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There is something I have to tell you

 

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“……… there is something I have to tell you, I am having to give you my one months notice”. Words that a person who receives care can dread. I have had these words said to me, by carers, over the 5 years that I have employed my own staff, some effected me emotionally, some not. But this month three of my care team have said these words; not because they don’t like the job here with me because they do, but their lives have moved on and so must they. A sad fact that I must accept but as this article will show, easy to say but hard to do. So who are the three I am talking about? All three of them are, were, part of my care team for a very long time, J 1 year, MH 5 years and MF who is only reducing her nights from 2 nights to 1, 15 years.Over the 25 years I have received care, mainly through social services and care companies, the leaving/changing of staff has never been an issue, why? Because you very rarely saw the same carer more than twice in a row, if you were lucky. As I did not like this state of affairs, and because the government brought in Direct Payments giving service users a greater control over their care, five years ago I decided to take the Direct Payment/Personal Budget route and employ my own staff, some 9 in all, – Due to the extent of my disability, I have severe Rheumatoid Arthritis meaning I have great human and wheelchair dependency hence the number of part time staff I employ – while I would never admit it, staff changes did and do effect me but no more than it is right now.While I and my carers always try to keep a professional line between us, that line when someone has been with you a long time, tends to gets fudged and try as I do, I still find myself seeing them as a carer cum friend and not just a carer. With this in mind and the fact that two carers are leaving and one reducing her hours I would like to share with you the mental and emotional journey I am now on.

Talking to anyone about ones true emotions on any subject is not always easy, especially to strangers on a Talking Health Matters web site, but I will give it a try; perhaps some of you have had similar experiences.

I was expecting MH who has worked with me for 5 years this month, to say she was giving in her notice because for the past year MH and her hubby have been going through all the hoops, and believe me the authorities leave no stone unturned so there are many, many hoops to jump through, to become foster parents and last week it was confirmed that they had been accepted. I was thrilled for them both and was already emotionally ready for her to leave. Her job along with MF, who is dropping a night, was put in the job section of the local newspaper, and I am, as I write, waiting for returned application forms. A situation I have found myself in a few times since 2006 so why are things different this time, the answer is J and her dog Sally.

J has been with me, as I said just over a year, and does my weekend shift 10 am to 6 pm. I really thought that we would grow old together, but that now will not be happening. J is a great cook, she used to be a chef on the rigs but left to get married and bring up her family. Her other job is working with people with learning difficulties which she loves, and the organisation that she works for has offered her a position which includes her love of cooking that J just will and could not turn down. If all the plans in regards to this position fall into place today, I will be getting her months notice on Saturday. J, along with her dog and mine, often go out at weekends for long walks along our coastline. This I will miss terribly so will Jack and Molly my two Jack Russell’s. There are lots of other things I shall miss about J , her very dry sense of humour, nipping to the bottom of my garden for a quick ‘tab’, her Scottish accent, and most of all J and Sally, who has a unique bark to get your attention and their being themselves.

J told me about her decision and the reasons for it on the Saturday and on the Sunday while I was in church, I found myself fighting back tears as the reality hit me that my friend cum carer was leaving. That fact made me realise that no matter how hard I try not to get close to my care team, in some cases I just fail, as in the case with J. I now have to face the prospect of trying to fill her post, easy to fill the post but hard to find anyone like her and Sally. So why this narrative?

I realised that I may not be alone in feeling as I do when a member of my care team leaves. It also appears no one in authority has ever given it a thought about how some who are dependent on the people who care for them feels when that person leaves. My care team are the most important people in my life; I have no immediate family, and friends not connected with my care you could count on one hand. My care team share with me my good and bad days. They share with me and make it possible for me to live my life as I wish to, whether that is driving my power chair from Lands End to John o’Groats, working as a volunteer with McMillian Cancer Support, feeding me, or even taking me to the loo, someone from my care team is there with me. I slowly build up a trust with them, I hear about their lives and they share mine. I share with them, some more than others, my secrets, fears and joys, then that person is no longer there as in the case of J and a few others. To me this whole situation is like living through bereavement but without the emotional support you need. I am lucky this time as there is one particular carer who is a third year counselling student and whom I can talk to, but I have just learned that due to an accident she is off sick for 6 weeks. I feel a lot of phone calls will be going in her direction as this time I work my way through how I feel.

I have been asked, for this narrative, to log what happens to me over the next few weeks, this I will be doing. At this precise moment I am waiting for a text that will say if or when J is leaving. I should know early evening. Who knows I may be lucky it may not be until the New Year.

It is 5.30, time for Neighbours on Channel 5 and I am waiting for J’s text. I am feeling unsettled and every time I get a text I jump because I think it is J… Must be like waiting for any verdict especially when that verdict will have an impact on your life.

At 7 pm my text went off, no it was not J it was someone answering my add in the paper sending me her postal address. Details will be put in the post tomorrow. My waiting goes on.

It’s Thursday 3 pm and this morning I received the text from J, I will not revel the contents but will tell you that it is official, on Saturday J will be formally handing in her notice. I have so many emotions churning around in my mind that half of me wants to cry, the other half is excited that a new era is about to start in my life. New carer staff, new who knows?

Everyone is telling me that everything happens for a reason. How many times have we heard that old cliché? How many times has it proven to be true? When one door closed another opens. We have all heard that one. I think I am getting to old for changes in my life, but saying that, I have three new volunteering projects that I am hoping to get involved in. I have attended training sessions for two of the project and the third I will attend in December. Yet another case of opening a door and seeing what is the other side, but you know what I had started to open these doors before J told me her news. I just want things to stay as they are but I have no control over the situation. I am feeling helpless and if I dare say the D word, Disabled.

My staff are free to leave when ever they want, and do. But with employment law as it stands, I cannot ask someone after one year of working with me, to leave just because we do not get on or I don’t like them.

I feel very lonely at the moment. I feel I have lost control of my life. Changes are being made that I don’t want to happen. J, I know you will read this narrative and I want you to know that you and Sally will be missed terrible. I know we all say we can keep in touch, stay friends but that will very probably not happen.

Right now I just need a very big hugggggggg. So not going to happen. Maybe my next piece should be on the subject of touch and what it feels like not to have it, unless of course someone is doing my personal care. A different touch to what I am talking about, but I think you know that.

So what next.. Before Saturday, when J returns to work, I will put the add in the carer required column of the job section of the local newspaper for J job, that will go out next Thursday. I will get about 25 replies and information packs will be sent out. If I am lucky 20 will be returned and I will offer them an interview but only about 6 will turn up. 2 will make it to my home and one will be offered the job on a trial of 4 months.

As regards J I know what the next four weeks are going to be like with J. We will both try and carry on as if all things are normal. This Saturday J will come into work. I shall tell her that I am happy for her, we shall talk about her new job and the dogs will chase each other around the house. The kettle will be put on coffee. I will then be taken in the garden if it is not raining, coffee and tabs for J. I have this Saturday a plan, best to get out and about. Why, for me to get away from the reality I am now in. We are going down to the beach, meet up with B, run the dogs, have lunch of fish and chips and talk. I need some talk time with B by myself, but I am not too sure when that will happen on Saturday, if it happens.

As I am been honest with this web site, it is times like these that I just wish it would all stop. That I could just say enough is enough. No more social services, no more fear of my care package been cut. I have this fear at the back of my head all of the time. No more dependency on others to enable me to do things from opening my gate to let me out, to feeding me, and to wiping my bottom. I think you know what I mean.

I know that I am very lucky. I have a nice house, people around me that care for me. I am in very good health, but I am not free. I would give this all up to be able to put a pack on my back, Jack and Molly on their leads, just close my door and go where the wind blows. To be free again from my dependency on people. But that is not going to happen unless there is such a person as a Fairy Good Mother.

7.00 pm Thursday. T has also given her notice. T only did 3 hours per week for me and has now found a full time job. T will be missed very much. This all goes to show me how reliant I am, a reliance I hate, on total strangers to run my life. Total strangers whom I have only meet because of an advert in the newspaper. If I was disabled as I am with a hubby and family around I am sure I would feel a lot different. Love of a fellow human being must help someone in my position to feel wanted and valued as a human being. This is a feeling I am not getting right now.

Monday, I need a hug. I can tell you, I am in an emotional mess with J leaving. This forming a relationship and trust with someone and their dog just to have it broken is a killer. From the short list (the two jobs were advertised) only 2 said they were still interested. The two I would think could take J place have said no. It is like having any relationship broken up; it is like having a friend saying they do not want to play with you anymore. It is a bereavment. I must try harder not too get close to my carers, Keep that professional line. How long can I keep this up time after time?

I know that I will work my way though all the feelings, good and bad, my care team will see to that. I know that tears will be shed when J and Sally leave for the last time, but there is still a lot to do before then. I know that a suitable person will take their place in my care team, but that will take time.

Final update, 3 weeks later (Christmas approaching), J has now left the building. We are to stay in contact, just hope that is so. We said no goodbyes, no tears, but I was fighting back the tears all day. The final lift in the hoist, the final coffee, meal, that sort of thing. I shall miss J and her dog immensely but have the New Year to look forward in a few days. I have signed on 2 new staff, and there are a number of new projects for me to be involved with but these are all material things, it is the relationship that we have with people that is the most important thing, well I think so.

All good narratives should finish on a positive note and this one is no exception. So to finish this narrative, I would just like to raise my glass to the New Year and bring on all that it holds no matter what it is. Main thing is to stay positive, stay focus and enjoy the moment. This I fully intend to do.

I hope this narrative has been of some help to you. That someone in authority will realise that perhaps they should look into how they can support people, if they need it, whose carers have moved on.

ML

You are responsible for your life, no one else

 

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Having lead a fairly active life up to the age of 40, I am now 64, had the regulation marriage, and divorced, no children. Owned my own house and fudged my way through a few jobs bringing enough cash to keep body and sole together, life was pretty good, then my dad died and the centre of my universe was no longer there.

My dad was like to most daughters, my friend and confidant. He fixed my house, mended my car, and gave me the love that only a dad can give to his daughter. I still miss him 24 years along the road, a road that within a few months of dad dying, found me in a wheelchair, then mainly confined to my bed for the next two years. Why, because my rheumatoid arthritis, which was diagnosed in 1974, just went out of control, my arms bent, my legs went stiff, which meant it got more and more difficult to get out of my power chair and onto my bed, so the easy option was to move my bed down stairs and stay on it, and that is just what happened to me.

I saw the seasons change from my bed by way of the reflection in a large picture on the wall opposite. That refection came from the large bay window that was behind me and to my right. I did have a home help came in three times a day for an hour each time. Turning on the TV, putting lights on and off, answering my phone and front door was all controlled by a machine called a Possum Control; go to http://www.possum.co.uk/ for more details.

My mom, who died a few years ago, use to come up from Birmingham to see me, seeing me like I was made her cry like any mom would, she felt helpless seeing her eldest daughter lying on a bed unable to move, disabled and dependent on others to meet all of her basic human needs.

I spent many hours alone, frighten and crying. I had the notion that I just wanted this existence to end as I could see no end to it. The only way I could see to end my life was by bashing my head on the brick wall which was next to my bed. I really did think that and tried it. I though that by hitting my head on the stone wall I could cause a brain bleed and I would die. The only thing that knocking my head on the wall did was to give me a sore spot on my head and bad headaches, as 24 years down the line proved, I am still here.

One day I woke up, as we all do, and realised that the world outside my window and now alien to me, was not going to knock on my door, take me by my hand, pat me on my head and say “there, there Mary” and give me my old life back. I had to take back my life and control of it, stop feeling sorry for myself and do something about my situation; none else was going to do it for me.

My first step was to move to a bungalow and when I moved in I remember saying to the removal men as they unloaded the van, that my bed could go against that wall, pointing to a wall in my lounge, only to be reminded by my friend that I now had a separate bedroom. My mind was still in my old life.

I could now slowly see me taking my life back. I started to go out at first for short periods of time, remember I was in my comfort zone when I was in my bed. This getting my life back was not an easy journey and was a full 2 years before I was out of my bed all day. My care package was increased, so I was able to go to the city, do my own shopping, all ofcouse with the help of a carer with me. The more I managed to get out, the more I wanted to do get out and do things, shopping for myself, and I love going to the theatre, live music concerts. The list was, and still is endless.

This as I have said, did not happen over night, I made it happen. I saw a door of my life open and I went through. I once again took charge and control of my own destiny.

Since getting my life back I could write a very long and boring list of what I have done since to take back control of my life. The main thing is I did it, not someone else.

So what about next year, 2012?

2012 is the year that the Olympics comes to the UK and I and my care team will be there as “Game Makers,” for more details go to http://www.london2012.com .

So if you are sitting at home, waiting for life and social services to provide you with what ever you think your rights are you need to think again. If you are disabled or elderly, fed up, depressed, got no cash, then say to yourself what I can do to improve my lot. I say bang on a few doors, ask your own questions, get you own answers. There are many doors you can bang on, say let me in, and say I need some help, and ask your own questions.

If I may use the Church word, if you are a Christian or not, try out your local church, there is usually quite a community behind those closed doors, who knows what you may find there. You may or may not discover God but you may make some good friends. Try banging on any door to any organision and you may well be surprised the help you will find. I still do bang on doors some 24 yrs in and I never cease to be amazed at what gifts and gems are offered.

I do have my good days and my bad days, we all do, but the bad days are few as I am now back in control my life, and will I go back to how things were, in the words of a good friend. “That is so not going to happen!”

ML

Mrs R Story

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Yeah, mine s not a very happy story. I’ve been in hospital, I’ve had some dreadful experience and the only kindness I’ve had was from individual nurses or medical staff. Because they are the ones that you are involved with mostly. Er… I fin that (pause) they’re influenced by their senior staff and if their senior staff aren’t caring they become uncaring. (Pause) Er… I think junior medical staff are all the same. They do two years, they feel they know everything and they too become… (Pause) The patient is the last person on their agenda. If they can please their consultant, they’re happy. That’s not true of all of them. You do find occasional ones who do care. But it’s very, very rare. It really is. (Pause) I found that… In a bay with patients – really old ladies – in one bay an old lady left with a coat over her for 24 hours because they didn’t have any blankets. Another old lady not given a drink, unless her relatives were around her and then she was absolutely (pause) overcome with attention from the senior nursing staff. (Pause) And just a smile in the morning from, uh (pause), student nurses or long housemen… (Pause) very, very few of them have the, um… (Pause) They just don’t give you a good morning or a smile or… And some of them don’t even look clean. (Pause) I don’t know how I can get through to some young girls as to (pause) even look clean first thing in the morning and not smell of last night’s lager and pizza and talk about last night’s episode with the boyfriend or the kids or (pause) talking over the bed. (Pause) (Chuckles) I’m afraid it’s not sounding very… (Pause) It’s… (Pause) I Would you be able to tell us what took you into hospital on this occasion and how long you were in? R Well, I was in the first time for, er, a week. (Pause) That was in March. The second time in for two weeks. But there was the very first week… (Pause) I went to the shops, which are 5 minutes away (pause) and I just couldn’t get to the shops. I’d been ill for about a fortnight with a heavy cold. Just (pause) couldn’t get, which… You know, you’ve seen how far those shops are away. But I needed milk and I needed toilet rolls. You know, which… (Pause) Are just normal commodities. I had to find a (pause) social worker myself once I got in there to help me with these things. And, er, I had to find a physiotherapist myself. You know, because I didn’t know whether I could walk up and down the stairs because I was absolutely breathless and I was going to be discharged and… (Pause) But I had to do that myself… (Simultaneously) I did ask… I (Simultaneously) While you were in hospital? R Yeah. I did ask nursing staff, nothing was done. And I did say, you know, “Which one is a physiotherapist…?” Well I knew by their uniform. And then which one was a… (Pause) Erm… (Pause) A social worker – you know – to do… (Pause) To get some… (Pause) Shopping. But that was what first got me into the ward that was absolutely, and completely, disgusting. Old ladies left without a drink. Too much sitting around the Nurse’s Station. But all stemming from the senior nursing staff. If they’d… (Pause) Another thing for young girls – be the first out of the Nurse’s Station. Don’t sit there as long as everyone else does. You know, it’s not… (Pause) It’s nothing for you to be up first on your feet and get to see to the patients instead of sitting gossiping around, em, nursing stations – which they do. I think you see that… You see that on film. On here, if there’s anything you see a crowd of nurses around the station and… (Pause) You know, try and (pause) be the first out to help. Or try and… (Pause) I thanked one support worker for giving an old lady a drink (pause) and she said, “That’s my job.” The next minute I was moved from that bay because I was obviously being sarcastic because we were feed… We were giving the old lady drinks. (Pause) I was moved straight away from that bay to another bay and my bed was moved in, my sheets were on the ground and they were in urine. You know, you could smell it and you could see it and two nurses said, “It’s not urine, it’s just water.” But it was… (Pause) And then a third nurse came and said, “Yes, there’s been a catheter bag burst down here”, you know? “Her sheets are lying in urine.” But it… (Pause) I felt you had to fight (pause) all the way. The only way you got any attention was if you had massive amounts of relatives beside your bed, day and night. Then you were given every attention. As soon as those relatives disappeared, the patients were just left. (Pause) This is a hospital in Newcastle (pause) and just happening last year. It was the most dreadful experience of hospital life. I Did you make a complaint? R I complained orally to a consultant. It was a medical ward so they… (Pause) It was all just passed off. It was, you know… (Pause) Previously I would have complained (pause) and written but I really hadn’t the… I hadn’t the incentive or the energy to do it. I had no energy whatsoever. I’d already made a complaint about another hospital within in the region the previous year. I got to the stage of all the writing of letters – which I had to do by hand, I don’t have a computer – and… (Pause) In the end, the person I was complaining about – which was a ward sister – was counselled and I was left with the dregs of all of this here. Of writing, visiting the ward… Visiting the hospital and… I just thought, “What’s the use?” If I’d wanted to take it further to any of these other agencies I would have had to handwrite again, letters, and by then I was really feeling so dreadful that (pause) I didn’t do it. So… (Pause) I think leaving things – unless you have a strong (pause) support, er… (Pause) Er… (Pause) Well, unless you do have strong support from friends and family, (pause) I don’t think… I feel very sorry for any patient. I really do. Because you have to fight all the way. There may be exceptions, but I certainly didn’t find any. I find the senior nursing staff don’t even have the courtesy to say, “Good morning.” Even if you aren’t their patient, they are in overall charge of the ward. (Pause) But you don’t… I walked past a ward sister – the senior ward sister – she said, “Where are you going?” I said, “I’m going to make a phone call in the Day Room” – the patient’s Day Room. She said, “The nurses are having their break in there. But you can go in if you want to.” So I did go in and make the phone call, but it was as if I was intruding on the only place where one could make a phone call. And they were the only words she spoke to me for the whole week that I was in there. And she was running the ward, so… (Pause) Her assistant, trying to do three jobs at once – do a drug round, clear breakfast dishes, three hours later than the drugs were due, and give out wash bowls and leaving old ladies with a bowl behind screens for… (Pause) I think I’ve said sufficient. (Chuckles) I’ve… I What’s your feeling about having to go back in…? If you had to go back into hospital again? R Well I’ve said that (pause) if I have to do go back, and I think, you know, with this AF and COPD and things, I think I will have to go back in. And I’ve said I won’t go to this ward. But really, when you get there you’re in their hands. You know? And if you have… (Pause) There’s very little you can do unless you discharge yourself. I tried to discharge myself. (Pause) I was put in a wheelchair, asked to sign the form. I couldn’t get down to the entrance to order a taxi because I couldn’t walk. And er, (pause) I said, “Well…” (Pause) This… This was a young, disgusting houseman… (Pause) “How can I…? (Pause) Will someone get me to the entrance so I can order a taxi?” He said, “No, they won’t.” I had my bags and… (Pause) “Just sign the form and get out.” And I couldn’t sign it because I couldn’t get down to the entrance, you know, so…? (Chuckles) (Pause) I So you had to stay. R I had to stay. Yeah. Yeah. (Pause) But… (Pause) I And you’ve got some care in the community? You’ve got some social care support, have you? R I have, em, (pause) home help – they call them carers now, I think. An hour on a Monday to do help with the housework. And an hour on Friday to do the shopping. (Pause) Er… (Pause) I And are you largely housebound? R I’m largely… I try to get out. I have a friend, a friend lives in Consett. I try to get out, perhaps once a fortnight, with her for lunch and… (Pause) It’s quite difficult because, (pause) you know, she has a family. She has… She works full time. She has a daughter… You know, they’ve just had a baby. (Pause) And… (Pause) This is all, really, just by the way. I just see her either once a week or once a fortnight, you know, but… And I try to go out. I go, er, down to town and have lunch and get a taxi back. (Pause) And I’m shattered for two days. You know, just for having lunch with… (Pause) But it’s… I just feel unless you can keep on trying or go, perhaps, to the Metro Centre… Get a taxi over and then go to a restaurant and shattered. You know, so… I So the library service is important to you? R Hoo… Gosh, yeah. And the lady comes – Violet, I don’t know her surname – she’s been absolutely terrific, she really has. I’ve always read a lot, but now, as you see – I don’t know if you saw, I’ve got a (pause) a trolley downstairs… A shopping trolley. I haven’t driven for 4 years. I packed up driving. Which was a silly thing to do at the time. But I’ve always… You know, for 4 years I’ve walked along there and, er, (pause) got the books from… You know, there is a library along there – you got the books from the library along there. Then when all of this happened and then, I think I rang them and asked them if there was a mobile library, you know. Someone said you could go to the end of the street or something. And then, (pause) er, I came that this… Violet came and she came once a month. She comes once a month. She leaves me 10 books. She’s absolutely… She’s just got a terrific personality, you know. And you just wished that every carer, every nurse, every doctor, could have the personality and the enthusiasm that this library lady has, you know. Which is (pause) asking a lot, but… I So, her particular qualities, (pause) are…? What would you say they are? R Well, (pause) she brings me books that… You know, she’s obviously thought of what I like. I… I can’t concentrate much now but, you know, I used to like, em, I think I said to her I like female, English authors. And now everything in… (Pause) Or mostly in large print, because I read mostly in bed. And she doesn’t forget anything. You know, if you give her one book that, if I’ve read a review of it she’ll, next month, she’s got it there for you, you know. She… I can’t read… Read… (Pause) Paperbacks because I can’t hold them with this hand, you know. So as soon as I said that to her, you never saw a paperback again. You know, she’s just got a caring attitude, you know, so… (Pause) I just think, em, (pause) I just think a lot of her. You know enough… (Pause) She’s just a jolly good all-rounder, you know. Someone that you don’t see (pause) much of, today. You know, I find most, a lot of people are selfish. A lot of people are… (Pause) and the just gives you a bit of faith in human nature again, you know. (Chuckles) (Pause) So… I (Pause) Thank you very much.

Alfie’s Story

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I’ve been involved with this university for a couple of years as a user / carer. I often get involved in talking to students of various nominations, i.e occupational therapy students but Alfie’s now 10 and I quickly became a member if you like of this new world of disability. When Alfie was actually two years of age, because he used to see a certain paediatrician she asked me if I would like to go to the University of Durham, Queen’s Campus to talk to first year students who were students to become our future doctors. So I did that for five years and it was five years consecutive, talking to the first year students but what was lovely was I came back each year, some of the students from the year before used to come along to see me and Alfie, and indeed his big sister Helen. So if we go back, what my story basically is, is around Alfie and the prenatal aspects, the birth and the couple of years following his birth.Basically, right Sam was 17 months old when I fell pregnant with Alfie. With Sam everything was absolutely spot on, same as Helen, perfect pregnancy, breastfed, everything was absolutely fantastic. With Sam in fact I was home within four hours of giving birth which was great. Because of my age, I was 49, sorry 39, (I’m 49 now!) 39, me and my husband did want two children but time wasn’t on my side so of course we went about it pretty quickly i.e the close age gap. So I fell pregnant, went to see a midwife who offered me the routine blood tests which has no effect on the baby, no effect on me, so I agreed to it. I thought ‘well it’s not like the amniocentesis where there is a risk of losing that baby’ which I didn’t want to take that risk of losing a healthy baby and having to go through all, you know, get pregnant again and all those awful three months where it’s absolutely horrid, where you feel shattered and tired and yeah, it’s quite hard those first three months of pregnancy. So anyway I went off to see my midwife and I said ‘yes, I’ll have the routine blood test’. ‘Oh’ I said, ‘if there is a problem what will happen?’ She said ‘oh, I’ll come knocking on your door’. So I thought ‘oh nothing will happen, Sam is only 17 months old, he was a fine, I’m a healthy lady’ anyway a couple of weeks later, after the blood test and time was getting on at this stage, I was probably getting on for half way through my pregnancy, just starting to feel pregnant, feeling well, getting that little bump, planned to go out shopping with my daughter and a friend, and the knock came on the door. And I looked and there was my midwife and I thought ‘oh heck’ – I remembered now she said ‘if there’s a problem, I’ll come knocking on your door’. So, I answered the door and it was obvious that it was going to be sort of bad news, my daughter was upstairs with a friend, midwife came in, but basically I was left standing in my hallway and she said ‘oh the results have come back, there’s a 1 in 20 chance that you’ll have a baby with Down’s Syndrome. I’m really sorry, it always happens to the nicer people.’ And straight away I felt ‘oh heck, this is so negative; this is so serious’ because I didn’t have a clue about Down’s Syndrome. Just I’d never grown up with anybody with any disability to be fair. Anyway as I say, I really had the wall holding me up and eventually we went through into the room, I sat down. She said ‘well would you like to ring your husband blah di blah’ which I did. BUT, in hindsight I didn’t realise that Helen upstairs had heard everything – ‘cos we were stood in the hallway and I wouldn’t have wanted her to have heard that conversation because I did in fact keep that 1 in 20 result from most people including family, most friends, so I was quite upset later on that she’d overheard that conversation and even though she was 11, she did understand because they teach things about birth and what have you, you know sort of first year seniors.So, anyhow she went, I phoned my husband but what she had said which did frighten me as well was ‘oh but I booked you in for an amniocentesis tomorrow’. And I thought, I’m sure in an earlier conversation with her I said I don’t want any sort of tests that might affect my unborn baby. Anyway, when Mark came home, my husband, he said, ‘well we’ll go down and then we’ll know one way or another’ but certainly with no intention of aborting the baby basically. So, I agreed with him. So I thought ‘well, I’ll go down’ even though I really didn’t want to have this test, but then we’d know either way and we could prepare a bit better. Anyhow when we went down to the hospital, thankfully I spoke to a doctor, she was a female doctor and she sort of spoke to me and she made me think about both sides of the sort of coin really. Instead of it being all negative ‘oh have the test, then you can get rid of this baby because it’s got Down’s Syndrome’ which, at the time I thought must be the worst thing in the world. Anyhow so she, she didn’t talk me out of it, but I said ‘actually I don’t want to have it, and we’ll be happy, going through the pregnancy and seeing what’s what’. So I left the hospital thinking ‘YES, I haven’t had that test, I’m not going to lose my baby’, but then I thought ‘hang on a minute, we’re still not out of the woods, because we’ve still got the rest of the pregnancy to wait’. But I did try to put it to the back of my mind and people, like my husband would say ‘well, if there’s a 1 in 20 chance, why should you be that one person?’ You know if there’s 20 people in a room, if you work it out, it works out – is it 5% chance? So I thought, probably won’t be me, well I hope it won’t be me, to be honest.

But there was still those doubts so I went to the library, bearing in mind that Sam was just a little toddler still. While he was asleep in his buggy, I looked up a few sort of reference books in the library which were ancient, again really, really negative and I just sat in the library and just cried. And then I went home, I had a really, really lovely neighbour called Fay and she was like a mother figure really. So I told her, and again it was all negative ‘Oh, Linda I couldn’t bring up a baby with a disability. I work in a post office and there’s people that come in with disabled children and they look haggard, their life is ruined.’ And I thought ‘oh heck’ but I’d already, me and my husband had made our minds up that we were going to continue. And it was hard. The rest of the pregnancy was hard.

Anyway to sort of move forward to the birth, it was, wasn’t a long labour, it was uncomfortable as labours are, went into the hospital. Soon as Alfie was born basically, we knew. Don’t ask me how because I’ve never seen a newborn baby with Down’s Syndrome, but the atmosphere just told us everything. I think, I don’t know about everybody who’s in labour but once I’ve had the baby, you go into a bit of a shock really. And all I noticed was no sounds, no smiles, my husband went over to a window and he was, well he was crying basically but while I was in labour I said ‘Oh M will you tell me when the baby’s born if everything’s alright?’ He said ‘well how will I know?’ ‘Cos at the time you don’t think you will, but in actual fact as soon as Alfie was born, the atmosphere just told us all. ‘Cos I mean the midwife knows more than I do, and obviously he was much more floppy, he had those characteristics that, I don’t know, I probably wouldn’t have recognised because I’m not in that field. So the atmosphere was just awful and I went into I think a worse shock really, thinking ‘oh God, how we going to tell people? How’s the rest of our life going to be?’ and sunk into a depression really. So we even had thoughts of moving to New Zealand to avoid people because we just thought it was that bad. I don’t know, it’s just all sorts goes through your mind. You just sort of think that you’re one in a million, but you’re not, when you learn more.

Anyhow, we brought Alfie home after about three days in hospital. And looking back, it’s still hard, even ten years on, looking back because I had feelings, such awful feelings of what I’m going to tell you next.

Basically I’d breast fed two children very well, for six months, maybe a couple of months more; with Alfie because I didn’t know a lot about Down’s Syndrome, I thought he was feeding OK, breastfeeding and again not knowing much about Down’s Syndrome, Alfie slept a lot so I did my best to feed him fairly regularly but he just seemed to want to sleep and people were saying ‘oh God, you’ve got the ideal baby, you’re so lucky, don’t complain’ and a part of me thought ‘this isn’t right’. So in the middle of the night I was setting my alarm to wake him up to feed him and I honestly could have picked him and dropped him on the floor and he wouldn’t have woke up. So I just thought ‘oh that’s Down’s Syndrome.’ So anyhow of course you have your daily visits from your midwife and I said to her ‘well that pile of nappies there isn’t going down. He hasn’t had a poo’ …. ‘Oh don’t worry it’ll be low muscle tone and or it could be constipation, so don’t worry.’ So everyday I’d mention it again, ‘he doesn’t seem to be weeing much and he hasn’t had a poo again’ and me saying that didn’t seem to acknowledge that there could be a problem there. Because looking back I think ‘well, how stupid that I didn’t put two and two together. If there’s no wet nappies, obviously there’s no fluid getting in him!’ You know, my milk wasn’t getting, he wasn’t suckling like I thought he was.

Anyway, thankfully on day 11, the health visitor comes on the scene. And I knew this health visitor from when Helen was a baby because she was the same health visitor and she’s a lovely person, obviously experienced in her work. And when I told her my tale, I think she could tell by looking at me anyway, because a woman who’s breastfeeding, her boobs are absolutely full basically and she could probably tell that mine weren’t. And she said ‘Linda I want you to straight away start expressing milk’ so I thought, ‘right, I haven’t got an expresser but I’ll get one off my neighbour’. So I quickly, can you, ‘I need to express the milk, have you got a machine I can use?’. She said ‘yes’ so I started but not a lot was coming through because this was day 11, I’d not really breastfeeding successfully and the milk wasn’t, you know it ‘s like a supply and demand effect. So she said ‘start expressing every two hours’ which, if you think I had two littlies, little Alfie there, fair enough he was sleeping a lot but I had Sam as well who was 17 months. So I did my best to get things rolling. I thought ‘blooming heck, this is serious, something’s not right’ anyhow my health visitor rang me up later that day and she said ‘Linda’ oh ‘cos she had said she would arrange for me to go to the doctor’s. She said ‘I’ve arranged for you and a hospital bed, I want you to go down there straight away.’ So we went down, bearing in mind at this time Alfie as I say was sleeping a lot, there was a blue tinge round his mouth, which meant nothing to me, to be fair. His eyes were really wrinkly, like dehydrated it would have been, I didn’t know at the time, I just thought ‘oh it’s just this thing called Down’s Syndrome’ but looking back it all started to fit into place that ‘blooming heck, that wasn’t a well child laid on my settee.’ So we went down to the hospital, consequently we were in there for 12 days, basically feeding him up and getting him well. I don’t know the exact what’s in his notes, but I would believe that he wasn’t well at all and I think if my health visitor hadn’t come on the scene we could have lost him, I really do.

So in the hospital, were you and Alfie together all the time?

Yeah, yeah. We were together all the time. I had to go down into the intensive care baby unit to use their electronic machine to express milk. So for those 12 days in hospital, Alfie was being cared for, very well. I felt that my needs were sort of ignored, I was just a mum. And I started to get quite paranoid in hospital because I was in a little room on my own with Alfie. Every time I heard people laughing, I thought they were laughing at me. When I first went to express some milk there might have been an ounce there and I thought ‘blimey that doctor’s just tutted, how bad am I? What a bad mother I must be.’ I felt totally inadequate basically. Anyway, and what was awful was the fact that nobody mentioned the word Down’s Syndrome. I was Mum, Alfie was ‘baby’ and I thought ‘do people know?’ I really thought that people didn’t know. And I don’t know I just had awful, I was thinking ‘oh people are laughing at me because of my age and oh they’re laughing because ‘she shouldn’t have been having a baby at her age anyway’ and all these things, honestly were going through my mind and it was awful.

And after about a week a doctor came in and he asked me ‘how do you feel about having a baby with Down’s Syndrome?’ And I thought, and it made it real then. And I said ‘well, to be honest I’m a bit unsure about my future’. And he said ‘well nobody really knows what’s round the corner and life isn’t easy for any of us’. And I thought ‘well I know that because, you don’t need to tell me that!’ Anyhow he suggested writing things down. He said ‘have you thought about writing things down?’. So I did, so I started to keep a little journal and I wrote a letter to a magazine. And I wrote to the Gazette about my experiences. And it was the health visitor who sort of, I think to take my mind off it a little bit, she said ‘Linda why don’t you think, there’s nothing out there, why don’t you think about setting up a support group?’ So I wrote to the Gazette about my tale – that was publicised. And then suddenly I thought, I was on that sort of, not a roller coaster as such but like a treadmill of learning more about disability and accepting it.

And then with the breastfeeding I was absolutely heartbroken that I wasn’t breastfeeding and then this other trainee doctor came in and he was lovely, he had a sense of humour, he made me feel quite normal and he said ‘oh my wife had a problem breastfeeding’. So that made me feel ‘oh there is other people have problems out there, whether they’ve got a child with Down’s Syndrome or not’. And he said ‘oh all she did was express milk into a bottle and then the baby, instead of getting formula was getting her milk.’ And I thought, ‘well why didn’t I think about that or why didn’t anybody sort of suggest it?’ So simple. But when you’re sort of in the thick of it and you are depressed or you are grieving or you are, you know, just going through that emotional, it was awful really. And just the simplest things, if they’d been suggested would have made such a difference. But I think sometimes people presume that because you’ve had two children already, that you know what you’re doing. And that isn’t the case, because having a baby with Down’s Syndrome is a total different kettle of fish. i.e they do have low muscle tone, I know that now, and that includes the mouth! It’s not just the limbs, you know it’s everywhere, it could be the tongue, it could be anywhere.

Anyway, going back to the midwife who I was quite disappointed in, she would come and visit for those first 11 days and before I told her about the nappies she was saying ‘oh hi Linda are you alright?’ Well me being as I am, I would say ‘oh yes, fine thank you’. But surely nobody would be alright if you’d just given birth to a child with a disability, you’re not going to be alright, I don’t think. But I pretended I was and I think with me saying that, she thought ‘whoof, I’ll just get on and talk about me own children, or talk about the weather instead of about little Alfie there being this model, perfect baby, just sleeping.’

And I must admit, what I wouldn’t do, going back in time is have as many visitors. You know you feel dead popular and it’s lovely people wanting to see your baby and, but it’s so time consuming and it’s tiring.

So do you mean professional visitors?

No, I mean friends

Friends as well?

Yeah, yeah. I would, you know because people do – whatever your child, whether it’s born normally or with a disability or illness or whatever, you get that many visitors the first few days or weeks, then it all stops! So I would much prefer, if it was my own daughter for instance or anybody is – spread out your visitors, don’t have them one after another, just in case there are any problems. There might not be but just in case, because that takes up your time and I remember one friend afterwards saying ‘eeh Linda when you went upstairs, I actually went over and prodded Alfie because I wasn’t sure whether he was alive.’ So that’s how still and quiet and different he was. (I’ll just look at my notes)

Fine

So anyhow, moving on, when Alfie was about two, that’s when I started doing my talks at the Durham University. And I think it is very useful to talk to professionals from my perspective ‘cos I’ve been there, I’ve had the t-shirt, still wear the t-shirt. Anyway, as time went on, as I said Sam was diagnosed with Asperger’s Syndrome. Alfie at the age of four or five was also diagnosed with Autism, so in effect I’ve got two. I’ve got Helen who’s a young adult, I’ve got my two boys who are like kids from different planets. Absolutely, one at the able end of the spectrum and one obviously with severe learning difficulties and severe autism. So family dynamics are very, very difficult. And I wish sometimes that professionals, and not just social workers, but I wish they would understand more about what life is like. Not just the little half hour snapshot because Alfie is beautiful, he’s endearing but he’s hard work – because he has got a little bit of hyperactivity as well. He’s ten, he doesn’t speak, he’s non-verbal, he’s still in nappies day and night and very, very dependent and probably always will be – which, you know, we accept. But what would be lovely would be to have more support and more understanding from professionals. I can understand, being honest, why marriages split up and I can understand why, when I see in the newspapers and on the news, parents with the children, might go to a bridge and throw themselves off. And I’m only being honest but I can empathise with them because it isn’t easy and people just do not understand. A lot of people are very presuming. For instance, I do live in a nice house, it’s not a mansion and I’ve worked hard. We’ve got a nice house, I’ve got a lovely husband but that doesn’t mean everything’s OK inside them four walls. It really doesn’t. And it doesn’t mean because Mum might be like smiling, might be positive that things are alright because if you read between the lines or have the time for a conversation, people would realise that it just isn’t, it’s very hard. And there is support networks out there but what does support mean?

That’s right yeah, it’s one of the things I was going to ask you actually, is you mentioned when you went into the baby unit first with Alfie, like you said, you know there’s mother and baby and there doesn’t seem to me much meeting for the mother’s needs

There isn’t

Yeah, but what sort of needs do you recognise …….?

What I passionately believe that parents should be offered such as ourselves at the time ten years ago, is some sort of listening service for the mum and dad, and siblings. It’s optional, it’s that you know it’s there for when the right time is, because nobody knows when the right time is for advice and information support; but it’s good to be aware of the way, somebody can signpost it when you’re ready. For instance when children have a genetic condition I believe that they’re automatically given the option of some sort of listening or counselling or whatever you want to call it, but with any other condition, there’s nothing like that offered. You’re just left, you get the label, go away, get on with it. If you need any support, refer on to a social worker but there’s no real support

M Support would be things like information?

F It would just be, I mean if I went to a support group and I’m on the committee of a support group and I’m really proud of it. But if there’s a lot of you, you don’t often want to talk in front of a lot of people about what your day’s been like or … I mean that happens more in a one to one. But in a support group, it’s a group – so there’s not often opportunity to have somebody there where you can just go in to another little room and say ‘look, this is how I’m feeling; are these feelings normal?’ Or it could be somebody in the group who knows where to signpost. Because I’m on this support group but I can’t, I haven’t got the qualifications to literally counsel somebody if you like, but I know that I can signpost them to somebody. But back then when Alfie was born there was nothing like that, there was Down’s Syndrome Association in London and I think there was one in Newcastle but that was the

M It’s quite limited really

F so quite limited. There’s more now, thankfully. So yeah, I think other family members must be taken into consideration not just that, the person with the label. Because at the end of the day he was being looked after, he’s none the wiser, he’s a baby but everybody else, I mean poor Helen, she must have thought ‘well hang on, me Mum’s pregnant, why isn’t she mentioning to me because I’ve overheard the story but Mum hasn’t mentioned that my brother might have Down’s Syndrome’. And when he was born, he was just a baby. And he was.

M I mean it was interesting what you said before about when the midwife came round and knocked on the door with the results and you said you didn’t want to sort of like tell your family and friends. What was the decision behind that – was it because you thought ‘oh I’ll be able to soldier on or …’

F Well I wanted to soldier on because I am quite a strong character and I just didn’t want any sympathy

M Right

F And that’s what I would have got off a lot of people. And I just wanted to go on and enjoy my pregnancy as best I could. I mean I did have my moments where I just wanted to cry and probably did cry. But again no one to talk to. Yeah that’s what I’ve missed out really, quite an important point. We did have extra scans throughout the pregnancy and I’d said if there was anything there that was really serious, I might have to terminate the pregnancy. You know, say it was very serious, heart defect or… that’s my thoughts at the time. Anyway but then I started having nightmares thinking ‘blimey, after these scans we’re having, if summat shows up, and I’ve over 20 weeks pregnant, will I have to give birth?’ And it really did prey on my mind. So one day, Sam was asleep at home and I rang up the hospital, I said ‘I need someone to talk to, I’ve been told there’s a 1 in 20 chance, I’ve got no one to talk to and I’m worried sick that if one of these scans shows up something really serious and we decide to terminate, can you put me to sleep?’ Basically, can you give me, you know what I mean, an epidural and all, not epidural even, a Caesarean?

M Caesarean right

F And they said no they couldn’t do that because it’s more risk to you because it’s a serious operation, you’d have to give birth. So I was left to think ‘oh my God if any of these scans show up anything serious and that’s our decision, I have to give birth to a live baby?’ Anyhow the lady on the end of the phone at the hospital was lovely. She said ‘ah if you want to come down, come down’. I said ‘well it’s not as easy as that, I’ve got Sam here, he’s asleep in bed but I just need my questions answered basically’. So it just shows that people do need someone at the end of the phone or … But I’d lost trust in the midwife by that point ‘cos of the way she broke the news; the way she made it all so negative.

M You know the health visitor, the person who came to visit you, was she not able to sort of answer your questions about those concerns?

F Well she was only around for so long

M Right, I see

F She probably could have, but once we’d been admitted to hospital, and we came home I can’t remember that she was still on the scene. Because I think they’re only there for so long, a certain chunk of that time. But she would have been the ideal person, yeah, but again your thoughts aren’t clear at the time at all, so yes that was really hard that um, who could I talk to about my concerns, because there was nobody.

Anyway looking at Alfie, Alfie was born with Down’s Syndrome but it was also found that he had a hole in his heart which is quite common in children with Down’s Syndrome. So he had lots of tests and things to see whether they could do the surgery through his groin, you know it’s quite complicated but rather than doing the open heart surgery, they were hoping they could do it that way but after going up to Newcastle the hole was bigger than what they thought here.

So anyway to cut a long story short, we knew that Alfie had a hole in the heart and it would actually need open heart surgery and they would prefer to do it before he went to school. So it wasn’t urgent, the hole was there but all babies are born with a hole in their heart apparently, but it closes up itself. But Alfie’s didn’t, but I remember it was the 5th November which was bonfire night and we got a call from Newcastle, this was a Monday or a Tuesday, saying ‘we’ve got a place on Friday for Alfie to have his operation’. And I thought ‘can’t do it, can’t put him through major surgery because there’s nothing wrong with him, he’s a healthy boy, he’s fine’ because there was no obvious, there was no breathlessness, there was no, nothing, but it was something that had to be repaired. But what was great at Newcastle, they had sort of an in-between person, can’t remember what her role was, well what the name of the role was but basically she was a go-between to ask any questions. And she said it’s perfectly normal how you’re feeling, if Alfie was like, if you felt he was really ill you wouldn’t hesitate, ‘cos his appearance and his you know, basically healthy child, it’s much harder to make that decision to go for surgery and I said ‘well I’m worried about Helen and how do we involve Helen in all this?’ And she was so good, she was absolutely fantastic for advice and support and ‘oh the surgeon you know is one of the best that you could wish for’ and really made us feel at ease. So anyway we went off to Newcastle for surgery, had the surgery on the Friday. By the Sunday lunchtime he was up and running around as if nothing had happened. It was absolutely amazing. The only thing we had to be careful of is how we lifted him, because of the big scar on his chest. But it was amazing. ‘Cos when they are sore, they appear poorly because they’re all wired up and you know they’re asleep and you think ‘oh, is he ever going to be Alfie again?’ anyhow he soon was, probably sooner than what we’d have hoped, ‘cos he always has been quite a livewire. So that was quite traumatic to be fair. You know, any child going through surgery, but I think Sam had prepared us a little bit because he’d had a couple of minor operations so we’d got used to that sort of thing about going to the hospital, signing forms and having operations explained etc.

Other things that Alfie’s had to endure – an eye squint, he’s had surgery on an eye squint but again no problems, no qualms with any of the staff, all absolutely lovely. He’s had grommets fitted in his ears. At one point we did think he was deaf and that came from a professional, told me that it seems he’s profoundly deaf so that was another hurdle. I thought ‘oh, bloomin’ heck’

M So how old was Alfie when?

F Oh he was quite young, he was about three, BECAUSE that was the autism setting in. ‘Cos he’s so focused in his own little world, he would just ignore everything else no matter how loud or quiet, he would just focus on what he wanted to focus on and usually it would be something he wanted to twiddle or sort of a reflection in a mirror, or something quite, so yes so that’s. And even now if you met Alfie you would think he was deaf because he doesn’t reply to his name, doesn’t wave, doesn’t point. But he isn’t. He can hear a sweet packet open like the best of children out there! So there’s certainly no problem with his hearing.

He’s had no chest infections which children can be quite prone to with Down’s Syndrome because all the sort of airways and the make up of the face and ears, nose, everything is quite different to ours; but back end of last year bless him, he did develop pneumonia. And that’s the first serious illness we’ve had with him so I feel quite fortunate about that. Yeah but it wasn’t nice and I’d certainly know if he was going along that route to get pneumonia, what to look out for i.e the way he was breathing. Yeah, now that we’ve been through it I’d know what to look out for, the signs and get him to hospital sooner.

But … but yeah, he’s absolutely beautiful, all my kids are beautiful I have to say. Let’s have a look through my notes, that’s about his hearing.

Yeah with the autism, I’m going to blame the autism not the learning difficulty, he’s got no sense of danger, absolutely none. And a sort of kick up the backside for me and dad, basically, was the day that he jumped out of his bedroom window, and survived thankfully – it was a miracle. It really was. Alfie has an obsession with water, absolute obsession, it could be a puddle, it could be taps, it could be a pond, it could be his own wee, ANY sort of flow of water or even stagnant water, and we didn’t really realise how bad it was until this day. It was a day in June, 13th June and it was some famous footballer on the telly, can’t think who it was now. Anyway, I’d put Alfie to bed and it was a really, really hot day, we’d been to South Gare for the day so I was red raw from the sun. Anyway I put Alfie to bed, went up to check on him, opened his bedroom door and I must have just slightly, he was probably just almost asleep, as I’ve opened the door I’ve woke him up, but didn’t think I’d woke him up fully. Anyway I went downstairs, sat on the settee with my half a lager and bag of crisps, thinking ‘oh I’ll watch the second half of the football’. Mark was out because he was out every Sunday night (yeah football must have been a Sunday). Helen had left home at this point but she was there. All the windows were open because it was such a hot day. So I’d just sat down, the sprinkler was on outside, the garden sprinkler. Next thing I heard was an almighty thud. I jumped up, looked out the window and there was Alfie on the ground. So I just screamed to Helen ‘999’. I just screamed and I ran outside and I just scooped him up off the floor and he was limp, he was unconscious then basically. I started going absolutely berserk. My neighbour came running round ‘Linda, Linda what’s happened’ and I explained. She said ‘Oh Linda you shouldn’t have picked him up, with a fall or anything you have to leave them.’ I said ‘I can’t, I couldn’t have left him on the floor, he looked like he was dead’. So anyhow I picked him up ‘cos I was like really, I’d gone hysterical. He came round. Anyhow the ambulance came so quick, so we rushed off to hospital, stayed there till the early hours of the morning. Mark came along and like I say it was a miracle, all he had was a black eye. BUT he hadn’t fell out the window, he was on a mission, the water! And that’s what really made us realise then, bloody hell, do you know what I mean? He has got NO understanding of danger whatsoever. ‘Cos I didn’t really know a lot about autism at the time, you know I’ve had quite a learning curve, quite a steep one. Yeah so it was, it was a miracle the fact that Helen was there, the fact that I’d sat down, ‘cos normally kids are in bed you sort of potter round. I’d heard him fall. Where he fell was a miracle because it was wet with the sprinkler, he’d missed quite a wide part of the paving underneath the window, he’d missed the open window downstairs, which could have been fatal couldn’t it, landing on that? He’d landed in my border which had cobbles, not little pebbles but cobbles and then there was a gap of nothing, just like mud if you like and then more cobbles and his head landed in that soft gap. It was amazing, absolutely amazing

M It’s incredible that

F Yeah, so obviously since then we’ve had to put a lot of things in place at home and at school, respite, everywhere he goes to ensure his safety. Because he would run off and as he’s got older he’s got quicker, as he’s got older he’s got stronger. I mean he has got out of the window once since, and that’s with his dad, it could have been me. That’s why we hesitate who we leave him with. Because if things like that happen with us, it, you know it could happen even more so or maybe not, ‘cos I guess if you leave somebody who you trust, leave somebody with somebody that you trust, they’re probably, I’m not saying they’ll take more care, but they’ll probably shadow him more than a parent. I don’t know, but we have to be so careful really that people understand Alfie’s needs because even Helen, his big sister, ‘cos she’s left home she’s become more like an auntie and even if she holds his hands when we’re outside she doesn’t understand still, if she doesn’t hold his hand tight, he’ll let go and he’ll be on the road. So he’s, he is hard work and what makes things harder at home is the fact that him and his big brother are so different. We acknowledge that. You can’t force people to get on, you can’t force people to play and over the Christmas holidays, it’s been hard because one person said to me, ‘Linda, what went wrong?’ meaning ‘What went wrong in the family’, ‘why do your two boys not get one, why don’t they play?’ and that was a family member. And I went to bed with those three words …. ‘what went wrong?’; thinking ‘is it me? Am I a bad parent? What have I’ I don’t know but it’s not nice to hear. But again it’s just people don’t understand and it is hard. I mean they’re all fantastic kids, but so different. But me and Mark are getting on with what we’ve been dealt. It isn’t easy but we love the kids

M What are your hopes for the future?

F For the future, Helen is quite happy, she’s single, she’s working at the hospital, she enjoys that.

Sam has just started senior school. He’s coping very well. I think if he’s understood by everybody there’ll be no problems. Because he’s a little bit quirky. He is a little bit lacking common sense sometimes but very intelligent in other areas. So I don’t really worry too much about his future. I think he’ll end up with a fantastic career, as long as people understand him that he’s not sociable and just to be understood.

Alfie, to be at school till he’s 19 and he’s in an absolutely fantastic school at Redcar, a special school. Haven’t given a lot of thought as to what will happen after that, but he won’t be at home. You know I’m 50 this year, and it’s only natural that children grow up and they leave home. So we have to sort of find a sort of lifestyle for him and there is options out there. Admittedly a lot of them are out of area, which is a bit of a shame, but no, I just hope Alfie continues to be so happy. And he’s a pleasure. And I don’t regret a thing. And anybody who’s out there who’s going to have a baby with Down’s Syndrome, ‘cos I understand Down’s Syndrome, celebrate – go out and celebrate. Because I wish I had, I really do, because he’s brought so much … I’ve been to things like, for instance ice skating at Billingham with Alfie, except you can go on with him in his buggy or a wheelchair and I can go in with my flat shoes on and it’s inclusive. It’s something that you wouldn’t think a child in a wheelchair would be able to do, but they can. I’ve been cycling with adapted bikes with Alfie which is fantastic. I’ve been to the Calvert Trust and that’s an organisation that do sports and they challenge. They won’t say no to anything. So Alfie, despite his obsession with water, has been canoeing, he’s been sailing and I think he’s lucky because he’s got me now, I like to do all these things so .. he’s been on this fantastic zip wire – I’m at the bottom, he’s up there getting harnessed and ‘wheeee’. ‘Cos I know what he enjoys, do you know what I mean, and he is an active boy, but that’s when he’s at his best. Yeah, so we’ve and I’ve met some lovely people, I’ve helped a lot of people, so yeah, we’ll see what the future might bring.

M If you were to give birth to Alfie now, and knowing what you do know now, do you think things will have changed? People’s perceptions of children with Down’s Syndrome, how they treat you and

F Alfie little bit

M Yeah? Alfie little bit

F A little bit. Yeah I mean to be fair, I think because Alfie is so endearing, he’s so innocent and ‘cos he doesn’t talk and things, he seems younger than what he is. We’ve had very few adverse comments or tuts and things. You know, say ‘cos I’ll be like, see if he’s thirsty, he’ll just take a drink so it could be a family sat there you know having a few, you know Capri Suns or whatever and Alfie …. I’m thirsty, there’s a drink, I’ll have it. So there I am apologising profusely and most people when they see it’s Alfie, they’ll say ‘it’s fine, don’t worry’. A couple of times I’ve had like people, ‘cos he can be quite loud, vocally and so, and it’s understandable, if I had somebody suddenly screech or go ‘eeeeeee’ behind me I would look. And I accept now that in the early days you’d think people are staring – but a lot of the times they’re not, they’re curious for whatever reason. ‘Cos I will, if there was somebody over there with a child with Down’s Syndrome I would be DYING to go over and say ‘hello’ but I’d be looking, thinking ‘should I or shouldn’t I?’ and I’ll be seeing what their child. And it’s like with any child growing up you do, you don’t intend to compare but you do, you sort of look and see what’s similar or what is dissimilar. But I would hope things have changed. The main, I don’t know I think the autism is the hardest part for people because it’s a hidden disability. So I think that’s the hardest part for people to understand, you know a child who’s past that, SHOULD be past the age of tantrums, is still having them. And people think that’s bad parenting and it isn’t. It’s just that child has got a lot of complex issues going on in their brain, especially round sensory things. So I would hope for more awareness really about autism in the next ten years.

M Yeah. Do you feel that people THINK they’re aware of autism, ‘cos it does get quite a lot of publicity doesn’t it?

F No, people think they know because they’ve seen Rain Man or, and that’s … it’s a spectrum and they’re all so unique, so different. It’s fascinating, absolutely fascinating but complex, yeah you can’t just say, you can’t just think you’ve read a book or you’ve seen a film and understand it. You just can’t, no it’s quite, it’s amazing. So yeah life is difficult but challenging, rewarding, interesting, keeps me going.

So yeah, I’ll just check my notes so I haven’t missed anything.

Yeah, one thing I’d like to say is once Alfie was born and I’d got over all that grieving, accepted my child with Down’s Syndrome and looked forward to teaching him, I bought all these resources to help teach him, everything, colours to speak, matching pairs, everything like that. And then when he was diagnosed with autism, I had to go through all that grieving again, ‘cos I’d lost that child with Down’s Syndrome and a child with autism is a total different kettle of fish. So I did go through a little while of thinking ‘I want a baby with Down’s Syndrome only’. Because I’d really got my mind set on that, and I think my aspirations were a little bit high so I had a long way to fall. But yeah I did go through a period of grieving again once that diagnosis

M Did people understand that?

F Professionals did

M Yeah

F Some, like Alfie’s psychiatrist did. The community nurse understood, but no lots of other people don’t. And grief is a complex thing, you know ‘cos men and women sort of deal with it quite differently so, but no

M You said your husband didn’t quite understand …. at the time?

F Well, he did obviously he was there when we got the diagnosis of autism but I think to Mark, it was just Alfie, no matter what the label, which is a good way to look at it, where I was thinking more deep, thinking ‘oh I’ve learned all of that about Down’s Syndrome now I’ll need to go and learn more about autism’. Where Mark just, I think, lives more day to day, just gets on with it. Yeah. I think some men sort of might, ‘cos I know a lot of families, some men sort of put their head in the sand to ignore it, other families I’ve met, grandparents can be quite a challenge because they tend to ignore it, think it’s going to go away. They’ll say ‘oh one day it will, you know he’ll meet a lovely girl and get married.’ But some children it’s obvious, I mean Alfie probably won’t to be fair. But I think sometimes grandparents want to make it better, they want to fix it. And that’s quite hard for the mum or dad sometimes – ‘cos deep down you know it can’t be fixed

M Grandparents are sort of like trying to put on a very positive front

F Yeah some put on a positive front and some I’ve come across totally ignore it, ignore that child. And again it’s probably their grief and no one to share that with; that ‘hang on do you realise what you’re missing out on, it’s a child’. But sometimes whatever, it could be something that’s happened in the past or…. So relationships can be affected in lots of ways. I think, I mean we’ve only got Mark’s mum, grandma and she was quite tearful in the early days, sort of rushed us out ‘cos the Salvation Army were playing in the street, ‘come on, bring Alfie out’ as if you know, something was going to cure him. But she’s accepted him, yeah. So yeah, it’s quite a journey but could have been better IF there was more positiveness at the beginning. It’s too negative, this thing about disability just equals negative thoughts and actions.

M ‘Cos you obviously recognise potential, you know in obviously all your children but because there are very special circumstances as well, there’s got to be special considerations but you can still have that sort of vision of what these children can be like in the future as well, yeah?

F Yeah, yeah honestly children with Down’s Syndrome are beautiful. And they are all so individual. I mean I’ve seen little girls of about say 11, and they’re proper flirts. And they like to wear all the clothes like Girls Aloud, just like any other 11 year old. But they might not talk very clearly, might be a little bit slower, some on the what I would call Down’s Syndrome spectrum, some of them are more, probably more able than some people without that label. Because you know some have gone to university, not many, some drive, some do get married. So you never know, you never know with that child that might be born with Down’s Syndrome, what’s ahead. Nobody does do they?

M No

F With any child? Nobody knows what’s ahead. I’m at a funeral tomorrow, of a young lady who’s just died, 16 and I’m, when people sort of complain about the children, not in a negative way but in whatever way, I think ‘well, they’re still here. The main thing is that they’re here’. So make the most of every day. Yeah.

M Well I think that’s a good positive message to end on because I know you’ve got to go, somewhere else you’ve got to be. So, thanks very much for sharing that experience with us

F You’re welcome

M We really appreciate it.

F You’re welcome

Heather’s Story

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Transcript

I lived in Rugeley in Staffordshire, I retired early from the civil service job centre network but returned for temporary and short term contracts. Heather actually worked for the same organisation and we were working in the same office at one stage. I’d been to college to learn bookkeeping and accountancy with a view to going self-employed. I already had two clients with a number of other promises. Heather enjoyed gardening and socialising and we owned a mobile home in Somerset that we visited for holidays and weekends. We also holidayed regularly with our cousins in France, all over the place. Running was a big feature in our lives. For many years as competitors, coaches and race organisers. I competed in races up to marathon distance and also took on triathlon events involving swimming, cycling and running where I won a number of age group prizes. I even ran 101.5 miles in 24 hours to raise money for equipment for the local hospital. Heather and I started a senior women’s section at our local athletic club as they only had one senior lady member when we began and we built up a quality team which went on to win a national cross country title at Sunderland. We also fostered a second group for beginners and social runners and we averaged about 45 or 50 members in total. Annually we also organised a running event for the British Lung Foundation, attracting several thousand runners and raised thousands of pounds for that charity.In June 2001 Heather and I were on holiday with friends in Spain. When we got back, early one morning about two days after we returned, Heather complained of a pain in her left hamstring and I thought that might be a muscle pull because she’d been to aerobics the night before, a very get fit lady! The pain got worse so I had a look at it and I noticed immediately that the left leg was cold and discoloured so, after giving Heather an aspirin, I telephoned NHS Direct and following consultation with a doctor they arranged for immediate transfer to hospital. Following tests the doctor confirmed that there was a significant clot in the leg and she would have to be admitted. I remember the doctor describing this as ‘fairly extensive’. I didn’t realise, it certainly didn’t register at the time that this was potentially a very, very serious situation. Two days after she was admitted, a catheter or filter was inserted in the main artery in the neck which would stop any pieces of the thrombosis breaking off and entering the heart or lungs or brain and potentially killing her. The filter would normally be inserted in the groin but this wasn’t possible due to the position of the thrombosis because it extended from the upper thigh right into the lower stomach area. The surgeon had three attempts to insert the filter and a haematoma subsequently formed as blood leaked into the neck. Heather’s neck became badly swollen and subsequently she found difficulty swallowing. She couldn’t eat and held ice cubes in her mouth to let them melt and the water trickle down her throat and they put her on a drip to compensate for that and put her in a high dependency area. Mind you, she was still the life and soul of the ward and was trying to cheer other people up.At seven o’clock the next morning, I had a phone call from the hospital saying Heather had taken a turn for the worse. When I arrived, I was told that she had suffered a respiratory and cardiac arrest after the haematoma had cut off her airway. Her heart took 20 minutes to restart and a tracheotomy was inserted to aid breathing and, following that, she was transferred to the critical care unit. For the next five days Heather remained very poorly and I stayed at her bedside 24/7 holding her hand; brain scans were taken which showed massive brain damage with very little brain activity and she was in a state of constant epileptic seizure. It was indicated by her consultant that she was unlikely to recover fromthat position. Heather’s elderly parents came to see her during this time and decided that they wouldn’t visit again as it was too painful to see her as death was now inevitable. On the 6th July she was moved from the critical care unit to a side room on a ward, set aside for terminally ill patients. It was confirmed by the consultant that Heather had no hope of recovery and the best action would be to let her pass away in a dignified manner.She was still fitting severely and the fits showed no sign of abating although controlled by drugs. It also seemed unlikely that there was any higher brain function. Following a meeting with the family, the decision was made to withdraw support and to allow her to pass away quietly. So antibiotic treatment and feeding by nasal gastric tube would be withdrawn and her file marked ‘not for reventilation or resuscitation’. The following day Heather was anointed by the minister from the hospital chapel and this is a sort of ‘saying goodbye’ ceremony. For the next week, myself and the family sat vigil at the bedside holding her hand and talking to her and during this time we were asked if we wanted to take her home as she could be in this state for days or even weeks before she eventually got a lung infection and died. Also during this time Heather developed lots of eye flickering which was disconcerting. The doctor reviewed Heather and said there was nothing in it, but I was not convinced or didn’t want to be convinced.On the 13th July, I was sure that she squeezed my fingers. It happened again the day after and then she seemed to squeeze my fingers on demand and so we were quite pleased about that although obviously we didn’t know what was causing it. But then she got her smile back, despite the fact that she was unconscious, she was smiling. We called the doctor and on request she gripped his hand and he immediately called for reintroduction of feed and antibiotics and agreed to review the situation after the weekend. After the weekend, we had two visitors. The doctor came and, seeing the improvement was still evident, ordered the introduction of an aggressive rehabilitation policy. The minister also dropped in and said it was the nearest thing to a miracle that she had ever experienced.Only recently in a conversation with Alison, her senior carer, she said ‘I died didn’t I?’ and after a pause and a thought she said ‘I died, but I didn’t like, it so I came back’.From July 16th until September 3rd, Heather remained at the hospital where she continued to make progress and she was then transferred to a nearby rehabilitation unit where she remained until her final discharge on March 4th, 2002.The experience had an adverse impact on my health. During the initial two months in hospital, I had lost two stone in weight and clearly not at my best. When Heather was moved from the critical care unit to the main ward, I would go home late in the evening after ensuring she’d received her last medication and return again the following morning. Because of staff problems, it was often well after midnight before she had the medication and I left for home. It was on this trip home in the evening that I planned my suicide when Heather eventually died. The road home took me through Forestry Commission land and this had many twists and turns and at one of these turns I would close my eyes, press hard on the accelerator and I couldn’t fail to hit at least one of the trees. When I got home, I couldn’t sleep, worrying about Heather. I felt so depressed that I took to alcohol in a heavy way which gave me a couple of hours’ oblivion before I showered and dressed and returned to the hospital early the next morning.One day while showering, I found a painful lump in the chest area and arranged to see my GP. He was sufficiently concerned about the lump to refer me to a breast cancer specialist. Unfortunately the specialist turned out to be the consultant in charge of Heather’s care which left me with less than 100% confidence in his ability and, that apart, I think it was a very poor decision in itself. Eventually however, after mammograms and biopsies I was declared clear.The news eventually that Heather could go home was great and to begin with we were offered daily home support and visits to hospital rehabilitation day units three times a week. However, when we got home, the hospital said that it could only provide two half days a week because Heather was no longer an in-patient and as a consequence many other facilities were no longer available to her, one of which was the therapy pool which was an experience that Heather really enjoyed. She would go to the rehab unit by ambulance bus along with other clients and, because she was one of the first on, it would take about 60 to 90 minutes to get to the hospital. The return trip was similar. So this became a very tiring and often traumatic experience and as a result she would invariably have epileptic seizures on her return. To make matters worse, she did very little while she was at the unit apart from occasional physiotherapy. I went in several times to find her sitting alone at a table with a magazine open in front of her and no ability to turn the pages. No home assistance could be provided at the weekends and only 45 minutes in the morning and 30 minutes in the evening during the week. So apart from washing and getting her up in the morning and putting her to bed at night, I had to look after her 24/7 myself. After a while, I even cancelled the evening input because Heather was invariably tired well before that and needed to go to bed. So I would do that myself and even when weekend support was added in, it was often late not by minutes but by hours or didn’t turn up at all. A few days after discharge, we received a letter from Heather’s social worker; it was actually her third social worker in the nine months she’d been in hospital saying that she had relinquished responsibility for Heather and that the local authority would take up the role. It never did. Nor was there any planned follow-up review with her consultant.Home life as you can imagine, was very difficult. I had to convert our ground floor dining room into a bedroom; unfortunately this room was long and narrow and could only just house two single beds side by side. At night, I would have to bring this second bed down from upstairs for myself and put it next to Heather’s. Heather was severely and doubly incontinent, a fact that the hospital had failed to inform myself and required hoisting on to a commode several times during the night. To do this, I needed to strip my bed off and remove it in to the next room, using the hoist, transfer her from bed to commode and complete the toileting (which was usually too late) and I had to do washing and cleaning before getting her back to bed again and then reinstating my bed. During this procedure she would often have epileptic seizures because the hoist was not her favourite mode of transport. Heather had virtually no use of her limbs; she couldn’t bear weight and couldn’t grasp anything. Her left arm was almost totally useless so everything had to be done for her including feeding and drink and all the usual domestic services. Obviously a stair lift would have been a tremendous help because we could have then got her into a proper bedroom with a bathroom and access to a double bed and showering etc. but no real home assessment was made and, in discussions with the occupational therapist, we were told that Heather would have to go on a waiting list if we needed a stair lift and it would be about six months before she could get on to the waiting list and from that point 12 months plus before they could provide a stair lift for her. Unfortunately we received no support during
this time from being assessed as needing 24/7 care, brief daily input provided little respite for us. Simple operations like washing her hair I would have to carry out myself using the hoist. We would hoist her on to the edge of the bed, supported in the sling and put with her head just hanging over the edge of the bed, supported, put a bowl underneath and then wash her hair like that, you know. Obviously that was a traumatic experience in itself.It all proved to be a horrendous experience, capped on March 14th when I went to our GP’s surgery to get a repeat prescription for Heather’s medications. In front of a busy surgery reception, I was told that they couldn’t comply as the hospital had informed them on the 10th August in the previous year that Heather had died! As you can imagine, I almost collapsed on the spot.We were getting desperate, as you can imagine, until one day we had an offer that we couldn’t refuse. Heather’s sister lived in Northumberland and she talked to the Northumberland Head Injury Service who said that they could provide a full rehabilitation package if we lived in their catchment area. So, with little thought, I took the immediate decision to move, even if we had to rent property. By August we’d moved to Northumberland having sold our previous home and bought a replacement albeit, unsuitable property in Bellingham, but it got us into the catchment area. The Northumberland Head Injury Service set up an extensive care regime for Heather and myself that included complete care package seven days a week as defined by Heather and myself; occupational therapy including access to necessary equipment for home and in fact we had two occupational therapists at that stage, one from the service and one from the local authority. She was provided with physiotherapy; she was provided with speech therapy, psychological therapy and rehabilitation group sessions where they actually got down to doing things. And obviously access to a consultant on a regular and on-demand basis. For someone who wouldn’t survive, she now looks remarkably well. The effects of the brain injury are still evident: in the main, cognitive problems, difficulty with attention or concentration, memory problems, difficulties with problem solving – we don’t give her a range of choices – it’s often, at the most two or perhaps even one where she can say yes or no. Difficulties with problem solving and obviously taking longer to think about things, so you know, you don’t rush her, just let the process work. Loud noises also upset her tremendously such as low flying jet fighters that we do have over this property from time to time and she gets easily fatigued. All symptoms of brain injury. She still suffers significantly with epilepsy but in the main that’s controlled by drugs. However, now she can feed herself and particularly on the good days, she helps the carers to dress her and she can also put on a bit of makeup. She goes to the local gym twice a week and for someone who would never walk again, she does exceptionally well. She can now get about obviously with assistance, myself or a carer and she can even manage a few steps. Heather continues to improve and astound us all.And how are things now? With Heather’s improvement you would think we were absolutely delighted. However, since Heather left hospital friends and family assume that all is well and we no longer need their support. Nothing is further from the truth. We know lots of people in the area but we have no real friends apart from the carers and I must say that our team of carers are the most important people in our lives and we couldn’t survive without them. All this has had a major impact on our lives. We have lost all the intimacy of marriage – I’m no longer a husband but a carer. Heather has lost all dignity with having people looking after her all the while and the presence of carers means that we have no privacy, although we wouldn’t do without them. I take medication for depression, angina, high blood pressure, hiatus hernia, gout, high blood cholesterol and low bone density. I’ve had two minor strokes and recently had a replacement hip operation. I’m an alcoholic and have suffered a general loss of fitness and increase in weight. Oh yes, our problems are all over.