History Lesson

Many of our customers have some degree of dementia. This can range from some short term memory loss through to profound disability. People are remaining in the community far longer than used to be the case and I believe this is a good thing. Familiar landmarks can be the thing that keeps you in hailing distance when your mind is drifting out from a foggy shore into unreachable waters. Resources to help carers are better than they used to be but the burden on families can still be terrific and of course, resources are only useful if people are willing to accept them..
I have never seen anyone like Flo still living at home. She has a diagnosis of classic Alzheimer's Disease though there is an element of guess work in any diagnosis of dementia. The file says that in 2001 Flo had very limited speech and mobility, seven years on it is amazing she is still here given the progressive nature of the disease. Flo is cared for by Martin, her youngest son and Martin is not the easiest person to help. Martin accepts a sitting service for the five hours a day that he goes in to his office and respite at home for a few days twice a year. He wont consider respite away from home and he will not countenance having a hoist to lift his mum. Flo cannot weight bear so the only way we can do personal care is if Martin lifts his mother bodily and we attend to her. I know, I know - it isn't good for Martin or Flo but I live in the land of compromise ruled over by the jealous Gods of Moving and Handling. We cannot move her without a hoist and her son can, I hate it but that's the way it is.
Occasionally I do the first hour of the sit in call and, frankly, it distresses me beyond measure. Martin rushes off to work and I am left with Flo. She sits in the middle of the living room, resplendent in a special chair that supports her in a semi fetal position. Her physical needs are met, sheepskin bootees to protect her heels, a soft scarf around her neck, holding the bib in place which stops her drooling on her fluffy cardigan. Martin leaves us with the remainder of breakfast, a soft chewy breakfast bar and two lidded plastic beakers of weak blackcurrant juice. The bar has to be broken into tiny pieces and popped in her mouth, it takes an eternity for her to mumble each piece and I am haunted by what I will do if she chokes - she is too heavy to move by myself, panic crawls in the pit of my stomach all the time I feed her. I tip the beaker up to her slack mouth and hold tissues at her lip to catch most of it as it runs back out. Does she want it? Does she wish I would leave her alone? I have no way of knowing. Flo does not speak any more, she makes the occasional groaning sound but it doesn't really sound distressed and the timing of it is random and does not seem to be in response to anything I say to her. She doesn't make eye contact, her eyes seem unfocused but her gaze flicks upwards all the time, scanning the ceiling for something I cannot see or for nothing at all.
The house is truly depressing. The chair dominates the small room, all that it contains apart from that is a formica table with two mismatched chairs, a cabinet with a small television and a high chair, stained and worn, that was obviously Flo's when she could still support her own weight. The walls are painted a cream colour and are none too clean, the whole place looks as if it has not been touched since Flo became unable to look after herself. The most poignant part is a plain crucifix which hangs over the door. This doorway leads to the front room which holds the hospital bed, it's air machine providing a sighing counterpoint to the silence of our company. I look up at the figure on the cross and wonder where Christ is in this sad silence, Flo must have been a believer or this sole ornament would surely not be in the room, if anyone needs Him she does now. I try to speak to Flo but it is incredibly difficult to hold a one sided conversation when you don't know if the other person can hear you, if she wishes you would be quiet or if she is silently screaming while I mouth inanities about the weather. Sometimes I read from the local paper, my voice sounding unatural as I describe fetes and rugby matches and Flo's restless gaze rakes the ceiling. There is more, I am haunted by the image of Martin's life. We help him put Flo to bed at 9pm and - and then what? What does he do in this bleak little room, night after night, week after week. He is a bright man, the newspapers that lie around are broadsheets and the occasional book is always intellectual. A picture of a younger Martin,smiling in cap and gown, stands on the mantlepiece. I admire him for his dedication and decency but I can't help it, I am appalled at how bleak his life must be.
Flo's death was unexpected. She became acutely ill and was gone within three days. The funeral was in a Church of Wales chapel. It wasn't Catholic so the crucifix remains a mystery. The church was typically Welsh, very plain stone with clear window glass and plain pews, no frills at all save for a fabulous carved rood screen. I sat at the back as I always do, I am not there to be noticed, just to pay my respects and slip out quietly. I wondered how this funeral would be, who could grieve a death that was for once surely the embodiment of that cliche "a merciful release" and for everyone, not just for Flo.
The family filed in and the service began. Martin and his older sister talked about their mum. They described the lynch pin of their early lives, always busy but with a wicked sense of humour. A woman who worked seven days a week and who tried to discipline her unruly brood but always ended up laughing. They told funny stories and detailed a proud family roll call of people who had gone before but who had adored Flo. They both stumbled over their speeches, tears barely held in as they gave tribute to a fantastic mother. They named all of the family and one grandson broke down as his name was mentioned, his loud sobs echoing round the church, his raw grief making the back of my throat ache in sympathy. The trouble with this job is you are dealing with a lifetime of family history and you have no idea what has gone before the tiny slice of a person's life that you see. I left the church with a new perspective on the helpless soul Flo had been at the end of her life and some insight into why her son was determined to fight for what he thought was right for her.