Wednesday, 29 October 2008

Counting the Pennies

They call the houses down there "Millionaire's row" the land was unadopted and each person built their own property according to their means and specifications. It's actually not a place that appeals to me, it's ostentatious, in places it's positively vulgar, and it lacks the patina and charm that age and natural development brings. There are Spanish style "hacienda" houses, their white stucco and curved lines incongruous in the Welsh drizzle, there are mock Georgian mansions with pillars and gravel so deep you could lose a small dog in it, there is even a futuristic creation with a slanting roof and aluminium window frames. We don't go down there much, people who buy or who build there tend to be younger and the help they need tends to be of the "little woman who does" type rather than the commode and catheter type care that is our stock in trade. Our one customer in Millionaire's row is Celia.
Celia and her now departed husband did not have children. They devoted their leisure to breeding St. Bernard dogs and their name was apparantly a byword amongst the dog show crowd. The dogs have been gone for some years but the room is still redolent of dog, the smell echoing a doggy reprise from all of the furnishings which hits you as you open the door. I first met Celia when she was brought home after long stay in hospital following a stroke. Her house is circa 1970 and looks like a fledgling architect was let loose with a sketch pad and an open cheque book. There are Gone with the Wind style curved steps up to a huge metal portico and the double doors open to more steps, wide enough to drive your coach and horses right on in and up to the first floor. The whole living area is built at first floor level, a huge through lounge with French windows at each end and a wrap around balcony that looks down on a terraced garden. It's very kitsch and totally useless to a seventy five year old lady with restricted mobility.
Celia and her husband had some neighbours, Bob and Linda, who lived in the houses that back onto Millionaire's row. Bob used to help Mr. P. with restoration work on his vintage car and he and his wife had become good friends with the couple. They were there to greet Celia when she returned home and Linda told me that Mr. P. had asked them to look after Celia "if anything happened to him" and that they considered her part of their family.
That certainly seemed to be the case. Bob and Linda's teenaged sons were often to be found in the house when we visited and Linda certainly kept in close touch, mostly to say that we had not carried the bin down to the gates or we had used a full pack of toilet rolls or some other spurious complaint. I have no way of knowing how much of Celia's condition dates from her stroke but she is certainly eccentric now and she has some very strange behaviours. Linda is supposed to clean the house but the place is festooned with little bits of toilet paper that Celia has spread around and the whole place is generally grotty. There is never a great deal of food either but we don't do the shopping and there is enough to get by, it's just ...not very appetising.
Celia cannot get down the grand staircase to go anywhere and, while it is true that Linda has taken her to have her hair done once every couple of months since she came home, she has been nowhere else. Celia has two pairs of knickers that we wash out each day, her slippers are so downtrodden that I am sure she is going to fall over them and her few clothes are all stained and worn. We know this lady has a considerable amount of money and we also know that Linda and Bob have full control of it. Celia will not hear a word about the subject. I do not know whether this is because she sees nothing wrong with the situation or because she knows that saying anything could potentially deprive her of the closest thing to a family that she has. She is right, always supposing we could get a court appointment to oversee Celia's finances, the consequence would almost certainly be that her neighbours would have no more to do with her and without them her life would be completely bereft of relationships. She is not being physically or mentally abused and I suppose that, while she is certainly not getting the things that she could well afford and that would make her life better, she is not being starved or deprived of basic necesseties. It's horrible but it is typical of abusive relationships with adults, you can remove a child, you cannot make that judgement with an adult who has the capacity to make their own decisions. You just have to stand there and watch and try to get stains out of her underwear in that grimy kitchen sink.

Monday, 27 October 2008

What a Prince

We have a system for new staff. They are interviewed and police checked and, once we know they have a clear record, they are sent out on shadow shifts. This involves going out with a Team Leader and meeting the customers to learn the routines. If somebody is new to the caring role they may need a full week of shifts, meeting each of the clients they will be visiting at least two or three times. Occasionally somebody is particularly nervous and they need an extra week of shadows before theTeam leader is confident they are safe to do the job alone.
Clare is twenty, a dumpy unprepossessing girl who seems young for her age. She seems keen to try the job out although she has no care experience and I put her with a local team to learn the ropes. Jane, the Team Leader, tries hard with her, she is a sweet girl and turns up on time but she has no instinct for the work. Jane comes back to me after a fortnight and says she doubts Clare will make the grade. She has to be told to do every little thing, nothing happens on her own initiative, left to her own devices she just stands staring into space. When Jane tells her to wash somebody and stands back to let her do the job, Clare dabs ineffectually at the customer's arm until she is told to get on with it, then she scrubs them so hard Jane has to intervene while the customer still has skin left. There is more. Jane is worried about the things Clare has told her about her life. She lives with her boyfriend and her year old baby but it seems an odd relationship. Clare's partner looks after the baby and Clare seems to have no say in anything. If Jane drops her at home and the boyfriend is out, Clare is locked out, she has no keys to the flat. The boyfriend rings her sometimes while she is working and she is immediately a gibbering wreck, agreeing with everything he says and making notes of the errands he wants her to do before she returns home.
There is no proifit in having a supernumerary member of staff. We are paying them to observe, to be additional to the carer who is actually doing the work. However, I overrule Jane and give Clare a further two weeks shadowing. The kid needs the break and instinct tells me that she is in for big trouble if she has to go home and tell the boyfriend she has lost her job. Clare doesn't improve, she seems to have no concept of what the job involves and at the end of four weeks my lovely blunt Jane says "Caroline, if you put that girl out on her own, on your own head be it, I wouldn't trust her to water a plant, much less to give someone vital medication." I still prevaricate, I send Clare out on a different team to get a second opinion. The second opinion bears Jane out, Clare is just never going to make the grade.
I had Clare in this morning and told her that we would not be continuing with her probationary period. She took the news like a whipped dog, barely responding and saying "thank you" as she left my office clutching an incongruous "Hello Kitty" handbag and looking as though she had no idea what was going on. I felt horribly guilty, as if I had done her a huge disservice in giving her a chance in the first place.
I wandered into reception after Clare left and was standing checking my post when the door was slammed open so hard it bounced back from the wall, barely missing my head. A man who resembled a warthog with tattoos hurled himself into the room and halted about six inches from me "Have you just sacked my effin' missus?" he bellowed. I was so taken aback I didn't understand what he had said at first and asked him to repeat himself. He did, even more loudly, "Are you the effing bitch who just sacked my effing missus??" The room shrank, there were other people there but I was only aware of his face, inches from mine, twisted in hideous rage. I said as calmly as I could "I'm not discussing this with you, I don't employ you and I have no intention of speaking to you" It was all over as fast as it had begun. He punched the screen by the reception desk, sending it flying across the room and slammed out into the showroom, kicking displays all the way to the door while he called me a selection of names that would make a docker blush. I leaned out of the reception door in time to see him hurtle out of the car park in his car, girlfriend beside him and, as I found out later from a carer who was just getting out of her car, with the baby in the back seat.
The incident was rehashed once we had all recovered our equilibrium and it was generally concluded that I had handled it with amazing calm. Actually, I was so shocked I dealt with it on autopilot. I listened as the day wore on and, in the way of offices everywhere, it became a wryly funny incident, a piece of office folk lore in the making and all the time I listened all I could see was Clare's white face as that car screeched out of the car park. It was a few frightening moments in my day....I hope that's all it was for Clare. I hope it was, but I am sure it wasn't.

Thursday, 23 October 2008

A tribute to Martine..and to Eileen

Eileen originally came to us as an adult protection case. She had been in hospital for several weeks after sustaining broken ribs, a broken nose and extensive bruising. She claimed she had fallen over a coffee table but it was generally thought that her husband had been responsible for her injuries. There was a long history of alcohol abuse and a generally chaotic backround and there was some suggestion that Eileen should not go home. She had various mental health issues and it was felt that the home situation was just not sustainable. However, Eileen had been successfully sober throughout her stay in hospital and was determined to go home and so, quite rightly, that was what was going to happen.
I remember the first case conference I attended at the hospital. Eileen was a handsome sort of woman with hair dyed an improbable black and piled into a bun and the sort of two piece skirt suit that always reminds me of the 1970's - all hectic flowers and glittery buttons. She was softly spoken and appeared nervous but she was completely able to make her own decisions and she spoke positively of her husband. He had visited her a scant few times but had told the nurses that he wanted her home and, since her injuries were healed and she was taking up a bed, things were put in place.
Initially we did very little, some nights they had been drinking but all was calm and we assisted Eileen into her night things and left. Some mornings they were not up in time for the call because they had stayed up very late the night before but generally the situation was unremarkable. Bill, Eileen's husband, was a gruff man who barely acknowledged the carers and he certainly seemed to be attached to his beer cans but he left us alone and we left him alone. Then three weeks into the care Bill literally dropped dead, no warning, no previous ill health, he just keeled over and was gone, a massive heart attack.
Ah the assumptions - somehow everyone thought that Eileen would be ok once she got over the initial shock and grief, after all, Bill was the author of most of her problems and surely life would be easier without the constant roller coaster of drink and drama. Eileen grieved deeply and painfully - she grieved for a man with whom she had had many good happy years and she grieved for the latter part of their relationship when things had been so truly horrible. She grieved for things said and done and for lost opportunities to put it right - and while she grieved, she drank.
We embarked on an eighteen month downward spiral of despair. Eileen drank all day and all night and she truly wished she was dead. The carers regularly found her in a soiled bed, wine bottle in hand, weeping copiously and hurting so much the pain seemed to permeate the fetid air of her bedroom. Slowly her sons became estranged by this sad parody of their mother who rang them day and night to scream abuse at them and was frequently found by police or neighbours wandering the streets in a soiled nightdress, still clutching the latest bottle of wine. It seemed to be an unstoppable decline and, as so often happens in these cases, the harrassed GP had no time for her, the alcohol services could not help her until she stopped drinking and her family washed their hands of her. This last was with some justification, I personally witnessed some of Eileen's screaming tirades to her sons and their wives, hurling obsceneties and ornaments at them after she had rung them and begged them to come.
One person did not give up though. Martine is an old school social worker and for once I wish I could use her real name because she deserves the accolade. She never gave up on Eileen, she visited every week or more often, she stayed with the pain and listened to the ranting and she fought tooth and claw to get anti drinking medication for Eileen, even after the GP refused it three times on grounds of futility and expense. Martine never gave up and neither did we but we all felt that Eileen would either die or kill herself and that the sad end was inevitable.
I don't know what made her turn the corner. Undoubtedly the medication Martine finally got helped but I think her belief in Eileen helped at least as much. Eileen stopped drinking. At first we were on a knife edge - she was horribly depressed and with sobriety came the realisation of what she had done to her family. Day added to day and week to week and as Eileen became used to not drinking her personality reasserted itself. She became quirky and funny and artistic, putting her mark on her house with throws and paintings and gradually replacing the things she had broken in her drunken rages. Her one great aching agony remained in the fact her family did not want to know her, did not believe in her epiphany because they had seen it all before, with her and with their father and they just could not take the risk of going through it again.
We are six months on. A few weeks ago Eileen rang me because she was having trouble contacting the incontinence nurse for her supply of pads. Her voice was strong and melodious and she joked that the nurse should be renamed the incompetence nurse and I put the phone down marvelling at the fact we had exchanged a simple joke and a laugh, how unthinkable that would have been this time last year. Last week marked the second anniversary of Bill's death and the first one Eileen had been through sober and also marked Eileen's birthday. The carers tell me that she had a visit from her youngest son, the one who lives nearest and the one who was most affected and therefore the most angry and intransigent in his determination to have no more to do with her. I rang Eileen and she told me there had been tears and painful conversation but that they were now talking again and the relationship had been resurrected. Eileen said Martine had been to visit her on her birthday too, "thank God for Martine" she said. Thank God indeed, I know her case load is huge and nobody would have blamed her if she had given up on Eileen, but she didn't.

Tuesday, 21 October 2008

Having a good moan

Grace lives alone in an isolated house that looks as if it was last modified around the end of the last war. She is ninety one and off with the fairies most of the time but she copes with four visits a day from us and a monthly overnight visit from her son who lives in Nottingham.
This morning Andrea went as usual to help Grace wash, dress and have breakfast. Grace may be getting forgetful but she knows what she likes and every morning she puts away bacon eggs and toast washed down with a pint of tea, food is one of the few pleasures left to her and she always tucks into breakfast with gusto. Things were very much as normal as Grace made inroads into her fry up - then Andrea went to get the medication - and discovered that Grace had taken three days worth before Andrea had got there. Now I am not a medic, but I know that three days worth of heart and blood pressure medication is unlikely to be a good thing, especially for a frail ninety one year old.
I rang the doctor and the poisons centre and the general consensus was that Grace should be taken to hospital and was likely to be extremely unwell, Grace, meanwhile was onto her second slice of toast and was about as inclined to agree to go to hospital as she was to part with the last of her bacon. I have every admiration for the ambulance service, in nearly thirty years I have only known them anything less than lovely on one occasion and today they lived up to my estimation. They arrived within the hour, even though the call was not an emergency one and they did their best to charm Grace into a ride to hospital. It looked as if they were going to be successful but, once in the ambulance Grace had a change of heart, conveying this fact by punching the ambulanceman right on the nose when he bent over to reason with her. Stalemate. The crew were reluctant to leave her but had no power to force her to co operate. Grace refused to get back in the ambulance and meanwhile Andrea had another five calls to do.
I rang around and conjured carers out of thin air to cover the calls (or at least that's how the task felt - staffing was as tight as usual) and Andrea and the ambulance crew spent a further half hour in negotiation with Grace before compromising with her agreeing to go so long as Andrea drove her in her own car and the ambulance followed behind and Andrea promised not to leave her or let her be admitted.
I then rang Grace's family and got her daughter in law. "Well this is most inconvenient" she said "Why couldn't you have rung an hour ago, Fred has set out for his monthly visit to his mother now and I wont be able to contact him" I swallowed the pithy reply that my crystal ball was faulty and I hadn't known a. that he was coming or b. that Grace was going to hospital an hour ago and apologised for the difficulty but Mrs. H. remained rather sniffy and was at pains to point out that this was extremely vexing. Hard on the heels of that phone call was one from the G.P.'s practice nurse asking why Grace had been allowed access to her medication. I pointed out that she has never touched her medication blister pack before in the seven years we have been going there and that we were not in the habit of hiding medication as a general practice. Besides, the medication had been delivered for the month before we got there that morning so we hadn't even seen it before Grace did her vanishing magic on the tablets. The practice nurse thought we were being at least naive and very possibly criminally negligent by not hiding the tablets and declared her intention of raising the issue with the Care Standards Officer.
All of this was at ten o clock or so. Andrea rang me back at about three to say she was bringing Grace home. We won't be paid for the additional five hours of Andrea's time although we will of course pay her. I spent a good hour of my day covering Andrea's calls and liaising with various medics about the issue and a further hour completing the necessary section 26 report for Care Standards because any abuse of medication is a notifiable incident. I have no doubt I will spend further time tomorrow explaining myself to the Care Standards Inspector. Grace is mad at us, we have wasted the time of the ambulance crew, Grace's family think we are incompetent and the G.P's surgery thinks we have been less than conscientious in our care. Some days I think I need a change of job...... Still, Grace is ok and that's the main thing - and we have hidden her medication...

Sunday, 19 October 2008

Very very naughty

I have debated whether I dare share this story - I guess it shows us in a light that may not be entirely flattering but I would say in my defense that a black sense of humour is a vital requirement in surviving this job.
All people are equal but some are more equal than others, to paraphrase George Orwell. Ada's son was a Director of Social Services somewhere in England. This may or may not have had a bearing on the fact she got round the clock care granted by social services, I will leave you to decide. At any rate, Ada was in her late seventies and certainly needed a high level of care. She was a painfully thin lady and she had a terminal diagnosis due to a blood disorder. This meant she had to have regular painful blood and platelet transfusions and she was at constant risk of hemorrhaging. The slightest knock caused huge bruising and Ada needed somebody with her all of the time because she was also fairly confused. It seemed her husband had endured a particularly horrible death in hospital and her son had promised her she would die at home and so we were drafted in to do round the clock shifts. The care was necessary but often there were stretches of time when we didn't have a lot to do except keep Ada company, there are only so many times you can clean the fridge or wash the windows but we did our best to keep ourselves occupied and Ada as comfortable and safe as possible.
It was late one afternoon and I was in the office when my mobile phone rang. At first I thought there was nobody on the other end of the line but then I heard a voice whispering "Caroline" in a desperate tone. After a moment or two I realised it was Carol, the carer who was with Ada that afternoon. "Carol?" I said "Whatever is the matter? Speak up!" "I can't" came back the anguished whisper "Her son is downstairs and he might hear me!" She was in a state of flat panic and she poured out her story. She had taken Ada upstairs to the lavatory and was waiting with her as it was not safe to leave Ada even for a moment. Carol is one of those people who does not know the meaning of inactivity and she had become bored because Ada famously took for ever on the loo. She had been a hairdresser in the past and she hit on the bright idea of giving Ada's hair a trim while they were waiting for nature to take it's course. All had been going well and they had been chatting while she snipped away until disaster struck, prompting her frantic phone call to me. "She's dead!" she wailed, in tears now "She just slumped over and died and half of her hair is long and the other half is short - her son is downstairs - what shall I dooooo?" "Are you sure she's dead?" I asked "oh yes, absolutely" she gasped.
I answered reflexively, pictures of having to explain ourselves to God knows who flashing through my mind - "Cut the other half - quick!" I whispered back "And don't shout him until you have!"
We never owned up and at the time I felt sick at the whole situation but I have to admit, in retrospect, it makes me grin to myself whenever I think of it......

Thursday, 16 October 2008

Fitting In

Long years in this business have taught me the art of great British understatement and by those criteria Jack is "not a coper".
The block is warden controlled. It is typical of it's genre, a pale brick one storey complex with block paving and neatly kept shrub beds and a box hedge leading you up the path to the front door. The intercom system lets you into a foyer with framed pictures of parties held in the communal lounge and vases of slightly dusty plastic flowers. Four corridors lead off from the main hallway, each with half a dozen neat identical doors. Most residents have added personal touches, a name plaque here, a wrought iron plant stand there. Jack's flat has no ornament unless you count the black finger marks around the lock and the stale smell that emanates from the broken letter box. He has lived in the flat for a little more than a year, moved there by social services when it became clear that he could not cope where he lived before. It didn't take long for his house proud neighbours to unite in a common cause of trying to get him evicted again.
Jack is in his seventies and his needs are simple - beer, bookies, basic food and He has had a cva (cerebral vascular accident, commonly known as a stroke) and he uses a mobility scooter to get to the bookies and the pub. His flat isn't the worst I have seen by a long way but it is cheerless and grubby. He lacks the basics, changes of sheets, changes of underwear, decent towels, and the stuff he does have is bundled in a cupboard in his bed sitting room. We take his washing to the launderette when we can persuade him to part with the money but it is a constant battle and there is always a backlog of dirty laundry which is piled in his bathroom because he doesn't even have a laundry basket. The warden has banned us from using the communal laundry because of complaints from other residents about his heavily soiled garments.
We go in each morning and help Jack to wash and dress and make him some food. He doesn't see personal hygeine as a priority and getting him to shower is hit and miss. His clothes are raggy and stained with beer and urine and the chances of getting him to buy replacements are slim to say the least. We are supposed to go each evening too but more often than not he is in the pub.
We have several other customers in the complex and they are vociferous with their complaints about how we care for Jack. It's frustrating - we don't get time for cleaning or general maintenance, we get two scant half hours a day and often only do, and get paid for, one. I understand that, in the eyes of his neighbours, we are in there so we should be addressing the issues but that can only be done with Jack's co operation and Jack doesn't see anything wrong with the way he lives. He chooses to spend his income on beer and horses and the idea of paying for help to remedy the squalor in which he lives is just not something he sees as necessary. It's a small village and it is openly acknowledged that Jack has always lived like this, his stroke is incidental to his lifestyle except that it helped to secure him his warden controlled home.
The complex had a tenth anniversary party recently. There was a buffet and entertainment provided in the lounge and all the residents were invited by means of a notice in the foyer. Nobody thought for a moment that Jack would attend and indeed he did not. Uncharacteristically though, he was at home when the carers called in the evening. He was sitting in his room, cans scattered around him and with the lights off except for a dim table lamp which barely pierced the gloom. He was obviously feeling very down and he refused to let us get him undressed, this was going to be yet another night when he slept in his clothes. The carer made him a cup of tea, which she placed to go cold by his side and sat down to talk to him since he was refusing to let her do anything practical. She sat in the semi darkness and tried to make conversation with the old man but he was unforthcoming and after a while she filled in the communication book and said goodnight. As she reached the door he looked up from his beer can and said "Thanks for coming girl, it's good to know somebody cares" Jack doesn't have the tools to fit in, he never did, that's why he drinks and goes out of his way not to fit in. Jack's tragedy is that nobody noticed he wanted to fit in while there was still some hope of changing things and that he has become so adept at pretending he doesn't care.

Wednesday, 15 October 2008

Clive Comes of Age

May was referred to us first. She and her husband had run the farm but her husband died many years ago and she had given up the big house and moved to a bungalow on the edge of the land. These bungalows can be found all over the area, housing retired farmers or their widows who have passed the reins to their offspring and are spending their autumn years happily interfering from the sidelines while not having to get up at dawn to do the milking. May had three sons and two farms to pass on but that was ok because Clive was never going to need a farm.
If Clive had been born now he would have gone to a mainstream school, possibly had learning support one to one and then hopefully he would have gone on to some sort of vocational training, maybe even ending up living independently. As it was, he was born sixty years ago and when his family realised he was "a bit simple" they limited his life. I do not mean to imply that they did this with anything but the best of intentions. May loved her son but she had done absolutely everything for him and the result was a completely helpless man, totally dependent and hidebound by rigid routines from which he would not deviate. She kept him at her side and he learned to knit huge wonky scarves and watched all the soap operas with her while his brothers grew up and took their place in the adult world.
This did not pose a huge problem until May died. Various aunties, female cousins and neighbours were willing to help but it was hard to imagine Clive coping at all. It seemed May had left things arranged so that Clive was financially secure and social services stepped in with morning and evening care with his brothers paying privately for nights. Nobody held out much hope for it working but Clive surprised us all by coping better than anyone could have predicted.
He is still given to routine, meals at exact times, certain television programmes, getting up and going to bed at the same time but in other ways Clive has blossomed. He dresses himself, he does his own dishes, he even tries new foods occassionally - all new skills learned in the months he has been living in the bungalow alone. It isn't all plain sailing, his medication seems to make him very nauseous and very sleepy and there are times when he cries for his mother, it's been a long road. We have a male carer who does nights there and he was telling me today that Clive had told him he would like to stay up and watch the football with him. When the carer had said that was great but what had brought this on Clive said "It's nice to have a bit of time with the lads, there's too many women coming in here!" - yes, Clive is blossoming at last, I'm sure May would be completely horrified .....

Tuesday, 14 October 2008

Driving him Crazy

I live in an area where public transport means two buses a day, if you are lucky - and if you catch it in my village it will take you ninety minutes to reach the market town five miles away because the bus goes round every other village before it gets there. The bus station in town is helpfully situated at the bottom of the hill that leads to the shops so, all in all, it's pretty much useless to anyone who is in any way frail. This means that people carry on driving long after they would probably have stopped in a city.
Cora is famous around here. She is eighty nine years old and she drives a huge old Ford which looks like someone has crawled all over it with a toffee hammer, no panel is it's original shape.She drives the narrow lanes at breakneck speed, flicking ash from her constant cigarettes into a crystal ash tray that she keeps on the floor. She doesn't reverse any more though - if she meets someone at a narrow point in the road she leans out of the window and shouts "I'm eighty nine dear!" until the other driver gets the message and reverses.
We visit their house twice a day to help Cora's brother Bob to get in and out of bed. Bob has chronic obstructive airways disease and uses oxygen. He is fifteen years younger than his sister, the baby of the family and the two of them squabble incessantly though they adore each other. The risk assessment says that Cora doesn't smoke in the house but we know she does, the wallpaper and all the furniture is stained orange and there are often ash trays around when we visit. Trying to tackle the issue just brings on a fit of filial unity and they both act innocent, agreeing that oxygen and cigarettes are a very dangerous combination and of course Cora wouldn't smoke around Bob "with his chest" Bob's chest is a worry though, some mornings he can barely breathe and even Cora hesitates in her constant stream of chatter and casts worried glances as we help him with his nebuliser. Cora talks incessantly, an outpouring of gossip and observations that has us all laughing and makes Bob smile in spite of himself even as he tells her to be quiet and let the girls get on with their job.
It was earlier this year when Cora first asked one of the girls to pick her up a little bit of shopping. The girls were tactful, they didn't ask why she was not going out for the groceries herself and they brought the items she had asked for. A few days later Cora asked if she could have regular shopping and we arranged to go to the supermarket once a week as a private call. To be honest, we were all relieved that she had lost her taste for the open road - she was a total liability, we never knew whether we were more afraid for her or more afraid of meeting her round the next bend. It was sad though, somehow not driving shrank Cora, she took to sitting in her armchair all day, entertaining herself with nagging poor Bob. We went many nights to find him sitting in the kitchen "for a bit of peace" while Cora hastily tried to waft the tell tale cigarette smoke away before the carers noticed. Their former camaraderie all but disappeared and the two of them were constantly gloomy,
Then one morning the carer rang me in stitches. She had arrived at the house to find a smart little hatchback sitting outside. She thought Bob's daughter must be visiting but when she got in the house there was just Bob, upstairs in bed, and Cora, busily putting on her hat. "Do you like my new car?" she said. The carer was astounded "But I thought you had given up driving?" she said. Cora met her eyes in the mirror and winked "Oh no dear" she said "The old car died, but I knew Bob would get fed up and give me the money for a new one eventually if I went on enough!"

Monday, 13 October 2008

Shades of Grey

Our brief is clear - we are there to meet the needs of the client. I should say here that "client" is, along with "customer", my preferred term for those we look after. Like so much else in social care, fashions change, and last year's term is this year's ageism - we can't say "old" we have to say "older" We can't use the term "suffers" as in "she suffers from Chron's Disease" because that is disempowering and the term "victim" as in "stroke victim" is a hanging offense nowadays for the same reason. In my experience it is those in boardrooms that worry about these distinctions, the "clients" themselves just want to be treated with respect and when I ask, as I always do, how they would like to be referred to in our documentation they usually react with at best indifference and at worst incredulity. Doris does not care what term we use, Doris does not care about much. She is stone deaf and far more worried about the fact that we won't leave her alone.
As I said at the beginning, we are here to serve the client and to see that their needs and wishes are met as far as possible. This is often far from simple because most people do not exist in isolation, they have family, and families invariably have their own viewpoint - a viewpoint that does not always meet harmoniously with that of the client.
Doris is ninety seven. I don't know whether she has been particularly lovely in earlier years or particularly domineering but my money is on the latter. She has two daughters, both in their early sixties and both professional people. Julia is an architect and Mary is a nurse. They both live many miles away in England but for the past five years and more they have taken it in turns to stay with their mother in her tiny one bedroomed council flat. Mary comes when her shifts allow and Julia fits in around her sister's hours. Neither has ever been married as far as I know. They both call her "Sunny", short for "Sunny Mummy" which is their pet name for her and they both have very firm ideas about what should happen to their mother, namely she should not die. Ever.
Doris has been in failing health for a long time, nothing specific unless you count chronic arthritis and a bad heart, she is just wearing out. Some months ago she had flu and had to be nursed in bed. The doctor was extremely worried about her heart and told us that she should be moved as little as possible. Each morning we had a stand off with whichever of her offspring was present when they demanded that she be got up to use the commode. This culminated with Julia screaming at me, so close to my face that I was wiping away her spittle. I maintained a calm exterior until she leaned into her mother's face with a similar attitude and started screaming at her "Get up Sunny, get up! This bitch says you have to shit in the bed if you don't get up!" I know I was overstepping the mark but at this point I grasped her arm and physically propelled her from the room, standing with my back to the bedroom door until she calmed down enough to speak reasonably, albeit through hysterical tears. The battles have been endless and exhausting. We wanted a profile bed ( a hospital type bed with a pressure relieving mattress that sits up electronically) to make movement easier for all of us and to protect Doris' fragile skin. They refused because they like to sleep with their mother and they dont want her in a single bed. Doris got a bit stronger and the doctor said she could be got out of bed for brief periods but she seemed to lack the trunk strength to sit up. Julia and Mary insisted we got her up. I said this could not be done safely without a hoist and a reclining chair, it took three weeks and the combined efforts of myself, the Occupational Therapist, the doctor and the District Nurse to persuade them to have the equipment. I wanted the chair by the bed, at least initially, they tried to insist we walk her down the corridor to the living room when she patently could not walk. They wanted us to use a handling belt and physically drag her - I refused on the grounds of my staff's well being and of the risk to Doris with her failing heart and her poor creaking legs. They bought a wheelchair and insisted she was put in the living room. Doris, slumped in a chair and seemingly unaware of her surroundings, now spends most of the day "keeping us company" in the living room. We wanted to change her pad in the living room, bringing a bowl in to wash her and thus only hoisting her once but they insist we take her through and lie her on the bed and then bring her back to her chair, putting her through the trauma of hoisting eight times instead. Each morning we arrive to find whichever of the daughters is there "exercising" Doris' legs, pumping them up and down and ignoring her cries so that she can take her weight when we put her in the chair. They have fallen out with every branch of the medical profession as, in turn, they tried to explain that Doris was highly unlikely to "get better" in the sense of walking independently again and now I am told they have hired a private physiotherapist to work with Sunny Mummy each morning. Sunny Mummy seems weary beyond measure and pretty much unaware of the drama going on over her bowed head.
I understand they love her and although I can't pretend I understand this hysterical refusal to believe that a woman of almost one hundred years has had enough, I accept they are not trying to be cruel. They are not trying to be - but they are and tonight, as I pray the private physiotherapist stands up to them and refuses to put Doris through futile painful exercises, I ask myself - Who's needs are being met here? - I'm pretty sure that we are no longer meeting Doris's.

Sunday, 12 October 2008

Fighting the Odds

It was an autumn romance. Chris and Ann had both been married and raised families. Ann's marriage had ended in divorce when her children were quite young but Chris had nursed his wife through a long degenerative illness, finally losing her, after years of hope deferred and heartache, at the age of sixty.
I don't know their story, except that Chris and Ann met through church and were in their mid sixties when they married. There was a picture of their wedding day on the landing, Ann elegant in a cream suit, Chris standing behind her with a hand on her shoulder. Ann's face looked radiant in the photo, laughing eyes that followed you as you went on up the stairs, wondering how life could be so cruel..
Ann and Chris had five good years and then Ann was diagnosed with Multi Systems Atrophy, a degenerative illness that does what it says on the tin, it destroys you on all levels, attacking organs, muscles and nerves and leading to a protracted and difficult death.
We became involved about three years after Ann's diagnosis. She was no longer mobile and her voice was a tiny whisper that seemed to cost her a huge effort. We visited three times a day but it was the morning visit that became famous. Ann was a feminine woman and she didn't let her disability change that. We used to joke it was a free beautician's training course doing that call. Ann had a shower with expensive gel and then there was a plethora of lotions and potions, some for her legs, others for her hands, face creams and the whole finished off with hair blow dried and liberally sprayed. Ann could hardly speak but that bathroom rang with laughter as she rolled her eyes when we used too much cream or accidentally gave her a quiff with the hairdryer. Disability cannot confine personality and Ann managed to make a genuine relationship with all the girls who cared for her.
Chris coped about as well as a man struck by lightning twice might be expected to. He was angry and frightened and he was far from happy to have his home full of carers and nurses. He denied each stage of Ann's illness, fighting against each piece of equipment as it was needed and bolting from the house to the shop as soon as the carers arrived each morning, returning so simultaneously with their departure that it was obvious he must have been waiting outside until the coast was about to be clear. The evening call usually found him well into a bottle of wine and often ready for an argument. He would complain about the amount of washing we were creating, the carers being five minutes late, anything he could find to vent his frustration. Gradually though the girls learned to cope with him, speaking back to him in a way that made me shudder but which made him laugh. Once or twice he was so unreasonable that he reduced one of the girls to tears and it was only Ann, gentle loving Ann, her eyes full of answering tears, squeezing their hands as they took her out of the room, that kept them there. Chris was always contrite the next day and the team stuck at the call because they understood that Chris was fighting his demons and because they loved Ann and her courage.
Ann had reached a point where transferring her to a wheelchair to get to the stairlift was becoming impossible. It was with a sinking heart that I suggested the solution to Chris. A tracking hoist runs on a rail set into the ceiling, it is smoother for the patient but it is quite a radical change to a house and, predictably, Chris would not countenance it. We were still circling the situation when Ann's health reached a crisis. She just seemed to fold in on herself, the staff could barely wake her and she didn't have the strength to sit up. The doctor was summoned and the carer was there when Ann said to him, in a tone more distinct than we had heard in two years "I've had enough" That was it, even Chris could not insist she was fine and Ann went to bed for the last time.
Our society is strange about death in older people. "He had a good innings" "She lived a full life", the trite phrases we hear used all the time imply somehow that nobody is devestated by the death of older people. We expect stoicism from the elderly bereaved and often it seems that this is how it is. Chris was not stoical. We continued caring for Ann for three days after the doctor's visit. She seemed unconscious but she squeezed the girls hands when they spoke to her and each morning they washed her in bed and put her creams and unguents on, they said they had done it for four years and they weren't changing now. It was highly emotional but the worst part was seeing Chris. He never left her bedside and he cried almost constantly saying "Don't leave me, don't leave me" Chris was not ready to let her go and it was agony to see the big determined man still railing against the lousy hand he had been dealt.
I went to the funeral and it was packed. I watched Ann's children directing people to the correct area, the members of the choir she had sung in, extended family, workmates. They smiled and shook hands but they looked devastated and I had the selfish thought with an accompanying moment of panic, that one day my children would be in this position and, like Ann, I wouldn't be there to put them back together afterwards. Chris followed the coffin and he had changed overnight into an old old man, dry eyed but visibly shaking and supported by the tearful children of his own first marriage, more people who were playing out this scene for the second time.
Chris died six weeks later, it wasn't "a good innings" it was a rip off, and he never got over it.

Saturday, 11 October 2008

No Right Answer

There are certain things we take for granted in this age of technology. Here in Britain at least, surely everyone who has a roof over their head has the basics? Nope.
Bridie lives in the most idyllic spot. Her house nestles in a natural bend in the road, it's old stone walls seem to grow out of the hillside behind it and it's cobbled yard slopes gently down to a stream draped with Willow trees that dance a silent swooping ballet in the wind. Bridie is, as her name suggests, Irish. Her husband died a few years back and she lives alone except for a roiling flea ridden semi feral congregation of cats. She is an amazing figure, wrapped in shawls with a woolly hat that she pulls down over long grey hair and a pair of man's hob nailed boots that she wears without laces. She lives about five miles from the biggest town in our county and well over a century away in terms of lifestyle. She refuses to use electricity and her house does not have a good enough supply to use appliances anyway and, unbelievably, she has no running water. Every morning the girls bring water from the well which is situated a good hundred yards from the house and believe me you have no idea how much controversy this has caused over the months we have been doing the call. Inside the house is dark and stained black from the smoke from her open fire and the fat cheap candles she uses. There are huge dark oil paintings on the walls but I could not tell you what they depict. They are covered with the biggest, thickest, blackest cobwebs I have ever seen, each as thick as my finger and hairy with years of accumulated dust and smoke. She sleeps upstairs but we have yet to make it beyond the downstairs rooms, Bridie is up when we arrive and she will not countenance letting us into the upper storey.
Bridie is deeply suspicious of everybody. Dates and times have slipped from her grasp, if they were ever within it, but she knows that at some point a couple befriended her and made off with a substantial amount of her savings - ah yes, her savings. Bridie gives us a paw full of crumpled notes spirited from who-knows-where each week to do her shopping and we are allowed to cash her pension once a month, money which she secretes within her shawl immediately we return. Bridie trusts nobody. Her neighbour, a Welsh farmer of few words, used to look after her before we were contracted to visit twice a day. He told me it took him months to get inside the house, she would open the door an inch or two, take the food his wife had made and shut the door in his face. It is a credit to the man that he persevered and that he went over her head to get her more help last winter when she was wracked with bronchitis. Even now, she is part of his checking rounds, he peers through the window soon after dawn each morning and makes sure she is already up and getting her fire going.
Earlier this week, Penny (yes, Penny again!) rang me in some distress. It seemed Bridie had thrown her out, screaming Gaelic curses foretelling what would befall her if she ever darkened the door again. "What happened?" I asked. It seemed Pen had found a tiny newborn kitten outside the back door in a cardboard box. It was a filthy morning, the kind where the rain comes down Bridie's valley horizontally, and Pen had asked why the kitten was out there. Bridie had responded that the kitten had been abandoned, she had put it there to see if it's mother would return. Penny protested it would die and Bridie said that yes, it would if it was not reclaimed, but that it's mother knew best and if that was the case "The Lord would take it quicker out there" My lovely daffy teenage Pen had decided this was the height of cruelty and had taken the kitten, box and all, to her car to rescue it.
"Put the kitten back, Pen" I said - cue wailing and crying from the other end of the phone. "You cannot steal her kitten and anyway, she is right, sometimes a cat isolates one kitten, they sense there is something wrong with it" "I didn't steal it" she said hotly - in what sense does removing it to your car not constitute stealing it? I explained again gently that the kitten was not ours, that it was, at least nominally, Bridie's and we had no right to interfere and I was not about to summon the RSPCA and lose any chance of access to Bridie in future. Pen was not pacified "You have to do something, I thought you were lovely, you cant let it die!" her voice rose to a shriek. "Pen, I have the files of six human beings on my desk and I can't fix THEIR problems - I cannot fix this - PUT THE BLOODY CAT BACK!!" Pen agreed through loud sobs and I put the phone down shaking my head and wondering why it seems I have been appointed person responsible for the whole Universe. The thing is - I know I was right, I know a relationship with Bridie is my priority and that she was probably right about the kitten anyway - so why do I still feel guilty?

Thursday, 9 October 2008

Dr Mack

Doctors polarise opinion. I could name every G.P. in our county and, for each one, I could produce an equal number of our customers who believe they are candidates for sainthood or who think they should be strung up by their own stethoscope. (Interestingly, the only exception I have ever come across to this rule was Fred, a.k.a. Harold, Shipman. I worked in his area and he was universally loved - go figure). The fact is, G.P.'s are like anyone else, they have good and bad days, types of work they excel at and types at which they do not. Thank God that Barry had Dr. Mack.
Dr. Mack is close to retirement, a dour Scot with the bedside manner of a rattlesnake and a heart of gold. Some people cannot get past his absence of small talk and his inability to hold hands, metaphorically or otherwise, but I love him to bits.
I knew Barry for several months after he was referred to us for personal care. He was seventy two but looked younger, a tall good looking man with a salt and pepper beard and a laugh that started at his toes and filled the room. His wife, Caro, adored him and he adored her right back. They welcomed the staff from the first day like long lost family. We tell the staff that there are professional boundaries, they should not be hugging and kissing clients and they certainly shouldn't be popping back at the end of their run for cheese on toast and games of cards on Barry's bed covers. Barry and Caro weren't our employees though, and they ripped up my rule book. Everyone was hugged to Caro's ample bosom on arrival and leaving and it got to the point where she suggested I rang the house mid afternoon rather than individual team members because they were usually there anyway. Barry had Lung cancer with bone metastases, particularly cruel given that he had never smoked and had been, in Caro's words, a health freak, running marathons into his sixties and eating an organic vegetarian diet. He was obviously weak and often breathless but he joked about his illness, telling the girls he was a dire warning - being good got you nowhere, they had better heed his fate and party like mad while they had the chance. I confess, I probably visited Caro and Barry more than was strictly necessary myself and more than once I found myself dangerously close to telling Caro my own sadnesses over a mug of coffee at her big kitchen table but I resisted and settled instead for being treated like a favourite daughter and getting one of those hugs on leaving.
Barry stayed relatively well for about three months but then he started to really deteriorate and eventually he got an infection that had him rushed into hospital, his lungs had filled with fluid and it looked touch and go. He survived but it was then decided he needed a last ditch blast of radiotherapy and he remained in hospital. Weeks passed and although the girls kept in touch the waters of my work life moved on and, beyond asking how he was doing, Barry moved down the list of my priorities.
Caro rang me late one afternoon to ask if I would let the girls know Barry was very ill. A quick call to the social work team confirmed this, they had been told he had days , maybe hours, rather than weeks. I was confused - everything I knew and everything the couple had said had led me to believe that Barry wanted to die at home. I was horrified to learn that the necessary equipment and services could not be put in place for at least a week, the hospital had been caught unawares, sometimes the progress of a disease just cannot be predicted. Anybody else I know, including myself, would have been raging but when I rang Caro back she was full of praise for the hospital and, more importantly, Caro was in huge denial. Her stance was, "They don't know Barry, he will hang on until he can get home, he cannot die yet"
I found myself ringing Dr. Mack . I hardly knew why but I knew Barry had been his patient and I just needed to vent my anguish. It tells you all you need to know about the man that he rang me back within half an hour. He was his usual irascible self though, greeting my outburst with a non committal "Is that so?" and ending the call with the information that he would go up to the hospital to see Barry "if he had time later"
I got the call next morning, Somehow the equipment had been found and the Macmillan nurses were primed and Barry would be coming home - could we take the care back at an increased level? If it had been impossible I would still have said yes and we arranged for care to start with the evening call that day. I went myself with the team leader to find two Macmillan nurses and two District nurses and a shiny new hospital bed ensconced where Barry's old bed had stood. Barry Barry. He was painfully thin and a terrible colour but his grin was the same and he teased me that I would be overcome with jealousy when I saw how shapely his legs had become. We carried out the care as if he was made of glass but the familiar laughter echoed around the room as we did it and Caro hovered at the door, joining in with eyes that were too bright but which remained fixed on her beloved Barry. She told us Dr. Mack had arranged everything but I don't think she knew what a miracle the grumpy doctor had perpetrated and I didn't enlighten her. We hugged on the driveway, all pretense of professional reserve gone now and I drove away wondering whether Barry would be there in the morning. He was, but the morphine from the driver had kicked in and he barely stirred when his beloved girls changed him and made him comfortable. He slipped away just before lunchtime, surrounded by family and with Caro holding his hand. It was heartbreaking but he was at home, as he and Caro had wished, and his family rejoiced for that. I don't know if even now they know that final blessing on a lifetime of love was down to the inimitable Dr. Mack.

Wednesday, 8 October 2008

Not my Day

Ruby's discharge had been delayed twice and was finally scheduled for this afternoon. Let me say here I am not having a good week and the window I had in which to carry out a risk assessment for this lady before commencing care tonight was barely wide enough to squeeze my ample hips through, thus when she had not appeared by 3.30 I asked the receptionist to ring hospital and check if she had left. He rang the social work department rather than the ward and proceeded to harangue the Senior Social Worker and then tell her "not to speak to him like an idiot" when she tried to explain he was speaking to the wrong people. Some days it feels like trying to herd cats.... Thankfully said Senior has known me for years and was very generous when I apologised. I will gloss over my subsequent meeting with the staff member, the bright spot is that he is only covering Mat leave and I may still have a business when he leaves.
I arrived at Ruby's at 4.30 pm with raised blood pressure and about thirty minutes to conduct a full environmental and personal risk assessment. The front door was unlocked and I let myself into the hallway, my high heels echoing on a splendid tiled hall floor. Ruby was in the front room, a room that had obviously been used as a storage cum dumping ground for some years. I have no idea why some old people put piles of clothing and towels and general detritus on a sofa and then put a blanket over the resultant mountain range but they do, and this was where I found Ruby perched. Her zimmer frame was in front of her, plonked on top of the hose for a vacuum cleaner that was helpfully wound around its legs. It didn't really matter a hell of a lot since whoever had put it there had obviously lifted it into the room, there was no way it was going to fit through the tiny gap between the side board and the sofa if she wanted to get out of the room. Ruby had a blue hospital carrier bag on the floor beside her and very little idea about anything.
She didn't know the number of the key safe on her front door, her next of kin was not listed with a phone number and she was extremely worried about the whereabouts of her cat and didn't want any sort of conversation until Tiddles had been located. Perfect.
A further examination showed that the house was not actually too bad, there was an adapted bathroom and a big kitchen with a cosy armchair and, best of all, there proved to be a further sitting room that had been converted to a bedroom and had a commode and a raised armchair. I extricated Ruby from the defunct front room by the unusual method of lifting the zimmer out first and going back for the customer and took her through to the bed sitting room while I made her the cup of tea she was gasping for and looked for the cat.
The cat was awol, the bed was unmade and Ruby had no idea where the sheets might be and bizarrely, I could not locate a cutlery drawer so I had to measure sugar into the tea from the canister and stir it with a knife. Searching for the cutlery did locate a pack of sheets and a mattress cover so I set to to make the bed, unsurprised when the sheets had to be wrestled onto the new deep mattress as they did not even approximately fit. Job done, I finally sat down and started to fill out my forms and then the family arrived.....
I accept that I have prejudices, we all have them, and the only way to deal with people fairly is to allow for your preconceptions. Ruby's family broke new ground though. Her son in law was wearing a pair of trousers that looked as though they had enjoyed their heyday in the psychedelic Sixties teamed with an unraveling sweater and a large woolly hat. His eyes looked in opposite directions and he seemed reluctant to speak to me although, on the bright side, he did know the combination for the key lock. Ruby's granddaughter was probably as wide as she was high and had long black tangled hair and a full mustache. She didn't want to speak to me either, she just stood behind her father in the hallway tearing bits off a full cooked chicken and stuffing them in her mouth - you couldn't make it up.
I completed the paperwork in record time, now forty five minutes late for my next appointment, and packed up my things, promising Ruby that a carer would visit at about 9pm to put her to bed. Ruby had taken a shine to me by this time and didn't want me to leave but I extricated myself and shot out of the front door at a run - to fall over the missing cat and land head first in an extremely muddy puddle - obviously herding cats is not my forte....

Tuesday, 7 October 2008

Penny for Your Thoughts

She's picking on Penny and I don't know what to do.
Jenny is in her mid sixties, a bit of a kid by our standards. I did the assessment myself and we got on. She has had a lot of ill health and, though she disguises it well, there is a definite problem with her short term memory. I am a bit perturbed by a long and rambling tale she tells me about a family feud involving several siblings, it seems at odds with the friendly open demeanour she has shown up to this point. She tells me about her daughter, Beth, at length though. Beth has a hairdressing salon in a town about ten miles away and is a loving daughter who has asked for some help for her mum while she is at work. Jenny has been having a lot of falls and she wants us to help her with meals and personal hygiene - simple stuff to make sure she is coping.
Penny is one of our youngest carers. She is only nineteen and she is full of fun, a bit giddy but a thoroughly nice girl with a real knack for the work. She tells the clients to call her Twopence because there is too much of her to be a Penny and she demonstrates her karaoke skills while she strips beds and empties commodes - she is a live wire and they all love her. She lives in an out of the way bit of the area and she does the hard to get to calls near to where she lives. The people she goes to would be hard to cover without Pen, she is an asset.
Things seem ok at first. Pen says Jenny is enjoying the help and seems better. We record what we have done at each visit and Pen makes a note of what Jenny has at each meal. The first indication of trouble comes when she notes that she couldn't find any fresh bread to make the sandwich Jenny had asked for, Beth leaves a note saying that there were fresh rolls in the bread bin and Pen should open her eyes and while she is about it should get someone to teach her to make a proper cup of tea. Pen is upset but I jolly her along, these things happen, not to worry.
It's like a dripping tap though. Beth rings me and says Penny is too young to do the job, she is slapdash, she is careless. I defend the girl, I know she is good at her job, some of the people she cares for are severely impaired and the work is complex and she is universally praised in every other call.
The situation is not helped by the fact Jenny does not always remember things. She will tell Pen she doesn't fancy the salmon Beth has left, Pen makes her egg on toast and then Beth rings and plays hell because she hasn't has the meal that was left for her.Jenny then denies she has said she doesn't want the salmon. Beth questions everything Penny does and Jenny is getting the drift and starting to be cold to the girl too. I would take Penny out but there is nobody else to do those calls without sending Pen and another carer ten miles in opposite directions and depriving two sets of customers of the regular staff that they trust and are used to. The complaints are impossible to prove either way, each one not serious in itself but I wonder if the big one is coming, if soon the complaint will be something that puts us all through the wringer, scars Pen for life, and casts a pall of doubt on the agency as a whole.
I have tried to reason with Beth but she is totally unreasonable on the subject, almost frightening in her vitriol about this young girl that she has only met a handful of times. The package is shared with another agency and I rang their manager last week. It seems she is having similar problems and I learn that we are not the first agency to have been in there, in fact, we are pretty much the last ones covering that area who have not already handed the call back. The social worker is sympathetic but she has always found the daughter to be pleasant and reasonable, she only got the case recently and the worker who preceded her has moved on.
Penny was in tears today, she says she now wonders if this is the job for her. She says she has never been bright and the way she keeps making a mess of things in Jenny's is typical of her - she thought she was good at the job but maybe she should try at Tesco, she has heard they are taking on staff.
If I hand the call back I will feel we have all failed. Who will look after Jenny and who will defend us against Beth's condemnation? On the other hand I keep seeing Penny's face without it's trademark grin as she left the office today. I asked her if she wanted to come out of the call but she knows that will mean losing her other calls and she says she wants to stay - for now.
...She's picking on Penny and I don't know what to do.....

Sunday, 5 October 2008

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.

Friday, 3 October 2008

The Ghost of Christmas Past

Many years ago in a grimy Northern town...
I sat opposite Jan for years - we shrieked with laughter and cried bitter tears and saw each other through the death of parents, the desertion of duff boyfriends and the wrath of Managers for over ten years. Like a bolshy version of the Blues Brothers, we wore black jackets and sunglasses (it was the fashion, honest) - we were social workers with a side order of cynical humour and a determination to do the job right, if not always strictly according to the rules.
It was the dead first week of January, Christmas decorations drooped on the windows and we drooped in sympathy but an emergency referral came in and we hit the road to do our thing. The referral had come in from a neighbour who was worried about Mr. F., the old gentleman next door, she said he had flu and he was not being cared for properly by his daughter, she had not seen him for days and she was concerned. We wondered why the neighbour had not tried the radical step of knocking on the door and asking how the chap was but decided we had better have a look. It could have been anything, abuse, inadequacy or more likely nothing that couldn't be dealt with by medical attention- you learn quickly not to take any referral at face value, relying instead on the evidence of your own eyes.
The evidence did not look promising as we pulled up outside the house. Any social care worker will tell you that you don't always need the house number, sometimes you see the house with the filthy curtains, the broken fence and the peeling paint and you just know that you have reached your destination. We knocked several times before the door was opened by a disheveled young woman whose age could have been anywhere between thirty and forty five. There was something in her bearing that told me she wasn't quite right, not seriously impaired, but as she introduced herself it was clear that Mary had a mild learning disability. She told us that she and her dad had been suffering with flu since Christmas Eve but that she was now feeling a bit better. As Mary let us in I was thinking that the referral was probably simply an over anxious neighbour, this family obviously did not cope well by conventional standards but had undoubtedly ticked along like this for years.
My opinion changed rapidly as we walked into the lounge behind the young woman. The armchair held a tall gaunt man in his seventies who looked close to death. His breathing was rapid and shallow with an underlying bubbling that sounded ominous to me. "He's looking much better" said Mary brightly. This is where colleagues who know each other inside out are invaluable. A brief meeting of eyes and Jan swooped Mary off into the kitchen while I leaned over the gentleman and tried to wake him. His eyes flickered open briefly but they didn't really register that I was there and his skin was hot and papery under my touch. I gently pinched the skin on the back of his hand and it remained in the telltale ridge that says someone is seriously dehydrated. I don't call ambulances lightly, potentially every non urgent call could prevent a crew from attending a real emergency, but this time I could see blue lights were going to be justified.
I called Jan and Mary back. Jan had been extracting some details from Mary about her dad and already had the salient points noted down to go with him. I explained that Mr. F. needed to go to hospital and we got details of an aunt we could inform so that Mary would not be left to cope alone. We phoned for an ambulance and tried to reassure a very tearful Mary that her dad would be alright and that we weren't suggesting she hadn't looked after him properly. The atmosphere was tense with emotion, the semi conscious man and the daughter veering dangerously close to hysteria with the two of us trying to explain what he would need to take to hospital with him when suddenly Mary brightened. She rushed into the kitchen and came back with an enormous cooked turkey. The meat was obviously rancid, the partly carved breast meat was slimy and had a covering of fluffy mold. "See?" said Mary "I have been feeding him, we cooked this on Christmas Eve and we haven't felt well enough to eat it until the last few days!" "Err, that's good Mary" I said "But I think maybe that the turkey is...past it's best".....I said before that colleagues who know each other well are invaluable - they are, but not always. I caught Jan's eye over the malodorous corpse of Christmas dinner and suddenly felt a bubble of hysterical laughter rising in my chest. I had to look away rapidly as Jan disappeared into the kitchen with her shoulders shaking suspiciously and it was good luck that the ambulance crew arrived at that moment so that I could turn my back and get a grip on myself while they dealt with the situation.
Mr. F. was taken off to hospital where he made a full recovery, Mary's aunt arrived and turned out to be bustling and lovingly competent as she swooped Mary away. And the turkey? Sadly the turkey was beyond help, we took it away and gave it a decent burial, we made it sit in the boot on the way back to the office though.....

Thursday, 2 October 2008

The Mysterious Clarissa

The referral landed on my desk on a rare slow morning and I read it, at first with mild interest, and then with increasing curiosity. Clarissa had the double barreled surname to match her aristocratic forename and had been a Barrister . She was in her fifties and the referral was for daily visits to prepare food and to help with daily tasks in her caravan...her caravan? What was a youngish Barrister doing in a caravan? I read on but there were no further clues beyond the information that she had arthritis, so I set out to do the risk assessment.
The address turned out to be a field Clarissa owned adjoining some land belonging to friends of hers, from a distance it looked idyllic with a little pond and ornamental trees and shrubs surrounding the caravan. As I approached however I could see that the van was pretty dilapidated, streaked green and generally shabby. I knocked and heard a distant shout so I opened the door - and was bowled over by a tide of small dogs and, believe it or not, two lambs. From my rather undignified position on my bottom on the floor I could see at least two more dogs, three cats and a large jolly looking woman who was regarding me with some concern and a definite tinge of amusement. "Oh dear" she said, in a distinctly upper crust accent "I was expecting somebody else so I didn't put the menagerie away. Are you alright?" I regarded my ripped tights and my scattered papers as best I could through the face washing attentions of a what looked like a small mop with legs and tried to assess whether anything more serious than my dignity was hurt, it seemed I was indeed alright so I struggled up and waded through the livestock to shake hands with Clarissa and introduce myself.
The whole place was scruffy and smelled of damp and animals but such was Clarissa's charm and warmth that I soon found myself chatting away as if sharing a sofa with a lamb was something I did most days. Clarissa kept up a stream of highly amusing and charming conversation while I filled in my forms and got no closer to satisfying my curiosity. She offered no history beyond saying that she had not been well and had made some bad business decisions but things were being resolved and she intended to have a house built on the site "when things got sorted out".
I was distracted from my form filling by a huge oil painting which incongruously almost filled one wall of the van. It was undoubtedly of a much younger Clarissa, captured in evening dress with one arm draped over the chair on which she reclined. She was not an especially good looking woman and was carrying a fair amount of weight. The painting showed that she had been handsome rather than pretty as a younger woman but the figure in the picture exuded a smoldering languid sex appeal that had me mesmerized. She saw my sideways glances and said "That was my coming out painting - I was wearing a corset that was crippling me!" I commented that she was quite a girl and she winked at me and said "You have no idea how right you are".
Time passed and the girls went in each day to Clarissa. She often had friends visiting and some days she would seem positively joyous. Other days would find her alone and melancholy though she never complained and she had every member of staff squabbling over who would go and see her, livestock and shoddy surroundings were more than outweighed by half an hour of Clarissa on form. We worried about her though, she was on lots of medication and her arthritis wasn't good even in summer. The caravan was bitterly cold in the winter and Clarissa fretted about her books which were getting damp - we fretted more about her swollen joints and her mood which was constantly low. Rumours abounded about how Clarissa had ended up in such a sorry state - she had taken to drink or drugs or both ( if so there was no evidence of it now), she had gambled, a married man had seduced her and swindled her, she had been in a mental hospital. She was always charming and forthcoming on all subjects except an explanation for her situation.
As time passed Clarissa told us stories of how the plans for her house were coming on and she would soon be out of the hated van but nothing ever happened and two more winters passed with the van and Clarissa both looking more and more desperate. Earlier this summer her social worker, who incidentally is probably one of the best I know, rang me and we had a discussion about what could be done. It was increasingly obvious that Clarissa could not do another winter. The only option seemed to be a council flat but the idea just wouldn't fly. Clarissa in a council flat, without her precious animals - it didn't seem melodramatic to say it would kill her. We came to no better conclusion but before any suggestion could be made Clarissa threw a curve ball.
She had talked to her friends and had decided that she would sell them part of her land and in return they would make one of their stables into a home for her until her ship came in and she could build on the remaining part of the field. Work started immediately on the stables and today that's what happened - a motley crew of carers carried stacks of books, furnishings and a large oil painting into a converted stable, finally assisting Clarissa herself to make her flamboyant progress across the field, scarf trailing behind her and with a retinue of tail wagging attendants dancing around her at every step. I seriously doubt they have planning permission, for a Barrister Clarissa seems incredibly naive, but the inside of the stable is cosy and smells of the wood they have used to partition rooms. A wood stove has been installed and the rooms are warm with an aristocratically shabby sofa and rugs brought out of storage making the place look homely. I don't know whether Clarissa will ever resolve whatever mystery has tied up her finances but when I left her this evening, leaning back in her chair with her stove blazing and a canine carpet reclining on the rug before it I couldn't help smiling. Clarissa isn't worried so maybe I shouldn't be either. One thing is for sure - you get to see all sorts in this line of work....

Wednesday, 1 October 2008

Living Within Your Means

She has lived in the house since she moved in with her parents at the age of fifteen. The house was brand new then, a garden semi in a nice area, each pair of houses different to it's neighbours, each with a garden in front and a long sloping lawn down to the river behind.
Myfanwy is in her eighties now and lives alone in the house. She has never married and her parents are long gone, she still refers to them constantly, with reverence and not infrequently with tears in her eyes. Within the house time has stood still, possibly since they moved in, and certainly since her dad died thirty years ago.
Money is not an issue, we know this because we do Myfanwy's banking. She has over three hundred thousand pounds in the bank but she lives as if she is a pauper. I have tried gently to discuss this when she refuses herself the smallest of comforts but the idea of "frittering it away" horrifies her. The money is going to be left to the British Heart Foundation, because daddy died of a heart attack. This is non negotiable, Myfanwy will not listen to arguments or pleading, the lady has decided and the lady is not for turning
There is no central heating and the floors are mostly linoleum with enough rugs overlapping to give a health and safety assessment officer a heart attack. Each morning we let ourselves in, eventually, because the lock on the door is faulty. Some mornings it is colder inside the house than outside, you can see your breath in the tiled kitchen as you go in. We go upstairs and plug in the kettle in the hall - you have to boil a kettle for hot water, she wont have the boiler on. We go into the bedroom with it's uncarpeted floor and wake Myfanwy. She still sleeps in the bed she was born in. It has an original feather mattress which has to be shaken out each morning, it weighs a ton. Myfanwy is incontinent and the bed is usually wet, her breathing is awful and I am sure the feathers and the damp don't help but Myfanwy wont hear of changing it. We go into the bathroom and wash her as best we can with rapidly cooling water and cheap green soap. She wont have a shower put in because that would mean changing things and there is no chance of getting her into the high sided cast iron bath. She worked in the same office all of her working life and she believed in buying "good" skirts. I'm sure they were good thirty years ago but she is very much thinner now and the skirts are shapeless and faded to a fetching shade of mud. Getting Myfanwy dressed is comical, she wears a vest, a liberty bodice, an over vest and then a girdle that has only faded pretensions to being elasticated. There is a ready, steady, go! moment when you let go of the girdle and pull up her skirt quickly to stop it falling off again. Her big toes are sore and she wears little knitted covers on them inside her darned stockings, the little pink crocheted covers are somehow poignant on the end of her poor gnarled feet.
It's downstairs then and breakfast. She lives in the kitchen and she settles herself in her chair at the table while we prepare tea with long life milk from the pantry, she wont have a fridge. She has bran fibres with hot water so as not to waste milk and one slice of toast with margarine and it's God help you if you spread it too thickly. It is a meal without charm, merely a matter of fuel.
When I do the call she calls me "cart 'orse" because I keep tripping on the piled up rugs and laughs at me for suggesting that I might pop back with fish and chips one day as a treat. As I walk away, leaving the little figure hunched in the cold kitchen with a shawl around her shoulders I always wonder - what does she DO all day in that freezing house with no company and no television?
Jane, the Team Leader, told her for days that her leg looked sore but she refused to have a doctor, the best we could do was to persuade her to have it creamed each morning and even then Jane bought the cream from her own money. After about four days of this, on a Sunday morning, it was obvious that there was an infection in the leg and Jane insisted that she was calling the emergency doctor. She changed the bed and made Myfanwy get back in it but when she came back two hours later to check she found her on the floor where she had fallen trying to get up and go downstairs. Jane says she is still haunted by the distress on Myfanwy's face as the Ambulance crew took her out of the house, as far as we knew, the first time she had been outside for at least five years.
It turned out that she had broken her hip. She didn't respond well to physiotherapy after the operation and the decision was made that she would have to go into residential care. It is hard to describe the frustration of her carers, we all felt a degree of guilt that we had never persuaded Myfanwy to care for herself better, to get the doctor earlier, to heat the blasted house, and now the consequence was that she was losing her precious home and was going into care, the thing she dreaded most in the world.
The house is sold now. There was a raft of builders skips outside for weeks and now a new young family have moved in. The metal Venetian blinds are gone and pretty curtains hang at the windows and most mornings I see a young mum herding her children into a car on the newly tarmacked drive. I never pass without remembering Myfanwy and that freezing bathroom and that corset that fitted where it touched. I never have got the nerve up to visit her but I know she is still alive - I hope the British Heart Foundation appreciate whatever is left of that money.