Hello to all readers

This blog records the time I am spending with my elderly Dad. This means writing about incidents like a phone call at 4am in the morning asking me to tell him how to phone me – yes, it taxes the brain. It also includes philosophical questions directed at the wearing of clothes – WHY? Why, indeed. There’s lots of swearing at technological devices.

Mostly, these are afternoons – full of incidents, moments and tasks of daily living – but mostly this is time spent in joint efforts at communicating differing world views. There are plenty of wry smiles and exasperated tones and every incident opens up the state of play for our elders – their shrunken worlds and their immense insight which is often disregarded.

Welcome to this world.

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Last things

The day has come when I have to tell you that Dad has died. He passed away just after midday on Thursday January 28th. He had bronchial pneumonia. Late afternoon on Monday when he started to be unwell, he looked at me and asked: Where are the children? Probably thinking I was my mother, he meant his children not mine. He was puzzling over the quietness when it should have been noisy – perhaps this was a throwback to the time of his life when he had young children around. A day later, all four of his children were back with him and we stayed, in turns, to the end.

Later on Monday evening, Dad said to me that he didn’t think he’d last long. He said he was cold. With the help of care staff, we put an additional sweater on him and asked him if he wanted food. He stated, quite clearly, that he wanted some ice cream. But you’re cold, I said. He insisted – and was fetched a big bowl of ice cream which he ate with some gusto. He loved ice cream, unfailingly – we always thought this was because of the limitations of food luxuries at boarding school, as well as during and after the war. Ice cream was a real treat and was his last meal.

During the couple of days that followed, Dad tried to say a few things – we only made out two clear phrases. One was thank you which he said when his mouth was cleaned out by Mark. The other, and I think last, words were I want to get up. Walking was so fundamental to him, routines were so important – of course he wanted to get up but no amount of determination was going to make that possible now. Determination and pure insane-at-times stubbornness got Dad to the very ripe old age of 98. I will never forget when, only a few years ago, we were told that he’d fallen into the Grand Union canal when out with a walking group at the coldest time of the year in mid February – and he was furious to be taken to hospital. How many of us would have survived that?

On Thursday mid-morning, a friend of his from Newport Pagnell rang and said to tell him that the people there who knew him (and there were many) were thinking of him. I went back and told Dad. – the last words I spoke to him. A short time after this, his eldest grandchild, Nicholas, appeared at the door and Dad took his last breath. From children to grandchildren, he handed on everything on to us.

His second eldest grandchild, Daniel, with whom he shared his love of music was due to play the piano at the care home on Friday. Daniel told us that Dad had asked for him to play ‘Nimrod’ from Enigma Variations by Elgar. The British Legion use this piece of music ‘for the dead of the war – to remember the fallen’. Dad was conscious of the many men of his generation who died in wars and even though the Ave Verum by Wiliam Byrd was his preference to listen to, it’s interesting that he had asked Daniel to play the Elgar.

And finally, I want to quote my mother’s last words to me about my father. I have treasured them, knowing how frustrated my mum could be with his single-mindedness. He’s a thoroughly decent man, she said. She was right.

Thank you for reading – and thanks, Dad, for letting me write about, for and as, you. You were a great subject.

Featured Image of Dad in his final Yorkshire days

 

Being a relative

Last week, the care home where Dad resides held its monthly relatives meeting. The first time I attended one of these, it was a joint relatives and residents meeting. I found it instructive listening to the residents’ points of view – albeit those who felt able to verbalise their thoughts. However, this approach has gone and residents and relatives meetings are now separated – I can see both pros and cons to this move.

imageAt the last relatives meeting, there were very few attendees and I was conscious of points being especially directed to me, as a vocal and regular visitor to the home. My main contribution was to bring up the issue of how relatives could be better informed of the care given to residents but I was conscious of a ‘good news’ approach to the meeting. As the fee increase, though not mentioned, came soon after this meeting, this might explain the upbeat tone.

At the meeting last week, I resolved to sink into the background and listen more. However, since many of the items discussed had been brought up at previous meetings, I did point out that we needed to hear about what had been done to try and resolve these issues and to go over minutes of the previous meeting as a matter of course. I could see, again, that the manager was aiming for an informal atmosphere to the meeting but several of the issues brought up needed addressing with a more serious and, if you like, formal response.

In the event, most of the contributions from relatives at the meeting centred on the standard of care in the home and it was helpful for them to be aired. Issues such as staffing levels, accurate administration of medication and appropriate diet were usefully discussed and I was able to take a back seat and hear about things from other relatives’ perspectives.

As a relative of someone in a care home who is also writing about the experience, I’ve imagebeen thinking about the parallels between caring and writing. It occurs to me that both of these can be done either about, for, or as another person. The difference is the distance involved between the person who is caring/ writing and the subject of the caring/writing.  Let’s say you care about someone. That means that you take an active interest in someone else’s welfare – it matters to you. He or she is the subject of your concern or, if we apply this to writing, he or she is the subject of your essay, novel, poem or, indeed, blog.

Caring for someone else brings you closer to him or her. It matters more to the carer to be in tune with the person cared for – to get it right. If you try and write for someone, you have to petition on his or her behalf and focus on the issues and feelings which concern your subject.

Finally, caring or writing as someone else requires the greatest imaginative talent. It means walking in someone else’s shoes and trying to imagine living someone else’s life. I doubt the extent to which this is actually possible but imagination is a powerful tool.

imageDistance is also the issue for a relative of a person in a care home. You have a connection to a ‘loved one’ that entails certain responsibility and implied fellow feeling but the distance you have (which may of course vary) is then changed further by a care home. I would say that being a close relative, such as a spouse, son or daughter of someone in a care home changes the relationship you have with your husband, wife, mother or father into that of an advocate and that it would be useful if care homes embraced that more openly.

The shape and size of advocacy is something I have been trying to get a feel for since Dad entered the care home. Staffing ratios mean that a highly individualised concern and knowledge of someone’s character may be unrealistic to expect. On the other hand, carers need to know how and when to prioritise an individual’s needs as urgent. As a relative, I have on occasion drawn attention to Dad’s situation when I think something important or significant may have been overlooked which could head off a crisis but, unless you have a persistent relative like me who visits frequently, this is unlikely to happen.

This worries me – reacting to a crisis is not a good way to exercise care about, for or as someone. Crises need to be headed off, if possible (and I accept this may not always be), and plans put in place to create different possibilities. When I wrote about activities, it was to suggest that imaginative activities are opportunities for different experiences. Being an advocate, it seems to me that people in a care home need the level of interaction and reassurance which such activities can offer.

Which brings me back to writing. As a form of communication, this blog aims to reach out to both relatives of Dad and relatives of other elderly people and, by covering relevant issues and stories, to show care about, for and as him. Being a relative of someone in a care home is contradictory at times. It feels like desertion. Maybe that’s what this writing is trying to say.

Images

Featured image: Relativity by M.C.Escher. Available at mcescher.com. 1st image: By Cartoon Stock. Available at cartoonstock.com. 2nd image: typewriter by Matt Hanses. Available at bymatthanses.com. 3rd image: Chinese character by Alex Wu, The Epoch Times June 2  2014. Available at: theepochtimes.com – worth looking at for an interesting explanation of the evolution of this Chinese character for relative which originated from the meaning to visit an incarcerated one.

 

Making a life: 21 to 28

When Dad was 23 he ‘found himself’ invalided out of the army – the finer details are a bit sketchy and best left unexplored, especially at the moment when Dad is less than happy with the constraints of a care home environment. He had joined the honourable artillery company (HAC) in 1938 and had been on camps, as pictured above. Next he had passed an exam and been commissioned to enter the Devonshire Regiment but he can’t explain why he ended up for the next 18 months in the Maudsley Hospital in London. For whatever reason… I don’t think… I don’t know really… he says, but clearly asserts – I didn’t run away from the Germans.

The army paid for Dad’s extended convalescence and eventually he adapted well to life in the hospital – he recalls a fellow patient in the hospital who played Brahms love songs on the piano and another patient who was a retired parson. His chosen recollections makes it sound very genteel. I know he kept a daily journal of the tasks he carried out. He has also mentioned a few times that he enjoyed playing tennis with a lady there and felt a sense of freedom in the grounds, unlike his present experience in the care home.

I wasn’t very good at tennis and neither was she – we were much of a muchness. We went on walks in the beautiful garden – lovely grounds – not like here where you can’t go out without signing out.  Compared with here the grounds were….

With the help of the father of his sister-in-law, Eunice, Dad eventually left the hospital and went back to work. There were people I knew – jobs that I knew.

imageSome of the men at the timber firm where Dad returned back to had joined the army so it inevitably meant more responsibility for him. However, what I didn’t realise was that the government ran the timber trade with the assistance of people in the trade because it was a rationed commodity and everything to do with foreign exchange was controlled by the government until it was decontrolled after the war. Dad recalled the timber controller for the Ministry of Supply 1939 to 1947 as a Major Archibald Isidore Harris who was later knighted for his work after the war.

The world of international trade during the war years was by definition a highly political business and I must admit one that I hadn’t thought anything about. During this time, Dad’s family had moved out from their rented Bromley house to a large house in Gerrards Cross in Buckinghamshire. My grandmother had devised a scheme to take in lodgers to pay the rent. There were many potential customers who, like them, were fleeing the London bombs and temporarily needed somewhere to stay.

imageDad, however remained at a boarding house in the Bromley area. This made it easier to get to work on the frequently disrupted train service. He has described the risk of staying in London and the bombs that fell on Bromley, one only a couple of hundred yards from where he was staying. The house where Dad found lodgings was owned by a Joy Laumann, a significant name to me as she was later chosen to be one of my (several) Godparents. From the photo of my christening in the late 1950’s, I can see her emanating a scent of glamour and sporting a fur stole round her shoulders. She must have been a stylish landlady.

As the war entered its final years, Dad sometimes travelled into London from Gerrards Cross and it was during these particularly treacherous rail journeys that he encountered my mother who also travelled that route into the city to work at the Bank of England. The courtship was a relatively short one and 6 months after the end of the war, in March 1946, when Dad was 28 years old, he married my mother, Sybil Mary Bateman, at St Joseph’s Church in Gerrards Cross.image

It was probably a typical early post-war wedding – both my parents in second-hand or borrowed ill-fitting wedding clothes, no doubt with a sense of weary survival and tentative hope for the peacetime years of married life ahead of them. Their initial plans for a house fell through because of alterations that couldn’t be done, so their first married home was 242, Queensway, West Wickham in Kent.

Just over 9 months after the wedding, during the famously freezing winter of 1946, their first child, Michael John, was born and family life commenced.

The links of brotherhood

Dad told me a while back that at one time he wanted to be a Trappist monk – I can only assume that this was before he married and had children – since Trappist monks, as you would expect, observe strict celibacy. They follow a code originating from St Benedict which keeps spoken communication to a minimum, in the belief that this will minimise social distractions and create more receptivity to God’s will.

imageTrappists, properly known as Cistercians of the Strict Observance, like other orders of monks and nuns, renounce their wordly possessions and, according to the 48th chapter of the rule of St Benedict, ‘live by the work of the hands’. They have been characterised as particularly holy, even in comparison to other orders, because of the emphasis on solitude. Interestingly, though, they are famous for making beer and do not renounce alcoholic consumption.

I’m not sure, even given the beer, whether Dad would in fact have been a candidate for such an austere life – possibly – but it is clear that religion has influenced all of his life and guided his decisions. He has practised Catholicism by attending weekly mass, following its teachings, ensuring that his children were instructed in these teachings, and also by being a member of an organisation called the Catenians.

imageThe name ‘Catenians’ comes from the Latin for chain. The organisation promotes links and brotherhood between Catholic men with the aim of supporting family life and the wider Catholic community, including various charities. It was formed in 1908 in Manchester by the then Bishop of Salford, at a time when Catholics were experiencing discrimination and needed to support each other to keep their values active. Now, it is a global organisation that meets in local circles both in the UK and Ireland as well as in countries as far away as Hong Kong, Australia and Malta.

Over the past few years, I have come to appreciate how supportive the Catenian framework has been and still is for Dad. The circle he was a member of for the previous 40 odd years has kept track of his progress, both after my mother died in 2009 and also since he moved to reside in a care home last year. Their support is palpable. And, as well as just keeping in touch, his closest Catenian friends have visited him on two occasions – one being his birthday, as reported here, and the second visit being at the beginning of last week.

imageThe special reason for this visit was to make a presentation to Dad to mark the fact that he has been a member of the Catenians for 60 years. I guess that means that he joined the organisation in 1956 when my parents would have been living in Burgess Hill in West Sussex – the place, also, where I was born. I’m not sure how he came to join but I think it was via a friend at the time.

imageSo, on 4th January, four Catenian friends made the journey up the M1 to mark this 60th anniversary. Fortunately, I was able to use one of the small lounges for the occasion and  to provide some refreshments to welcome Mal, Tony, Margaret and Gordon. This kind of continuity with a former life and friends is hard to achieve, when an elderly person moves to live near a close relative so I am very grateful to these people for making this connection still possible, despite around 300 mile round trip.

As for the continued importance of religion in Dad’s life, my brother Michael has been very committed in taking Dad to the nearest Catholic mass, every Sunday. Again, this is not an easy process. Catholic churches in this area are thin of the ground and the nearest mass is actually held in a  Cof E parish church in a small town, about 4 miles from the care home. Like many small Pennine towns, the surrounding pavements are rough and kerbs awkward, so parking nearby and getting Dad into the church takes some determination from all parties concerned.

imageHowever, the congregation have been very welcoming to Dad (for example by inviting him to the party discussed in this previous post) and this level of friendliness gives a real sense of community which would otherwise be lacking from Dad’s current experience. It was significant that last week he mentioned his Sunday routine to his Catenian visitors and that he praised both the church and the small group of talented musicians who lead the hymns and the sung parts of the mass.

Recently Dad has started many of his phone calls to me with the complaint: I’m all alone here. Though not strictly true, it does emphasise that a sense of community in a care home is hard to achieve and in some cases, near impossible. Although Dad expresses this sense of abandonment, I would say that he is fortunate to have friends that still care enough about him to visit from a distance. It seems that 60 years ago he made a wise decision when he joined the Catenians.

Images: Featured image Small Black, New Chain (2010); available from ihearcolours.tumblr.com. Thanks to Tony McManus for the photos of visit and to him, Margaret, Mal and Gordon for making the long journey to visit us.

 

 

The language of dependency

Although we tend to discuss the condition of dementia in relation to ageing, We seem to talk less about another ‘d’ word, dependency. Dependency is and always has been Dad’s worst nightmare. Either because of upbringing or natural tendency, he has instinctively fought for independence; materially, socially, psychologically and physically. My mother struggled with this trait, though she would admit that she had benefited from the material aspect, as did his children. His friends marvelled at his determination and, especially in later life, his resilient attitude. In short, I would say that Dad has always preferred to act rather than wait – and to do rather than be.

imageAdmirable though this is in some ways, there are downfalls with what we might call an over-independent approach to life. It can breed a conservative and risk-averse frame of mind and also nurture an insular or socially unaware proclivity. For Dad, I would say that his independent persona has also made him more physically active and less talkative than many people – or vice-versa. Critically, it has also meant that the dependence that comes with great old age is doubly hard to adapt to.

Ironically, in the care sector there is much talk of independence, as if it could ward off the clear state of dependency that besets residents in imagecare homes. Sometimes talk of independence is actually a cover for poor care – at its worst, a type of neglect. It seems to me that you can only exercise independence if you have the right conditions to do so and these are not easy to achieve in a care home.

In Dad’s case, those conditions are now very hard to effect. He finds it almost impossible to accept that his mobility is so limited and this means that he falls over frequently. I recall that when I used to visit him in his last flat, if I asked him where to find something, his default response was to get onto his feet and find it himself. ‘No’, I often yelled, ‘just tell me’ but that was much harder and counter-intuitive to him. So probably not much has changed.

However, with limited mobility pressing upon him, Dad is now forced to try harder to use words to explain what is wrong, what he wants and what he means. He can’t jump to his feet and go out when and where he pleases to fetch the things he needs. Explaining things is a challenge, though, and a few months ago I wrote down one of Dad’s attempts to explain what he was looking for: John Lewis – long thing – all singing, all dancing (answer: TV Remote control). Similar effort went into describing underpants as trousers, shorts.

imageI realise that this is beginning to sound like a parlour game – something like 20 questions – but in reality it creates a huge amount of frustration on both sides. Mostly, as the scope of his world shrinks further, I can anticipate what Dad might mean – I’ve heard it before and repetition is a reliable guide. However for the large group of ever-changing carers, this type of individualised interpretation is quite a lot to expect.

And not only might the carers struggle to comprehend Dad’s meaning – my brothers at the end of phone lines also find it hard to decipher. This has become even more challenging recently, as Dad’s voice has almost disappeared to a whispered squeak on occasion. I joked last week that this might be because he’s been shouting too much but unfortunately there’s a grim truth to this. Greater dependency also requires that you know how to summon help. There are buzzers in the rooms but their use also presupposes some foresight and ability.

So, greater dependency demands greater skill from carers, in order to interpret requests but also to support the agency of the cared for. Agency imageis a word we like to use in debates about democracy and participation – it means having influence on what happens to us and affecting our environments. It is broader than the concept of independence and linked to the world around us. Dad desires agency but sees only that he is losing control. There’s a lot of people trying to help him but that’s not the same – if help means dependence it’s a tricky condition, as far as he is concerned.

Language is especially powerful when mobility is lacking but language is not just words. There are other ways in which people can communicate and be understood. Working with young children, I learnt that ‘reading’ and interpreting behaviours was vital. It comes back to the importance of active listening. I can’t help wondering if this is part of the training and education offered for carers of the elderly. We can’t give Dad back his independence but perhaps by acknowledging his agency, we can help him to accept the inevitability of greater dependence.

Images   Featured image: Dependency networks, optimice.com.au; 1st embedded image: More than luxury or style, a car means independence by Jennifer Bonanno, blog.morethanwheels.info; 2nd embedded image: Goya’s physician and the art of caring, image posted by JM Levine, jmlevinemd.com; 3rd embedded image: Words by Mason Ashley, masonashley.com; 4th embedded image: The fallacy of the democratisation of influence by Danny Brown, linkedin.com.

Music again

The New Years Eve afternoon party at Dad’s care home started out as a quiet affair. I helped to offer round the sherry, white wine or lemonade and there  was the usual generic Christmas music – a bit like wallpaper – playing in the background. Meanwhile, the residents sat mutely with no real expectation of anything. We need to sing said one lady in a rather frustrated tone. Singing gets people.…. and she waved her arms to illustrate her point. Continue reading

Work and travel: 14 to 21

Although Dad’s communication skills are starting to wane, with some prompting, he is still able to speak fairly cogently about his early life. Thus it is time for the third stage of Dad’s life history from the ages of 14 to 21 – and to hear some more of his own words.

image

In 1931, just as Dad was nearing the end of his school days, he and his family moved from Muswell Hill to live with Auntie Lily in Holligrave Road, Bromley. His brother, who was training to be a priest, and his sister were at home and two or three school friends also lived in Bromley – one opposite. Dad always speaks fondly of Bromley, though I think that the move there was because Aunt Lily ‘took them in’, to mitigate the mounting family debts.

As mentioned previously, Dad left school on his 15th birthday and straight away went to work in the City of London which he reached by a 20 minute train journey (marvellous!). The job was with a small timber firm and Dad mixed with other men whom, he noted were older than me and more experienced and you learnt from that.

In a small company you do different jobs all the time – operating the phone, making statements out of money owing; invoices and so on. I learnt how to make out statements, do ledgers, add things up, work calculating machines, work out what timber was worth and know customers who were good with money and not so good with money.

The office was on 6th floor in Finsbury Square which meant a trip from Bromley North to London Bridge or Cannon Street – or Bromley South to Blackfriars (pictured) – and then a walk or bus ride to Finsbury Square. In his words he was bullied a bit but in any job you have to put up with a certain amount of being told what to do.

Dad was content, it seems, with his new life; evidently enjoying the relative freedom and responsibility of working life. However he also started to think about travelling further afield. He had already been to France on a school trip so had some idea about what travel to the continent entailed.image

His interest was further kindled by the boyfriend of a young woman who ‘kept’ for his maternal Grandfather Giffin who lived with his mother’s older sister, Aunt Nora, in Orpington.  The young housekeeper (quite attractive actually) was from Denmark and her boyfriend, who Dad remembered was called Anthony White, had travelled to Germany and told him something about where to go.

So when Dad was about 18, he set off for Germany.

It was very cheap to go to Germany – the exchange rate for the mark was twenty to the pound. I went for two weeks –  the first week was a coach trip then I continued on on my own to the Black Forest.

The holiday must have gone well because when he was a year or two older, Dad returned and went back to stay in the Black Forest with the owner of a local brewery whom he was introduced to. They were country people and one son was a Catholic priest whilst a daughter, by coincidence, lived in Bromley.

imageIn one of the photos Dad took, the Nazi Swastika is visible in the background of the local town which Dad visited. This was, as we now know in hindsight, a chilling sign of things to come – Dad was just 19 or 20 on this second visit.

As I prompted him again to finish the tale of what happened to him between the ages of 14 and 21, personal and world history finally synchronised and fell neatly into place:

I joined the territorial army when I was 21.

Featured image: The entrance to Blackfriars Station c 1930 by George Davison Reid. Available from bbc.co.uk

Marking time

You don’t mark time, time marks you

– so said Dad a while back, when we were talking about clocks and routine – a consistent theme of previous posts.

I realised at the time how profound these words were but maybe I didn’t realise how prophetic. In my opinion, time and marking it has become the biggest current challenge of living in a care home for Dad – or indeed, of living at all. Distinguishing between day and night and interpreting what different types of clocks say seems to be too difficult for him a lot of the time. Continue reading

The centre of care

The cost of care and what is at the heart of high quality care have continued to be on my mind this week. Following up on last week’s post, Dad’s care home fees were, as he had feared, increased by what seems quite a  large margin of 7%. Because of this, I have found out more about the funding issues of care homes and, in particular, Dad’s situation as a self funder. It seems that, because local authorities are struggling to support care home funding, self funders like Dad are taking a higher proportion of the fee increase hit to cover costs. Continue reading