One of the most frustrating things about doing this job is that we actually have very little control over how care is administered and managed. We can and do have our say but, ultimately, the decisions are ours to live with but not to make.
Iris has been an absolute beauty. A portrait of her in the lounge of her bungalow shows a woman with more than a passing resemblance to Elizabeth Taylor, right down to those amazing violet eyes. She is now in her eighties and is at an advanced stage of a dementing process. She is no longer able to speak and she can do nothing for herself beyond chew the food that is spooned into her mouth by her devoted son Barry.
I am asked to visit soon after care starts because, frankly, the care staff are terrified of Barry. The reports I have received are varied and bizarre, ranging from the video cameras Barry has trained on his mother when she is sleeping through to the fact that he insists all of the cutlery in the house is wrapped in silver paper in order to deflect the electronic rays that are being beamed into the house to monitor his conversations.
The bungalow is unremarkable, a large corner plot with a neat garden and a pleasant outlook. Barry answers my knock and ushers me into a large sunny living room with family pictures on a baby grand piano and furniture of the Waring and Gillow genre. It is the epitome of genteel and therefore serves as all the more startling a contrast to Barry. He is a small man, positively crackling with nervous energy who is wearing shorts and knee socks and has his hair in a long plait which bounces as he paces the room throughout our conversation. He is not hostile but his speech has the staccato delivery that tells of racing thoughts and what thoughts! He hurtles from subject to subject switching so seamlessly that he is almost impossible to follow. He believes his mother does not have dementia, she is suffering from post traumatic stress syndrome having witnessed a man having his head cut off when she lived in Kenya. He tells me he has been in the SAS and was tortured during guerilla warfare, rolling down his long socks to show me what is obviously a varicose vein as "evidence" of the injuries he received. There are lighter moments where he tells me his daughter is going to win X Factor and darker ones where he tells me that he is recording all of the things said by my home carers because, when he listens to them later, he alone is able to decipher the code words and hidden messages within their statements. I have worked in a mental health setting but even with no prior experience it is not hard to see that Barry is really very unwell, well, let's be honest, he is floridly mad. Having said that, Iris is beautifully cared for and she is my main concern. I just can't quite reconcile myself to thinking that it doesn't matter that Barry videos her all of the time just in case his enemies kidnap her and he tries to make the carers bring rubber boots to wear because his mother's powers are depleted by exposure to electricity.
I return to the office convinced that Barry must be known to local mental health services and indeed he is. He is known to Joanne the mental health social worker who tells me that his devotion to his mother is wonderful and she is very impressed. I control the squeak in my voice as I detail some of the things I have just observed and venture the opinion that Barry is really quite agitated and may not be totally to be relied upon to make the best decisions concerning Iris and her safety. Joanne does not agree, she says Barry is "eccentric but harmless" and when I ask if he has ever had any sort of diagnostic attention she as good as tells me to mind my own business.
She is right up to a point, as far as I can see Barry is harmless, and I get to see him rather a lot. Barry has decided that he loves me (thankfully in a purely platonic way) and he takes to visiting me at the office several times a week, usually with poor Iris in the car or in the wheelchair that he festoons with helium balloons, I hardly dare imagine why. I'm afraid we take to referring to him as "mad uncle Barry" - he burst through the door already talking and he attaches himself to the edge of my desk like a barnacle to tell me all about his news. One day he is a famous artist and has been exhibited all over the World, the next week he is writing his autobiography. I am, as you may imagine, thrilled to hear that I will be featuring prominently in this blockbuster and will receive my own signed copy. He always seems upbeat to the point of mania and I wonder if he has a corresponding downswing in mood, I almost long for it because, short of hiding under my desk when he appears (and I actually do this once or twice) there really seems to be no escape from my unwilling recruitment to Barryworld.
This continues for some weeks and then one day the carers tell me that Barry has taken to tying Iris into her chair. I visit and find this to be true, poor Iris is listing to one side in her chair and is bound up with what looks like a piece of washing line. This is a bridge too far, I ring Joanne and explain and she agrees to investigate. She rings me back later and tells me brightly that Barry feels Iris is less likely to fall if he ties her up and that this seems eminently sensible to her. I begin to wonder who is mad.....
Iris' bungalow is, according to Barry, the subject of a legal dispute between him and his sister, who lives in Australia. I don't ever find out if this is true but Barry suddenly moves Iris to his own house in the next village. This house is in a state of complete disarray, not least because he has taken most of the floorboards up in most of the rooms but again, Joanne says she feels Iris is fine, and I have to admit that Barry spends all of his time cooking for her and brushing her hair and generally looking after her, it's just that the whole set up is so bonkers that I cannot believe I am the only one who is worried. The move at least has the advantage that Barry stops visiting me as quickly as he started and gradually I no longer look up from behind my computer with trepidation when I hear the door buzzer go.
Weeks pass and things are relatively quiet and then, without warning, Barry cancels his mother's care. I ring up and question this but yet again it seems that I am the only person who is worried. As it happens, Barry's house is not far from where I live and I do see him pushing Iris in her balloon laden chair from time to time, once or twice I am ashamed to say I dive behind a display in the local Spar when I see him coming but at least I see that Iris still looks alright.
Iris died early this year. I saw the notice in the local paper and was amazed to read the roll call of extended family, I never saw any of them anywhere near her when she was alive but that is all too often the case. I agonise about whether I did the right thing in letting the issue go but the fact is, I did what I could, I am here to provide the care I am contracted to do, no more and no less. I expect I will never find out the circumstances of Iris' death, I console myself with the knowledge that Barry would never knowingly have let her come to any harm and she probably died as a natural consequence of her age and frailty.
Soon afterwards Barry's house was boarded up and remains so to this day. I have no idea what happened to him but I hope he is alright, he was curiously likeable despite his flights of fancy - maybe he has returned to Kenya to rejoin his regiment and sort out the civil war.....
Pushing - We went back on the road on Tuesday. We traveled to Syracuse last night and landed in Boston today. I've been thinking about this trip for awhile and in pr...
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