1

The Spirituality of House Clearance

As you will be aware from my previous posts, my father has recently moved up to Nottingham to be near me so that he can benefit from the extra help provided by a residential care setting. It has been such a joy to have him nearby, and to be able to see him regularly and to take him out to exciting things such as Mahler concerts and steam galas.

During the transition period I found it really hard to write about my feelings and did a mega-copout by posting my series of articles on Simplicity instead of addressing the intense and traumatic experience of helping my father accept the need for the move.

This last month has seen me too-ing and fro-ing to Dorset, together with one of my sisters, to sort out and clear my father’s house. The house is being let unfurnished to provide an income to help with care fees – a decision my father was involved in. He was also involved in all the choices that we made about what he would like to have with him and what to do with the things that the family did not want or need.

Clearing the house has been alternately incredibly stressful and very moving, and was a process not made easier by having a severe ear and chest infection. Family relations have been strained to their limits, with full melt-downs followed by hugs and tears. Other people I have spoken to tell me that this is normal given the circumstances! I saw the New Year in at a local pub with my sister for company and loads of happy and somewhat tipsy people jumping up and down erratically as the TV above the bar blared out Auld Lang Syne.

The first week of sorting, with my sister alongside, was too full-on to draw breath. In five days we attempted to sort out and process all the ‘family’ possessions, furniture and sentimental keepings, alongside 91 years-worth of my father’s gathered clutter. Clutter is actually the wrong word for what my father kept – he is an incredibly detailed and organized man and everything was addressed, labeled, dated and filed in strict order, right down to old school brochures, medical correspondence, and the tear-off Postcards from his Talyllyn railway calendars. Some of his Railway magazines dated back to 1904!

Boxes are now packed and distributed and other things stored, ready for shipping to family members in Britain, France and Australia. People came and went and took things away. Visits were made by local charities and a hospice shop, auctioneers, model engineering friends, carpet fitters, gas safety checkers, and clearance people. My car returned to Nottingham pretending it was a removal van and not a small Mazda 2 with a tiny boot. Dad is now surrounded by familiar things – the walls of his new room sporting train pictures, one of my mother’s tapestries, family photographs, pictures of his house, and a map of Jersey – the island where his father’s family lived. He must be the only resident of a care home who can boast a genuine steam locomotive on the top of his bookcase! (It is proving quite a visitor attraction…)

Ten days later and I was back at the house again, and this time on my own. Despite the ever-changing personnel of decorators, electricians, window fitters, the skip man, estate agents, and the most amiable clearance team I have ever met, I managed to find time to say some ‘goodbyes’ over cups of tea and supper-invites. The strangest thing, though, was that over time the sorting began to feel like a spiritual process.

I really wanted to see things find good and appropriate homes and not simply end up in landfill, and as the days went on more and more options opened up. One friend of dad’s went over-and-above the call of friendship and made multiple runs to and from the house in his estate car – collecting things to sell in a charity sale in aid of dad’s church and taking massive piles of metal, wood and cardboard for recycling. Tools went to a charity for reconditioning and reuse in countries that need them. Another friend appeared and found new homes for my mother’s sewing and tapestry materials and sewing tables. I was introduced to a local project that took away crockery, saucepans, cutlery, the TV and other household items – to be provided to vulnerable people who were setting up home with little or no money. It was as if dad’s home was opening out its arms and giving of the gifts inside.

Do I sound sentimental? Yes, I suppose I am. But also I believe that if you open up your heart and long for something it will be given to you. That openness to spirit and that of God in the world allows these nurturing processes to flow.

In my last day I had some time to spare and managed to still myself from the urge to set off home early. Instead I took some time to contemplate and to walk the paths I loved in the winter sunshine. I took photographs and had a coffee in a local café. I accepted the wonderful hospitality of a bed for the night and a meal with dad’s friends. There was a short, said communion service at the church.

So… Now I feel ready to move on. I feel that this change has been the right thing and that the universe is in harmony with it. I am grateful that dad seemed happy and settled on my return. It is a new chapter for both of us, and I am open to where it will lead.

MAD MOMENT…

Having the decorators and house clearance team in tandem (NOT my decision!) – what a nightmare! Trying to separate the piles the decorators needed (curtains and curtain rails, lightshades, hoover, ladders, paints, tools) and the piles to get taken away. Finding the kettle under dust-sheets!! Miraculously, the only casualty was the centre of a loo-roll holder.

MARVEL MOMENT…

Saying ‘goodbye’ to Shaftesbury after clearing dad’s house – walking quietly in the cold winter sunshine along my favourite routes and lanes and taking photographs. It was almost a meditative process, and very moving.

annedegruchy.co.uk: image - Park Walk in Shaftesbury

© Anne de Gruchy

0

Contracting Worlds

A funny thing has happened recently – my Quakerly studies and thinking about simplicity have collided with my dad’s evolving care needs and his move into residential care, and I find that I am in solidarity with my father’s contracting world!

It is a hard thing to have to move away from your home and all that is familiar into a single bedroom within a communal setting – especially when you are a private man used to your own company and that of your little dog. It is harder still to make the move when you don’t understand or accept the reasons for it because of the effects of Alzheimers.

It has been an emotional time for all the family. My father has been assessed under the Mental Capacity Act and it has been acknowledged that he needs 24 hour care and the safety and support a residential care setting can give. Dad has agreed that the residential setting concerned should be the brilliant nursing home we have found here in Nottingham – near to me, his eldest daughter, and not in Dorset where he lived before. This does not mean that he is in agreement with the decision, but he has now accepted that he is staying and his anxieties have moved on to what will happen to his house and his possessions.

I cannot tell you how weepy and pathetic the whole process has made me. I understand the system well, having worked in mental health and dementia care for many years, but there is nothing that can prepare you for how it feels to have to make life choices on behalf of your own father. Even though our family is in full agreement about the best course of action to support dad and to give him the highest possible quality of life given his needs, it doesn’t stop that wrenching gut when you know that all he wants is to sit by his patio door in his favourite swivel chair and look out over the Blackmore Vale again.

So dad’s world is contracting. His Probus and 41 Club visits have been replaced by ones with a dysfunctional daughter – taking the dog for a walk by the canal or going to a classical concert in a city he remembers fondly from the times when I was a student here. Waxed up ears no longer require trips to the GP with a carer, but can be dealt with ‘on site’ (‘at home’, I should say) by one of the nurses at the care home. If he wanted he could chat to the many articulate and friendly members of ‘the family’, but, as I said, my father is a private man.

Having to reduce your possessions to what will fit in one room is a challenge, and has really made me consider what has value in life. Dad is unable to recall much, but together we are working out a hit-list of things he does not want to do without. He is not a sentimental man, but most of what will remain actually has a high sentimental content – photographs of the family and dad’s dog, soft toys that he has become attached to, railway books and CDs of favourite music even though he no longer plays these, some furniture from his house.

Dad’s situation set me to thinking how I would handle an enforced downsize – assuming my brain still worked more-or-less normally – and I came to the conclusion that it is about making positive choices rather than negative ones. What are the things that I would really value and need? What would sustain and uplift me? It would surely involve considering what I would like to take with me rather than what to leave behind. We are back to the old chestnut of that quote from William Morris: ‘Have nothing in your house that you do not know to be useful, or believe to be beautiful.’

But it is more than that. When our world contracts it comes down to the relationships we have with both other people and ourselves – and, of course, God. My dad’s relationship with his daughters and his local friends has largely determined the level of care and support he has had in recent years. Familiar faces, even though names are long-gone, are welcome and reassuring. Routine, and a sense of self within it, helps to anchor him in a new place.

I have spent a lot of time recently considering what simplicity means to me, and I am perhaps moving away from it being to do with possessions (although what we own, and how much, is of course important and reflects our values in a world of huge inequality) and moving towards making space for that connection with God. Centering prayer and meditative practice provide a deep grounding that immediately feels simple – it is emerging out of this into the world that proves more difficult. For me the knack is to keep that sense of simplicity, of an integral connection to God, in everyday actions and activities.

So here our worlds join up again. A simplicity that connects us to God and drops away the importance of possessions and places. Old age and ill health may result in a contraction of our world, but in doing so it makes us focus on what is really important in our lives and maybe, just maybe, helps us to connect more intensely to God in the process.

MAD MOMENT…

Playing ‘musical furniture’ in dad’s new room – trying to find the most relaxing and practical arrangement – only to end up back at the original layout half an hour, and a lot of puff, later.

MARVEL MOMENT…

The intense joy of singing with others at a recent joint concert with another community choirs.

© Anne de Gruchy

2

Memory Boxes

Following the ‘Cumulative Caring Crises’ that I posted about recently (blog post here) we have now accepted a respite care bed for my dad at the lovely residential home near me. My sister travelled over from France especially to bring dad up to Nottingham following his hospital appointment to check the progress of his bladder cancer. We are not mentioning the ‘L’ (Long-Term) word – just giving him time to settle and benefit from the attention, help and kindness of the staff.

It is hard and sad to see him alternating between being unsure and asking about going home, and being settled and enjoying a meal out with us and a walk by the canal. The home is busy and colourful – something that dad is not used to but that results from their caring, hands-on approach. My sister described it as ‘like Tracy Beaker’s orphanage – all bright colours and busyness’!

I feel too emotional to report in depth, but wanted to share the image below. The home has ‘Memory Boxes’ outside each bedroom where residents can display photos and objects that remind them of people that are important to them, or show a little about their tastes, hobbies and life. It is wonderful to walk along the corridor of bedrooms past model sports cars, or Forest shirts and football paraphernalia, or faded sepia photos of childhood days with mum or dad.

So I got out my felt-tips and produced a ‘Best Dad’ image with a steam train and mounted a photo of dad with his three daughters below. I hope it helps him find his room and remember that we love him, although I think he will respond more to the idea of steam and a good chug-chug sound!

2016-09-26-14-12-30

3

Cumulative Caring Crises and Residential Ripples

The situation with my lovely dad is becoming untenable. ‘Becoming’ is probably rather too tame a word for it – things have changed rapidly over the last nine months and I feel like we are dealing with a runaway steam train (dad would love that analogy) about to hit the buffers. The problem is: how much track do we have left before we hit them?

Christmas was Christmas, but after that it was downhill all the way.

February saw a return of the bladder cancer that has now been treated three times, but this new growth is a different type that would normally require nine sessions of chemotherapy on a weekly basis. Simply taking a biopsy resulted in a rampant infection and an emergency hospital admission, followed by a twelve-day inpatient stay. Continence problems are becoming more frequent. The urology team feel that dad is too frail and susceptible to further infections to be worth risking this treatment. We are sitting on a tumour-timebomb, and when it roots down it could spread quickly.

Dad’s eyesight has also deteriorated badly (he is registered partially-sighted) and he can no longer see to use a bank-card machine properly or to write a legible signature on a cheque. With me being the nearest relative (at 200 miles distant) it is difficult to put financial safeguards in place yet give him any independence. He was also sadly targeted by fraudsters in June, and was persuaded to go to his bank for a very large sum of money. Fortunately the bank were vigilant and rang me as one of the Power of Attorneys, and another emergency trip down south to provide support and to secure dad and the house was necessary.

The third strand of dad’s needs he classifies as ‘confused-dot-com’! If he was capable of making purchases the advertising chaps and chapesses would be really pleased with themselves. Unfortunately their witty slogans simply serve as a humorous way for us to talk about his Alzheimers without using the ‘D’ word. And the confusion has certainly got a lot worse. Just last week we had all three daughters and a friend of dad’s from church and the local vicar all searching for his missing dog only to find that she’d spent the day at her normal dog-grooming appointment. Phone calls and emails were sent from as far afield as Australia and southern France, dog wardens were consulted, and walking routes and the local footpaths searched. It turns out that the carer handed the dog over to the groomers and either didn’t tell dad or he didn’t remember – he simply told us all that she was missing. When she was returned later he couldn’t work out how she had got back.

This brings us to the fourth strand of the problem – the care agency is no longer to able to provide the help that we ask for. Firstly, they simply don’t have enough carers on their books to cover the visits that we have requested, and dad regularly has to get up without help or put together a meal (usually cold, and sometimes out-of-date) if the carer is scheduled too late for his mealtime. Secondly, the communication between the administration side and the carers is somewhat chaotic and so far this has meant that dad missed a flu jab appointment and two chiropody ones. These are the ones we know about. In addition the finance department cannot sort out their invoicing and cashed two payments for the same invoice on one occasion.

Some of these problems are typical of care packages and others may relate to the agency we use, but they are not easy to identify or handle from between 200 and 3,000 miles away. Dad – here I can’t resist some writerly lingo – is an ‘unreliable narrator’, and it is hard to ascertain what is happening and why. It is time, surely, to consider other options.

So we are. We have interviewed a live-in care agency, spoken to other agencies about adding in care visits alongside our existing one, and, finally and in desperation, talked to the wonderful residential home that is local to me. They have previously offered a respite care bed but dad chose not to try it out. But maybe the winds of change are blowing as, for the first time ever, dad recently asked a question about what would happen (to the dog, of course) if he needed residential care. I think, deep down, even dad feels that sense of floundering.

It is so, so, sad. I think I am writing this just to clear the whole, unhappy, situation out of my head. We have tried to gently help dad understand that, what with the ‘lump in his bladder’ (the ‘C’ word is another letter-word that he cannot remember or accept applies to him) and the advancing nature of ‘confused-dot-com’, he maybe needs more care that we can arrange at home.

The tracks are coming to an end, and we would like to bring that train into the station safely if it is at all possible…

MAD MOMENT…

Revisiting the park and play area where we used to go for picnics with the other school families when my son was small. I did, just about, manage to resist joining all the kids in the paddling pool. It made me feel rather old though!

MARVEL MOMENT…

An agent asking to read the full manuscript of my novel having seen an extract. (Shushhhhhhh, I didn’t say that – I feel like I’ll jinx it just by telling people!)

© Anne de Gruchy

2

Juggling Jobs, Caring and Mental Health

The day before I sat down to write this I was offered a new job.

It is an interesting and worthwhile job working with lovely people, but it also heralds a return to my multiple juggling act – dad, and work, and managing my mental health.

It was a big decision to go back to paid employment, and motivated by several things. Firstly, there was the fact that so far I have had no success in publishing my writing (not for money, anyway) and I need to consider my finances and status as self-employed. Secondly, I have got to that stage where I was beginning to miss work – the stage where I am itching for routine, and doing things as part of a team, and contributing something that society sees as worthwhile. Thirdly, my year and a half out of formal employment was mainly to provide extra time and resilience to support my dad. Of course his needs have not gone away – in fact they have increased and only a few weeks ago I had to rush down to Dorset to troubleshoot a crisis – but I have discovered that not being in work has not decreased the stress of dealing with his needs.

Dad and work have always been a juggling act. It would not be such a problem if he lived close-by – then I would be able to get him to a hospital appointment and be back in work the next day instead of losing an extra two days in travel and needing to stay on in case he had an adverse reaction to his treatment. But dad is not close-by and the biggest dilemma comes when there is fire-fighting to do. Like a few weeks ago when I went down to support him after he was targeted by conmen – there was the phone call from his bank to alert me followed by a full seven hours of ringing round and organizing things: a friend to be with him and stop overnight until I could get there, the police to report the crime and check on the house, a locksmith to change the locks, the insurance company, the care agency who look after him, my sisters.

‘What would have happened if I had been at work?’ I asked myself.

In a previous job I had to make choices about whether to take phone calls from dad or the care agency – if they rang I tried to pick up or I returned the call in my lunch break. I ended up with no lunch breaks as well as very little annual leave. I also ended up with high stress levels. Since then I have really examined how I choose to respond to dad’s needs. I have also had lots of extra support from my lovely sisters who both live abroad. Now, one of them is the main point of contact for the care agency and the other is taking over dad’s finances in addition to the other tasks she does. This is no mean feat, especially when you live in Australia – companies are not always keen to send correspondence thousands of miles even if you are named on a Power of Attorney.

So our family muddles on and dad continues to want to live at home. I have talked with my sisters and know that I will simply need to turn my phone off when I am at work if I am to have a chance to succeed in my new job and give it the full attention it deserves. If dad or the care agency cannot get hold of me they will have to find someone else. As someone recently pointed out to me, my father is an adult too – albeit one with a misbehaving brain – and his choice to remain at home has consequences he will need to live with. Maybe at some point the balance will tip and his health or safety will demand that he has residential or live-in care, both options which we have explored on his behalf.

In the end I feel that the decision about returning to work was taken from my hands. I was so intent on worrying about when and whether dad would have the next crisis and if I should just continue trying to manage without a job that I forgot that serendipity – or perhaps God – has a hand in things. It went like this: I got despondent following a book-rejection; I looked in the job listings with no real intent to apply at this stage; the job I have been offered just stuck in my brain and I woke one morning just knowing I needed to apply; the application went in at 2.30am and the rest is history.

Did I do the right thing? This was a question I kept asking myself. But when I was waiting to hear whether I had got an interview I was on tenterhooks and I knew then that I really wanted the post. It just seemed to fit. God, or at least the NHS, obviously thought so too!

MAD MOMENT…

My cat being determined to sit on ME while I conducted an interview and tried to take notes as part of my Simplicity research. My interviewee had lap and attention ready, but cats just know whose is the most inconvenient lap to choose!

MARVEL MOMENT…

I was early for my job interview so I did a twenty-minute meditation sitting in my car in the car park. The car park was surprisingly peaceful and surrounded by greenery. I felt deeply relaxed as I went in for the interview. Will definitely be trying that again if I ever need another job!

© Anne de Gruchy

4

Ripping up the Relationship Rule Book

I have been thinking about relationships.

It started with romance – or rather the lack of it in my life. Do I go back to a dating website or settle for the lovely network of friendships that I have? Is it realistic to expect to find a relationship that actually works after all these years?

Then there are the ups and downs in my family connections. Coping with my father and his needs has not made it easy to keep our family relationships running smoothly, especially given the stressful situations we regularly have to face, but I value my sisters and their partners and children and want to remain close to them.

Recently, in my reading of Quaker Faith & Practice, I reached the section on marriage. This describes the Quaker view of marriage in such tender and spiritual terms (and, typically, also very realistic ones) that I felt like ripping up the relationship ‘rule book’ I have come to know. I found myself moved by the portrayal of what a marriage can be; of the loving companionship that is possible, and the growth – both individually and together – that can happen over a life-long relationship. Yes, the difficulties and complexities that are part of a marriage contract are acknowledged, but the wondrous possibilities of a love that is spirit-filled rises above these.

I have been married. In fact, I have been married twice. I have also been divorced twice. This, for many years, was something that I was actively ashamed of. How could I, a Christian, fail to keep my honestly and sincerely taken marriage vows to love and honour until death parted us? It didn’t matter that I am still in touch, even friends, with both of my ex-husbands – and also with their new partners/wives. It seemed irrelevant that, in one case, the marriage failed when we were still overwhelmed with grief in the wake of losing a baby; or that, in the other, we tried for many years to work at the relationship and went to marriage counselling together. The guilt still sat, heavy and black, on my shoulders.

Later, when I became a Quaker and read the understanding words about divorce and separation that run alongside the uplifting words about marriage, it did not altogether get rid of the sense that I had somehow ‘failed’ to maintain these relationships but there was some comfort there – the recognition of our humanity and the need to be kind to ourselves when we do not live up to society’s, or indeed spiritual, ‘ideals’. There was also the acknowledgement of the possibility of ‘re-birth’ and renewal following divorce.

I am not good at being kind to myself. Every day I rue my inability to remain loving and gentle to wards my father as I cope with his needs and the increasing aggression that accompanies his Alzheimer’s. I find that I get irritated easily, that I start niggling at him, that when he snaps at me sometimes the tension hits the surface like a geezer and we find ourselves shouting at each other. I dislike his sense of entitlement, his assumption that I and others will cover his needs with no reference to what is lost in our own lives in doing so. At the moment of writing this I find myself, yet again, two hundred miles from home in response to a ‘dad crisis’ – a sad, sad situation where conmen tried to swindle a vulnerable old man with dementia out of money for unnecessary roofing work. I willingly dropped everything to respond – finding support for him locally while making arrangements to travel down – yet when I arrived my good intentions were not enough to ground me and, yet again, our relationship is pitching between ease and tension as the strong undercurrent of emotion gets the better of me.

Today, following the latest grumble and snap between us, I found myself kneeling next to my mother’s memorial stone in the graveyard near my father’s house, touching the lettering that bears her name and the date of her death, missing her. I sat down on a bench nearby and meditated, centering myself in prayer, feeling the cool wind on my face and God’s balm in my soul. I opened my eyes twenty minutes later to the views of the fields and the Blackmore Vale beyond and I wondered at the contrast between the naturally easy love I still bear my mum and the tangled, removed, duty-fuelled love that drives me to continue to try to care for my dad and give him the life that he wants while mine feels like it is collapsing around me.

I miss my mum every day. There is no denying that our similar personalities and deep spiritual faith contributed to a love and understanding between us. We both ran on our emotions, unlike my father. When I was depressed she was always available to me, no matter what. She sent me prayers and poems to bolster me, to direct me to God’s love for me. Is this why we were closer – that we had a spiritual sharing as well as a familial one? Yet my dad, too, has a faith; a quiet, stoical faith that is underpinned by his Christian values and his regular church life. And, partly through my newly acquired appreciation of silence and Quakerly stillness, we share a need for inner calm – though my father is a master at maintaining this whatever life throws at him while mine gets toppled by the slightest wave.

Re-seating our relationships in spirit seems to me to be something that has incalculable value, whether that relationship is marriage, or a blood connection, or friendship. Neither of my husbands fully shared my faith, and perhaps my need to root our relationships in God-given values that they did not experience in the same way was one reason we did not manage to translate our marriage-saving efforts into genuine progress. Quaker Faith & Practice explores this element of a marriage and enshrines it at the centre:

‘It is first and foremost a spiritual union, not merely an emotional or physical or legal one…’ Quaker Faith & Practice 16.03

Thinking about relationships this way – with spiritual values at the centre – reminds me of the hope that remains at the heart of my complex relationship with my father, especially as his dementia progresses and his physical health declines. It also reminds me that my efforts to maintain this relationship have value in themselves, despite what I perceive as my failings. In Quaker Faith & Practice I still find a source of comfort and encouragement, and in Jesus’ teaching, too: ‘Let any one of you who is without sin be the first to throw a stone at her’ Jesus said when presented with the case of a woman caught in adultery (Bible, New International Version, John 8:7).

I am going to try to stop throwing stones at myself, and instead appreciate ‘that of God’ which binds me and my dad together.

MAD MOMENT…

Surely the recent crazy, crazy weather has to count? All that rain, then hot sun, then freezing and wet again. Deluged out. The poor plants in the garden don’t know what to think!

annedegruchy.co.uk image: Gritstone rocks at Derwent Edge

MARVEL MOMENT…

Walking up on Derwent Edge – huge stacks of gritstone, dark peaty bog, buttercups and bedstraw, and the good company of fellow travellers.

annedegruchy.co.uk image: View from Derwent Edge 2016-06-18 15.02.10

© Anne de Gruchy

0

Power of Attorney Blues

This is a tale of woe! For want of a Health and Welfare Lasting Power of Attorney (POA) our family find ourselves with a Catch 22 dilemma in getting services for my dad. We are going in circles, believe me, we are going in circles! Please read, and take note, all you carers out there…

My sisters and I have long held an Enduring Power of Attorney, and later a Property and Finance Lasting Power of Attorney which superseded it. Thereby, sadly, lie many other woeful tales of banks, and companies, and even our own beloved (?) Department of Work and Pensions who, at various times, have been disinclined to act on this legally binding document. No, said our solicitor when we set this up (unwisely as it turns out), I don’t think you will also need the Health and Welfare one. Our solicitor must be the only legal person I know who does not take up the opportunity to unashamedly tout for extra work.

Why, you ask me, with your wide experience of working in the field of mental health and social care, did you listen to her? Why risk it?

I suppose the answer is twofold. Firstly, preoccupation with dad’s immediate needs and getting his finances sorted prevented me from thinking it through clearly. Secondly, my own experience is that the teams I worked in were very keen and pro-active in trying to involve family members and carers in a person’s care – of course we obtained the appropriate permissions to do so, and the individual who we were providing services to was the focus of our provision, but, unless there was a conflict of interest, having the family involved really helped us to give a better quality of service.

Does this sound obvious? Clearly not everyone agrees. No less than four different health/social care services or agencies involved in my father’s care have either:
a) refused to provide a service, or
b) queried a request or a care decision,
because a Health and Welfare POA is not in place.

Recently I discussed this with my father’s solicitor. He was frustrated, but not surprised, at the problems we were experiencing. He pointed out that what the services are doing is completely contradictory – on the one hand they will take only dad’s instructions about his care needs which in itself assumes he has capacity, but on the other they want the family to have a Health and Welfare POA before they are willing to involve or consult us when such a POA should technically only be used if dad LACKS capacity. As I said, Catch 22.

So: establish whether he has capacity, I hear you say. If only it were so easy. On at least three occasions over the past two years I have asked the mental health team or social services to arrange a Mental Capacity Assessment in relation to dad understanding his care needs, but they have so far been unwilling to do this. Recently dad had a hospital assessment prior to discharge and the health professional who completed it said she was recommending that social services undertake a Mental Capacity Assessment, but still they did not act.

We may yet be able to set up a Health and Welfare POA if dad agrees and his GP acts as a ‘certificate provider’ confirming that this is appropriate and that he has an understanding of what this means. With dad’s diagnosis of Alzheimers this could go either way – but mental capacity decisions are specific to the time and task in hand, so the fact that dad lacks the capacity to manage his finances for instance, does not mean he lacks capacity in other areas.

In a way I applaud the services’ tenacity in querying our family’s requests on dad’s behalf. They are taking my father as their key priority and not falling into the trap of talking to other people over his head. Sadly, though, they do not take into account fully my father’s memory problems and that he immediately forgets information they have given him and cannot remember the many times he has failed to deal with things and got into a pickle. My father is happy for the services to speak with and be guided by his daughters, and will happily say so if asked. This is brilliant until something goes wrong and we have to deal with the services from a distance. You cannot put dad onto the telephone to tell them he is happy for help to be provided if he is sitting 200 miles away, and if they ring him separately he cannot understand what they are talking about and will tell them that he is managing fine when he isn’t.

The supposedly simple task of putting a handrail by the front door is a case in point. Dad comes out of hospital and is assessed at home by an Occupational Therapist (OT). The OT recommends a hand-rail is fitted by the front door and dad agrees to this. They send round a worker to fit the rail but he cannot decide from the assessment report what is needed. The fitter telephones me to tell me dad ‘did not understand what he needed’ so he did not fit the rail. I ring the OT to request that they clarify what they want the fitter to do and arrange a new visit for the rail to be fitted. They say that the fitter told them dad ‘refused’ to have the rail at all and that they won’t rearrange fitting at my request because I don’t hold Health and Welfare POA. Phew!

I have several other examples but my blood-pressure is rising just writing this. I think a meditation session might be in order.

And the moral of the story? Get those Powers of Attorney sorted out early on, while your relative or friend is still capable of making one and before the need for services makes things more complicated. Good luck, and may you have a fair wind behind your sails!

MAD MOMENT…

Drastic haircut decision – no more than an inch all over! It feels great, and I feel like ‘me’ again.

MARVEL MOMENT…

Attending the Yearly Meeting of the Quakers in Britain for the first time. I only managed two out of the four days, but it was awe-inspiring to be with many hundreds of like-minded people from across the UK and further afield, and to gather together for Meeting for Worship for Business in the Large Meeting House. A pleasure, too, to meet my fellow Eva Koch scholars and to anticipate a summer of stimulating research at Woodbrooke.

© Anne de Gruchy