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Bēhance

The Hidden Patient

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  •  Alzheimer’s Disease is a deteriorating brain affliction that attacks the memory, judgment, personality and communication functions. It offers no hope and there is no cure, only the knowledge that it will be a slow decline into forgetfulness and incapability. For the individual, this is obviously a frightening time: they do not remember where they are, what they are doing or who are these strangers that surround them, even though those strangers are their family and friends, the loved ones that they’ve cherished their entire life. As they slip further into disorientation and confusion and as they frequently forget that they even had a family, their relatives remain painfully aware of the situation. They experience a long emotional and physical journey on which they undergo the psychological distress of watching a loved one slip away; they experience grief from the first diagnosis and from when the first grandchild is forgotten; guilt as they fear they are abandoning the sufferer by putting them into care and when they realise that they have become the parent; anger and frustration when the sufferer won’t co-operate with them anymore and ultimately distress as they have lost the support and love of someone so important to them.
    Alzheimer’s Disease affects every member of the family: they must all confront this without choice, it is ‘the family disease’ and yet the family is hardly given any support, solace or even recognition. When we talk about Alzheimer’s Disease, we speak not only of the patient but of the family: the hidden patient. Over 600,000 people in England alone suffer from some form of dementia: that’s a vast quantity of families who need support or even acknowledgement.
    The stories that follow offer a glimpse of the trials these three families must face. The compassion they have; the dedication they had; the love they lost; the sadness they face; the pain and the brief moments of recollection they share. It aims to provide information and understanding, to provoke in the reader some compassion and empathy. But most of all it aims to inspire the reader to appreciate, respect and love their own family.

    This project was made into a hard copy and E-Book version by SnakeSkinStudios, available on Blurb. Also a video available on Vimeo

    http://www.blurb.co.uk/my/book/detail/3176685
  • Deb and Murry
    ‘My father was diagnosedabout two years ago. He had a series of mini-strokes which started to take hismemory, but he was still capable of getting around. It was just little thingsthat he would forget: he went to the doctors and they diagnosed him withAlzheimer’s Disease. It was then a kind of waiting game. All of a sudden about18 months ago he had this major stroke and was in hospital for about a monthand then he came here. Ever since then he has just slowly deteriorated. He usedto be the opposite of what he turned out to be: he never swore; he was alwaysvery kind, always putting everybody else before him; never angry, never cross; verylaid back. Now he can swear at you, he can get angry, and it’s very strange tosee him go the way he has, from never saying boo to a goose, being laid backand nothing ever bothering him to how he is now. I don’t like it; I wish astroke would come and take him away, because there’s no dignity in this. We’vebeen before when he’s been dribbling and there has been blood and it’s not niceto hear him shouting at you when he’s never shouted in his entire life.
    My dad used to grow runnerbeans; he had wigwams and I used to sit inside them eating the beans andshortly after his major stroke that’s where he believed he was, he believed hewas picking these beans and I was inside as a child of about six or seven, so Iplayed the fantasy with him and got told off by the doctors. They said, “No,you can’t do that, you have to keep him in reality,” so we tried but he used toget so angry, he was here in his garden digging up his potatoes and so wethought, “What’s the point in making him angry, we might as well be in thegarden with him.” I don’t see why I should upset him, if’s he’s down thecricket field then I’m down there with him. I don’t have to tell him he’s in ahome now. There is this guilt that you’ve put them in a home but we weren’tgiven any choice, when other people go and realise that we didn’t have anychoice it helps in a way because you don’t have to justify yourself. You justhave to accept it, what you say to other people, I don’t know. Sometimes talkingabout it helps, to know you’re not the only one dealing with it but I don’tthink you really think about it; you just have to plod on really.’

    Murry passed away shortly after christmas 2011
  • Kathleen & Albert
    ‘When my husband first started with this Alzheimer’s,he was ever so forgetful and would get really het up and he would say to me, “I’venot go to do that, I’m not doing that” and gradually he got worse and I had tohave carers in. They used to come in the mornings and dress him and in theevening they would put him to bed. After a while it got worse still, he was upin the night and shouting at me to get his toast and tea. I had Albert at homefor two years and he got really aggressive at times, he’d get his fists up toand ask if I wanted a fight - that’s something he would never have done before.I was up nearly every day and night with him and it was getting me down. Thenhe had a stroke and had to go into hospital, from there they said, “You’d nevermanage him again, not on your own” and so from the hospital I had him broughthere, because I got to rock bottom. I just couldn’t cope anymore. He’s been inhere two years last Christmas now. He was always good and would do things forme, then he got really awkward and always wanting to go out, we lived on the mainroad and I was always frightened of what might happen to him. One carer came inthe day he had this stroke and said to me, “You’ll have to watch him all today;don’t ever leave him.” So I had to try and take him and do whatever, but whatcould I do? I said he gets violent at times and that’s why I can’t manage himon my own, so they said the best thing to do would be to get him in a homesomewhere and this is the only place in town that will take Alzheimer’s patients.I think if they get too bad you have to put them in somewhere, because you justcan’t cope on your own. I haven’t got to fear at the moment cause he’s beinglooked after, but I could never ever have him out of here on my own again. Wewere really happy until this all blew up. He does have his good days and otherdays he doesn’t want to know me and it upsets me to think back to what he waslike and what he’s like now. You have to think, it’s like trying to make somethingout of nothing. But these Alzheimer’s patients, one’s not like another. I thinkeach one is different; some are quite good and some aren’t, so you just have totake them as you find them.’

    Albert passed away in August 2012
  • Jill and Irene
    ‘It started about threeyears ago when my mother’s speech started to go. She would get frustrated; sheknew what she wanted to say but couldn’t remember the words. We took her to thedoctor but they weren’t very helpful, they started to do a few memory tests butit was so slow going we didn’t get anywhere. It actually took about two yearsbefore she got to see a consultant and realised that because of the drink shehad developed dementia. It’s a specific type of dementia caused by the effectalcohol has on the brain. She had various tests and it was deemed she had to gointo a home for her own safety. There was a lot of guilt for me about takingher from her own home and into a nursing home, guilt that you’re doing theright thing. I feel sorry for her really because of her quality of life; if Ivisited her more it would be better. I’m not there for her.
    The hardest thing initially wasgetting the support from the GP. I’m a nurse but it must be really hard forfamilies if you have no medical knowledge of it at all. It’s difficult becauseit’s one of those things where there’s nothing you can do to stop it. Peopleneed to know that they are not going to recover- it’s not something that youget better from, it will only get worse. The hardest thing now to come to termswith is the loss, the loss of my mum-they are there but they’re not there arethey? In effect I have lost her and her support. I don’t think I’ve lost herlove yet, she’s still there for that, I think she can still display it, shestill recognises me and she will give me a hug and a kiss. It’s just the othercontact, the conversation with her that I’ve lost. The most painful time was justbefore Christmas, we went to see her and she was so good and so happy, so Isaid “we’ll take you out in the car.” Got her in the car, took her out and itwas lovely. We got back along the road just before we got to the nursing home,started to turn in and she recognised it and she started to howl in the car. Notjust cry, she was howling as soon as she recognised the home; it must have beenwhen she realised she was going back. I couldn’t get her out of the car forabout five minutes - she just would not move, she just sat there and howled andhowled. Eventually I persuaded her to get out and got her in the wheelchair; Itook her back into the home and up to her room. She howled the whole way there.I couldn’t do anything with her. It was awful, I felt absolutely drained. Shewas so upset. But although I feel awful that’s she’s in the home all the timeand not getting out, I’m never going to take her out again because that timewas so upsetting for us both. It’s not worth taking her out- that howling wasnever my mother.’