madge will really push herself to get to the luncheon club on Wednesdays to see Jane and Jim. They are her oldest friends Barbara Stan and Ron are other old friends of Madge and her late. husband Jim They often call on a Sunday evening and all enjoy a night in playing cards gin. rummy is a favourite, Madge is irritated when people tell her it will be ok the stark truth is we know it won t be ok.
and it is not helpful to pretend Madge is taking things in her stride What really makes Madge. smile are the great things happening in people s lives she would not want people to avoid. telling her the great things in their life because they feel awkward. Madge knows that her friends and family are aware of her sensitivity around food they know. not to fuss when she is eating or not eating and mostly respect this though rows still occur. occasionally if Madge feels they are watching her too closely She hates it when she is cheered. on through every mouthful or for clearing her plate she is clear that she is aware of the need. to eat and will do so when she can She has told family and friends they make mealtimes a. nightmare when they comment that she hasn t eaten much Madge is clear it is for the medics. to monitor her food and wants no comments from family and friends around how much or. little she eats,Living Well, Using person centred thinking tools with people who have a life limiting illness. Madge does her best to stay out of hospital she really fears having to be admitted If she. does have to go in she always takes her yellow bed socks She describes them as her comfort. Madge becomes anxious about hospital appointments and asks that people leave her be if. she is quiet when they are due She is clear that if she wants to talk about it she will do She. appreciates medical staff giving her clear simple information and will become upset if she is. talked over as though she is not there Madge is an intelligent forthright woman but finds it. difficult to be assertive when in the company of medical professionals Sally Ian or Jane and. Jim run Madge to the hospital appointments She prefers them to sort out between themselves. and just let her know who is picking her up and when They are always at least an hour early. otherwise Madge s anxiety goes through the roof The less conversation about appointments. and tests the better as far as Madge is concerned Sally is seen as the main contact with. Madge s consent for the health practitioners, Madge s Update from Person Centred Review which took. place in September 2010, Barbara Madge s neighbour arranged for someone from the Macmillan support service to. come and talk with Madge and Barbara about the benefits Madge was entitled to As a result it. emerged that Madge wasn t claiming everything she was entitled to She is now in a position. to pay a cleaner A family friend whose company Madge really enjoys is now cleaning for. Madge 3 hours each week This means Sally and Ian can spend more time with Madge when. they visit without having to try and keep on top of household chores as well This has made a. huge difference to Madge as she had felt she was asking too much of Sally and Ian which made. her feel very guilty but she can now relax and chat with them. One of the things Madge really wanted to do when we explored the If I could I would. question was to have a mini break in London and go to see a show in the West End Madge. happily reports I had a ball Sally and I went to see The 39 Steps at The Criterion It was. wonderful Another highlight was a cream tea at Harrods I had a cup of tea and a mousse. unusually for me I really enjoyed sitting down to eat with Sally I never thought we would make. this trip happen but by taking a step back and thinking this through at my person centred. review we did it fantastic, Another difference made is that Sally Madge s daughter spoke with her line manager at work. and is now working reduced hours 3 days a week instead of 5 This has a huge impact on. the opportunities for Sally and Madge to get out and do things together it has also eased the. pressure on Sally which in term delights Madge, The dietician has visited Madge at home and taken her a number of options to increase her.
intake of nutrients smooth soups smooth cereals enriched yoghurt drinks rather than the. nutrient drinks which were delivered as a block,10 November 2010. Living Well, Using person centred thinking tools with people who have a life limiting illness. Thinking about relationships Madge,Paid people in Madge s life. Care Workers Jane Jo Pat Lisa,Sue Joan Janet,People who Madge likes. Jane People who Madge Loves,Sally Daughter,Stephen Son in Law.
Jess Granddaughter,Chiropodist,Mr Weiss Jim Jon Grandson. Ann Sister Bill,Mark Grandson Consultant,Kim Grandaughter. District Nurse,General Practitioner,Living Well, Using person centred thinking tools with people who have a life limiting illness. What does a good day and a bad day look like for Madge. Lots of family noise in the house I have a restless night. Speaking to Sam I cannot face drinks or food, Seeing or speaking on the phone with my Any day where I have a medical appointment. grandchildren especially endoscopies and having to wait. for results,I get a picture my grandchildren have made.
at school I don t feel right and jump into panic mode. that something is going badly wrong with me,The sun is shining. I do not see any of my family or friends,I have a meal I enjoy favourite foods. fluctuate often Not having the energy to do the things I want. to do such as tidying the house,I enjoy my cups of tea at least 5 a day. Having to take my PRN medication due to, I go to sleep quickly and have a good night discomfort it makes me feel very groggy. Enjoying peeled grapes especially when Having to have nutrient drinks because I. lovingly peeled by any of my grandchildren cannot manage a meal. I get outdoors and feel up to walking I cannot face a cup of tea. I spend an evening playing cards with friends,or go to meet them at luncheon club or the.
tea dance having fun with friends or just,having good conversations I love to talk. Living Well, Using person centred thinking tools with people who have a life limiting illness. What is important to Madge and how she wants to be. What Madge s family appreciate about her, Her unconditional love her cuddles she is always there for me she goes the extra mile every day I just. love her everything about her her kindness,How best to support Madge. Ask me how I am if I say I am ok respect I do not,want an in depth conversation I will talk about.
my health when I need or want to please do not,push me on it. Know that when I have examinations or, treatment it is so irritating if you don t tell me. what you are going to do with me before you try,Don t tell me it will all come out in the wash we. What is important to Madge know it won t I want no elephants in the room. lets just make the most of the time we have and, Sally my daughter who comes to see me at my be as normal as we can. house after work each day our coffee and chats, together hearing how the children are doing at Give me clear and simple information Do not.
school talk over me as though I am not there I am an. intelligent woman Give any detail to Sally she, Ian my son who comes for his tea Saturday and will remember better than me It works best for. Sunday with my grandchildren whom I adore me if any correspondence about my condition. Mark and Kim comes to me through Sally, Staying healthy and out of hospital Know that I am aware of the need to eat and. Sally and her husband Stephen taking me out will do so when I can do not make mealtimes a. to the seaside on a Sunday morning with Jess nightmare by watching my every mouthful or. and Jon my beautiful grandchildren Having our commenting if I don t eat much. Sunday lunch out the Blue Anchor is a favourite Do not make a fuss and cheer me on if I clear. Speaking on Skype with Sam every Saturday my plate I want this focus on what I eat to stop. That you share with me the great things that the medics will monitor this not family and. are happening in your life I want to hear it it friends. cheers me Know that I cannot work Skype to speak with Sam. My sister Ann popping in each day and having a on my own I need Sally or Ian to set it up for me. walk into the village together we sometimes go Know that I detest the hospital appointments. in Betty s cafe for coffee which is lovely and will be very quiet on the days they are due. Meeting up with Jane and Jim at the luncheon leave me be I will talk if I want to. club Wednesdays Know that I use a wheelchair to get around if. Barbara Stan and Ron coming round for an I am not up to walking but it embarrasses me. evening in and a game of cards gin rummy is a terribly. favourite Work out between you who is coming with me to. That I always take my yellow bed socks Sam each appointment then just let me know who is. bought me if I have to go in hospital for a stay calling for me. they are my comfort blanket Know that I detest being late and get anxious. I love grapes with the skin peeled off the earlier the better for me I must never be late. Living Well, Using person centred thinking tools with people who have a life limiting illness. What is working and not working in my life and what do I. want to change, Seeing lots of Sally Ian and their More frequent off days having to. families spend more and more time in bed, Having Sunday lunch at the Blue Anchor Having to use her wheelchair when she.
with Sally and the family the noisy feels jittery, busy atmosphere works so well for Not getting outdoors as often as she. Madge would like, Going to luncheon club and the tea Not being able to look after the garden. dance with friends,Too many telephone calls from,Having evenings in with old friends friends. playing cards watching TV,Too many hospital appointments and. Speaking with Sam on Skype having to continually repeat the same. Having a big screen TV is wonderful information to different people. Busy weekends with family and The long waits in the waiting area for. friends some of her appointments, Eating peeled grapes drinking tea and Seeing Sally so tired out as she is doing.
coffee so much for her, Family and friends sorting out her The struggle to find food she can enjoy. hospital appointments and taking her Mealtimes are uncomfortable. to them Madge feels she is being watched by,Dr Prakesh Madge s GP everybody. Sal community nurse calling every few Weight loss Madge has lost 3 stones in. weeks the last 5 months,Looking gaunt,Nutrient drinks. Hospital admissions due to severe,abdominal pain,Not being able to go on holiday. PRN meds making Madge groggy,Seeing how unhappy her family are and.
not being able to tell them everything,Not sleeping. Not seeing John and Kate her old,Living Well, Using person centred thinking tools with people who have a life limiting illness. What is working and not working in my life and what do I. want to change, Mum s wonderful attitude character More frequent off days having to. and determination to do as many Mum insisting on doing things even. things as she can when she is tired out such as tea dance. Spending time with mum and chatting and luncheon club. at her house each morning Sally never has time to do tasks at. The children s love of their grandma home or spend enough time with her. and seeing them all enjoy time partner and the children due to her. together employment and looking after mum, Support from Ian and mum s friends Eating with mum it s become like. there is an elephant in the room every, Liaising with the health professionals time we eat together.
on mum s behalf,Mum looking so gaunt,Support from Dr Prakesh. Looking after mum s house cleaning,laundry ironing and the like. Mum s weight loss seeing her sadness,when she thinks no one is looking at. Sam being in Australia,Mum not sleeping, Support from Dr Prakesh Madge s weight loss tiredness. Support from Madge s family Lack of sleep,Nutrient Drinks.
Madge s increase in hospital,admissions,Lack of support for the family. Living Well, Using person centred thinking tools with people who have a life limiting illness. How I communicate with you Madge,At this When I do this It means You should. Anytime Lie on the settee with my eyes I have a bad head Leave me be I just need some. closed or just feel off quiet time, Anytime I say I am going to have a shut I am tired and Understand I simply need a rest. eye want you to go but to recharge my batteries and. please don t be we can catch up another time,offended I will usually give you a call the.
following day, When I am Ask shall I take my wheelchair I am feeling a bit Help me into my chair or put it. going out jittery in the car, At mealtimes Play with my food I don t want it Do not pass comment or offer. me a hundred other things just,Living Well, Using person centred thinking tools with people who have a life limiting illness. If I could I would Madge, I would go on holiday in a log cabin by the Lake in Windermere. I would visit Sam in Australia,I would go to a show in London.
Go on a cruise with the children and grandchildren. Living Well, Using person centred thinking tools with people who have a life limiting illness. What I want and do not want in the future hopes and fears. That I will have a long period of Being in pain,Being housebound or even worse bed. To keep as well as I can for as long as bound,Having to be admitted to hospital. To keep going to the market each,week Not seeing Sam again. To stay out of hospital That I make my children unhappy. Spend time with my friends at the That I lose the health I have and have a. luncheon club long drawn out death, Continue going to the tea dance at That I become incontinent this.
the Trafford Centre with Jane and terrifies me, Jim each month If I looked so gaunt it would pain my. To go away on holiday by the sea a family and friends to look at me. little cottage in Wales would be lovely,with Ian Sally and the grandchildren. That I will die quickly and not put my,family through a long drawn out end. Living Well, Using person centred thinking tools with people who have a life limiting illness. Making changes to my life Madge s action plan,Who What By when.
Sally Will speak to Dr Prakesh about Madge s PRN meds 8th September 2010. Ian Will arrange a weekend break for Sally and Madge in. London taking in a trip to a show in the West End 15th September 2010. Ian and Jane Have Sally s children stay over with them when Sally On the weekend they. and Madge go away go away, Sally Will speak to her husband Stephen about working. away less for a while 6th September 2010, Barbara Madge s Will make enquiries to look at what benefits such. neighbour as attendance allowance Madge is entitled to. with a view to paying a cleaner 15th September 2010. Madge and Ian Will contact the bank to look at her financial. situation to see if she can afford a cleaner for,herself and Sally 15th September 2010. Ian Will speak with Sam to work out if he can visit and. stay with Ian for a few weeks 8th September 2010, Sally Will contact John and Kate Madge s old friends in. London to arrange to visit with Ian and mum and, go to see a show in the West End 28th September 2010.
Tracey community Will contact the consultant Mr John and the. nurse social worker to arrange a meeting about Madge s. deteriorating health and options for additional,support for the family options to the nutritional. drinks and insomnia 8th September, Sally and Ian Will look at what resources are out there to support. Madge to get out more 30th September 2010, Sally Will arrange a meeting with her supervisor top take. a period of leave from her post 8th September 2010. Living Well, Using person centred thinking tools with people who have a life limiting illness. What do I want to add as I think about the end of my life. What I want What I don t My family s, Where I want to die At home To be in hospital Sally Ian and Sam want.
on my own to be with me, About my funeral I would like my funeral to Black clothes My family are happy. music readings be quick with just the 2 with this,flowers etc hymns and one reading at. the crem at Carlton,No flowers a donation,to charity of people s. own choice if they wish,Donation made by them I,don t want Sally to have. anything to worry about, About being buried I want to be cremated A shroud I would want to lie in.
or cremated Sally and I have chosen the rest at the funeral. clothes hair clothes I will wear I want directors not at. jewellery my glasses on home, About the scattering Sally Ian and Sam scatter my My ashes The children have. of my ashes ashes together at the end standing about promised me they will. of Blackpool pier into the in a pot do this together. sea At least if I go suddenly,and Sam does not get back. in time from Australia the,three of them can do this. together which matters so,much to me, About what My family and friends to The family will do. people do after go back to Sally s with a what Madge wants. my funeral food buffet I have ordered from,drink a celebration Marks and Spencer s and.
memorial remember with happiness,the time we spent together. About a gravestone I just want those who love A physical Sally would like a. or marker for my me to carry me in their memorial grave to visit but. ashes or burial place heart they will always feel accepts my wishes. close to me if they are by We have agreed to,the sea any sea I just have a bench on. love the sea Abbey Hill where the,sea runs by but no. plaque she can go,and sit there and,think of me, What else is Sally and Ian know the Only Sally to My family have. important to me things they can give to sort my stuff agreed to this. charity and who I want out,to have of my remaining.
possessions,Living Well, Using person centred thinking tools with people who have a life limiting illness. How would I like to be remembered Madge, Do not dwell on my frailty when you think of me remember the. fun and laughter we shared, Madge would like her three children to meet on Blackpool pier. and scatter her ashes in the sea together, Go to the illuminations some years and walk along the front. and talk about the wonderful times we knew,Living Well.
Using person centred thinking tools with people who have a life limiting illness. End of life decision making agreement Madge, Decisions to be made How is Madge involved How the decision is. and who else is made and who makes,involved the final decision. Around my treatments I want to be fully involved Madge. and my condition but it makes more sense if,information comes to me. through Sally She knows,how to put things across to. me and helps me come to,decisions I cannot follow,some of the consultants.
Where I will be looked I want Sally and Ian to be OK Sally and Ian. after if I become very I would want to stay at home. dependant but know they will do what is,best if it gets to the point. they find it too difficult, Where to die Madge talks through with her Madge her preferred. son Ian and daughter Sally place for her end of life. is at home but she is,comfortable for Sally and,Ian to ultimately control. this decision given that she,trusts them completely. How she wants to be Madge Sally and Ian Madge,remembered daughter and son will.
discuss Madge will also talk,to Sam her other son who lives. in Australia Alison from the,long term condition team. also has some ideas for, Whether to be Madge the district nurse her Madge has decided she does. resuscitated consultant and his medical not want to be Her decision. team to be respected by medical,Which funeral directors Madge Sally and Ian Madge. Living Well, Using person centred thinking tools with people who have a life limiting illness.

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