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…


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!


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


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!


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!


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


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.


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


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


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!


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


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


Home Truths

Or: A Tale of Two Care Scenarios

    Scenario A

Dutiful daughter embraces caring for her elderly father and overcomes the problems of distance and her own fragile mental health. Problems are faced, but there are also fun times involving trips to the seaside and a fascination with ducks and furry toys. The family, scattered across the globe, pull together – but the weather is still better in Australia than the UK!

    Scenario B

Dysfunctional daughter jeopardizes the care available to her father with her erratic mental health and tendency to confront the system when there is no chance of changing it. The under-staffed and somewhat disorganized care agency struggles to provide the care paid for and to cope with distressed daughterly demands. Family relationships disintegrate as dysfunctional sibling goes into meltdown.


Life is never straightforward. My life is probably less straightforward than most and I’m the first to hold my hand up to it. It’s harder to hear it from others.

Recently, a family member let rip and told it like it was. This involved them losing it during a phone call when we were discussing the care package for my dad. The family member shouted that it was all my fault, and that my father’s care agency came closer to sacking us than we did to sacking them. This is true. And, in as much as our fragilities affect our reactions and also other people, it is my fault. It was hard to hear it but it was fair, even though the method of delivery probably wasn’t.

The difficulty is in finding a balance in the way we view the truth. Looking at my life and the way I’ve tried to care for dad you could say that both Scenario A and Scenario B are accurate, but of course neither gives the full picture of the actual situation. It’s that age-old political trick of what we leave out rather than what we put in.

Writing out these scenarios was intriguing. It was like writing out the summary of a plotline for a book. And, unlike when I try to summarize my novels for a query letter, it was easy. Perhaps this is because I was deliberately descending into clichéd pictures taken from one particular angle. It’s simple to present just the rose-tinted view of caring, or the doom-and-gloom version, but much harder to get the subtle balance of reality.

So what is the reality? For me it is a very strange mix of love and duty. Of facing the unfaceable and yet finding joy and ease in dirty and difficult tasks. Of course what I find ‘unfaceable’ is very different than what most people do. A simple phone call floors me, and dealing with the system and bureaucracy causes my stress levels to soar. I don’t handle things well – as my family member pointed out so forcefully.

But there are things that I handle better. Understanding dad’s headspace and need for routine is a doddle, and we settle into a very comfortable companionship when I don’t have a long ‘to do’ list of tasks sitting on my shoulders. I’m good at day-to-day caring tasks – cleaning dad’s shoes and glasses, ensuring a good supply and change of continence pants, clean clothes, cooking nice meals, maintaining a stock of hearing aid batteries. I’m good at connecting with people, at building links with dad’s neighbours and friends. I just wish I lived close by so that the balance of tasks fell towards the ones I’m comfortable with rather than the ones that I’m not.

Writing the above list has been good for me. It’s reminded me that I am not only about dysfunctionality. Like the characters in my novels (hopefully) I am more rounded – contradictory for sure, but with positive traits as well as negative. Yin and Yang. Grunge rock and classical side-by-side. It’s why I struggle to get plotlines that I can write out simply – life is complex, and people are, too. But that is what is fascinating, and what, ultimately, makes us human.


My cat having a daft week! Big emergency vet bill because he was bitten by some unknown assailant, then the presents of a headless mouse and a live goldfinch in the space of two days. He never was a hunter, but it looks like he’s getting into his stride…


Psychadelic blues at my local pub. Proper throw-back music and brilliant, too.

© Anne de Gruchy


Being a Daughter, Too

I’m having a break from caring for dad.

My lovely sisters have taken seriously the struggles I have had in coping with things, and are supplying back-up as well as keeping the airlines in business almost single-handed!

Currently dad is sunning himself (hopefully) in southern France where sister number one lives. To achieve this entailed my brother-in-law flying over to the UK to collect him, then packing everything he needed, depositing the dog at the kennels, and accompanying dad back to France. The same will be necessary in reverse to bring him home. Nothing is simple when you are dealing with someone with Alzheimer’s, partial sight and bladder cancer.

Dad loves a holiday. After he and mum retired they went into overdrive and booked about three holidays a year. Eventually they got addicted to the convenience of cruises and spent many happy weeks travelling the oceans to visit interesting places and watch the Northern Lights. After mum died, dad found it hard to accept that his ability to have regular holidays was affected. We have managed to give him various breaks over the ensuing years, but much travel is needed to get to Dorset where he lives before a holiday can even begin. He is not capable of going alone.

So dad is in France and I do not have to worry about phone calls that uncover unexpected needs and crises, or whether dad is managing with the newly increased care package and the interruption of his morning routine.

I also don’t have to worry about financial stuff. Sister number two is busy sending out Powers of Attorney and asking the financial institutions dad has dealings with to communicate via her. This has not been easy as she lives in Australia and she needs to provide evidence of her identity to every organization she contacts. The level of proof they require has varied, and she has had to make visits to solicitors and notaries to have her identity sworn to. One company has insisted on all three of us signing to say sister number two can take over – something that is completely unnecessary as we are allowed to act independently under the Power of Attorney we hold. So now their form is winging its way from Australia to France to the UK and back to Australia again, just so that they have three signatures in one place. The airlines are in heaven.

Dad’s finances have been a big headache for us. He has been unable to manage his paperwork for a long time, and correspondence goes unanswered or missing. Because of the distance between us it has been hard to keep on top of what needs doing, and what has got into a muddle. Recently dad has decided he needs to do a big clear out of his paperwork. This is something he has steadfastly refused to do for years, but all of a sudden it has become an obsession. I wonder whether it is a bit like end-of-life spring-cleaning – the urge to tidy up your affairs at a certain point as you get older. Certainly the pile of paperwork next to dad’s shredder is impressive. The problem is that he is no longer able to see or think well enough to know what should be kept and what should go. A few months ago he dismantled the file containing his passport, will, and EHIC health card, and it took us many days to locate the key items and hide them away somewhere safe.

After dad comes back from France, sister number two will take over the ‘Rescue-Anne’ operation and make a month’s visit to the UK. She will take dad to his next cancer check and sort out more of his finances and his Tax Return. She will try to identify once and for all who the ‘mystery stockbroker’ is. Dad swears he has a stockbroker, but cannot remember names and we cannot locate a file. Never having had to deal with stocks or shares, this is all a mystery to me – but not as much of a mystery as the stockbroker’s identity!

I hope to catch up with sister number two while she is here – Australia is a long way to travel otherwise. And even though it is tempting to have her visit me and share some wonderful Peak District walks, I may well go down to see her at dad’s. The thing is that I miss him if I don’t see him for a long time. It is like the song from My Fair Lady – I’ve become accustomed to his face.

It is good to remember sometimes that it is not just about being a carer, but being a daughter, too.


Attempting to use the interesting 6” screws the Timber Merchant sold me to join together the sleepers to create my new raised beds. A friend came to help, but the drill wasn’t up to the job. Eventually I gave up on my attempts to find someone with a big enough drill and bought some brackets instead. Does anyone need some unused super-sized wood screws?

2016-04-23 14.04.59 2016-04-23 14.04.01


After all my troubles trying to see out of my new glasses and worrying what the optician would say when I took them back (again!), it turns out that there was a fault with the coating and the manufacturer have replaced the lenses free-of-charge. I can see at last! Phew!!!

© Anne de Gruchy


Pariah Carer

Sometimes I feel like I’ve become a Pariah Carer.

I am the person who fights unwinnable battles and batters her head against walls that will never come down. I get stressed, but cling onto the wreckage for so long that I am holding onto a single piece of driftwood by the time I either sink or accept rescue. After five years of this I should have learned better, but I haven’t.

This is a topic I’ve been meaning to write about for a long while but it’s hard to own up to the ‘Pariah’ label. There are echoes of the subject in my previous post How NOT to Get a Carer’s Assessment. Recently I have had to hand over most of my dealings with dad’s care agency to my sisters in France and Australia – partly because I am not coping and partly because my extreme distress when dealing with things is jeopardizing our relationship with the agency. It’s not that the agency is perfect and I’m not – we have had serious issues of care to contend with that have put my dad at risk at times – it is just that I get so upset and frustrated when I try to sort things out that my involvement can be counterproductive.

This is not something that is unique to my relationship with dad and his caregivers. I struggle with many things in day-to-day life. Boiler breakdowns or even a dripping tap can upend me. But it is dealing with the system – bureaucracy and phone lines and the complexity that seems to be built into simple tasks nowadays – that totally floors me. It is bad enough trying to deal with this in my own life, but taking on dad’s affairs too has been a step too far.

My Pariahship doesn’t just sit with the system though – I get frustrated at dad himself. At his lack of insight (which is part of his dementia), at his stubborn intransigence (which is part of his personality), and at his inability to accept help gracefully (which is partly his bid to remain independent). I say to myself: ‘Give willingly and lovingly or not at all’, but that is easier said than done. Sometimes I find myself sat at the breakfast table arguing with dad and I end up shouting. Sometimes he shouts at me, or bares his teeth, but often he just looks like a lost little boy and I end up crying and apologizing, and we have a big hug, and I say what a rotten up-and-down daughter you have, and he strokes my head like I was five again.

There! The paragraph above was really hard to write, but I’ve said it. It’s like a confession – a guilty secret – to say that you don’t cope with caring for someone who you love. Yet I know that other carers will identify with this, at least to some extent.

Friends and family advise me to pick my battles, and they are right. That you have to weigh up whether the outcome is worth the cost. Others understand my urge to engage with a system that often will not help my father or me. Mainly, like me, these people have worked in the field of health and social care and are concerned about issues of safeguarding and capacity. But in the final analysis it is the carers that dad is relating to day-to-day, and they are lovely people who genuinely want to help.

In the end it is about people, pure and simple – I just wish I could be the person dad deserves. Deserving or not, though, I am his daughter and he will always be my dad.


Can too many theatre and music gigs in one week lead to cultural overload? I’m trying for a record this week!


Taking some peace with a walk by the Oxford Canal in the middle of my journey home from my recent visit with dad.

© Anne de Gruchy


Living on the Margins

Today, yet again, I woke up in a bed away from home. To be precise, I woke up at my father’s house. This has become familiar after many years of visiting for long periods to support him with his increasing health needs. But today was different. Today I was alone in the house. No dad, no dog, just me.

Dad is in hospital. Several days ago he had an emergency admission with what emerged as a bad urine infection. This, in itself, was a result of follow-up checks after several recurrences of bladder cancer. Sadly the checks showed that his cancer has returned, so I am here for the long haul.

I am used to living on the margins. Part of me has always liked sitting alone in motorway service stations with a cup of tea or resting my head and watching the world go by as I travel away from my hometown by train. The day after dad’s admission I finally escaped to the hospital restaurant for an hour and bought myself a cooked breakfast. I sat there, updating family and friends by text and watching the health workers from the weekend overnight shift come and go, taking a well-earned break. I felt comfortable, as if this was somewhere I belonged. Somewhere rootless and between lives.

Generally I am a person of routine. I value being at my own house and knowing what my day or week will bring. I miss my cat and my familiar things around me when I am away. When called upon, though, I can embrace the itinerant lifestyle. I actually feel very happy setting up a new ‘base camp’ in my dad’s spare room. On this occasion, because it is unclear how many weeks (or months) I may need to stay, I have brought everything except the proverbial kitchen sink. I have a filing system of dad’s stuff worthy of the British Library and have got my writing things and books to occupy me should I get any free time between hospital visits and my caring role.

The difficulty comes when switching between the two – my settled ‘home’ mode and my trouble-shooter role. Because of my long history of depression I keep a mood chart which helps me determine cause and effect – what might trigger my depression or make my migraines worse. My chart shows a clear link between being away from home and a big dip in mood on my return. It happens every time, however well I prepare for it. It is the reason I try to keep sensible gaps between visits – so that I have time to settle back into a routine and rebuild my mental health.

Now, after many years of spending time with dad, my routine at his house is almost as well established as my routine at home. I know his habits and his foibles, I know what he will tolerate and the requests or changes that upset him or make him aggressive, I know how to keep the wheels well oiled.

But today, waking up in dad’s house alone with the prospect of daily hour-and-a-half round trips to the hospital until he is discharged, everything is different. The house would feel less empty if I brought the dog back from kennels but I don’t want to leave her alone for long periods. I am in limbo, surrounded by decisions I feel ill-equipped to make, with no support from the social care services. The care agency that has looked after dad for five years has cancelled the care contract because of the length of dad’s hospital admission, and his needs once he comes out are unclear. All I can do is make my ‘bed away from home’ as comfortable as possible and prepare mentally for a roller-coaster ride.


Driving home from the hospital late at night along unfamiliar Wiltshire country roads. It felt surreal, partly because I was so tired and partly because I have become used to living in a city again and the deep darkness is so unfamiliar now.


Doing the Telegraph concise crossword with my dad in hospital and him being better than me at getting the clues! (He’s 91 and has a diagnosis of Alzheimer’s.)

© Anne de Gruchy


Loneliness, Dementia and Living the Life We Want

I’ve been thinking about my lovely dad, about him sitting there at home with his little dog, and worrying that he might be lonely. Perhaps it’s because I’ve been experiencing a low period myself – in fact, a period of quite severe depression – but I know he loves company, and that without his Westie he’d be quite lost.

It’s hard not to project our own feelings and concerns onto the lives of others. When you’re caring for someone, and trying to support them, it’s hard to leave behind your own thoughts and to really listen to what they’re wishing for themselves. For my dad, that’s clearly to live independently at home for as long as he is able. ‘I don’t want to move’ is a mantra for him if you talk to him about future options – about exploring the possibilities that would be available should he no longer be able to live safely at home.

Now days, dad simply moves through each day trusting that what has always happened will continue to happen. That, on the day of his Probus Club, someone will turn up to give him a lift. That, when his 41 Club have a posh Christmas dinner, someone will sort out the payment and the menu choices and a means for him to get there. He no longer does these things for himself, but he does not remember this. We make wonderful diary secretaries, me and my sisters!

There are many things that dad no longer does. He will open letters but he no longer replies to them. He forgets they’ve arrived, and when I visit I may or may not find them and have to troubleshoot the consequences of his lack of response. Thus he misses medical appointments or bills go unpaid. Much of his mail now comes to me, or my sisters have to deal with things by email (they both live abroad). He no longer remembers if he’s fed the dog, though fortunately she makes her needs known if she’s hungry. He no longer changes his clothes for fresh ones or eats vegetables or puts the bin out or makes me a cup of tea when he does one for himself.

We worry about dad. We know that he gets disorientated and that sometimes he leaves the door open when he goes out, but we also know that he is happy living where he is with his familiar things around him. He is totally reliant on the care package we have set up – on the carers who come and go, who take him shopping, and do his washing, who help prepare and heat his meals. Over time some of them have become his secondary social life – the people he relies on because they are familiar faces and part of his routine. They alleviate the loneliness he feels.

In many ways dad is on borrowed time living at home. His poor eyesight increases the chance of accidents and falls, and his dementia puts him at risk of fraud and means he can no longer perform everyday tasks or remember people’s names. He is like a child – happy unless you try to change his routine or tell him what he should do. But, as those with experience of dementia know, caring is also about allowing and managing a certain level of risk in order to maximize a loved one’s freedom and independence. If dad takes the dog for a walk he risks not being fully aware of the traffic or finding his way home easily, but he has his faithful companion and it helps his mobility and circulation, too.

I know dad sometimes gets lonely, because he’s told me. But he’s living the life he wants to lead and I have to step back from my own feelings and let him get on with it. If it were me, I’d no doubt feel the same – and I’d no doubt be just as single-minded in trying to maintain the lifestyle I loved.


Going on a full day of yoga and meditation, when it is probably 20 years since I last tried to bend my legs into the Lotus position!


Winter gardens!

annedegruchy.co.uk image: winter garden flowers

© Anne de Gruchy


How NOT to get a Carer’s Assessment

For many years now I have been caught up in a cycle of stress and meltdowns trying to juggle life and work and my dad’s needs. This has been aggravated by the fact that my dad lives 200 miles away, and you will be familiar by now with my rants about the woes of long-distance caring. I spent several fruitless years trying to get support from the social care services where my dad lives. When I was close to a breakdown I asked his social worker for input and help with crisis planning, only to be told that I should pull out and ‘let your dad fail’ – only then would they be able to give some input. I wrote to ask for a Carer’s Assessment and was refused.

Over the following two years I took this battle on personally, creating a certain level of worry for my family and friends along the way. I asked for support from my GP with little success. I changed GP, again registering as a carer, and asked for help in appealing the refusal of the Carer’s Assessment, only to be told I should ‘park’ my expectations. But I’m a stubborn person when I believe in something, and I was feeling desperate and alone. I saw a different GP in the practice and now have some good support.

Then, at this very difficult time, a special man flitted in and then out of my life. I did not know whether the ‘out’ was permanent, and began to think about the reasons things fell apart – and the way that I tend to spend so much energy thinking about how other people are feeling that I don’t fully engage with, or acknowledge, my own needs. My special man would immediately recognize what I’m trying to put down in words – he had an uncanny ability to really ‘see’ me. It was something that brought us close, but that could also be a problem. Sometimes he wanted to get through that veneer – past the concerned/stressed/taking-on-other-people’s-problems me, to the ‘real’ (and more relaxed) person underneath.

This thinking spree proved to be timely. My helpful GP had written to social services in dad’s area asking them to reconsider giving me a Carer’s Assessment, and a few weeks later a big questionnaire plopped through my letterbox. I had hoped that the assessment might entail meeting with, or speaking to, an actual human being, so I telephoned the Carers’ Caseworker who had been assigned to me but was told that I needed to complete the paperwork before any face-to-face options could be considered – so I hunkered down with a supply of biros and a big mug of tea.

The Carer’s Assessment, like most things to do with carers, was not designed for those living long-distance. The questions were all about how your daily role of caring might prevent you doing certain things, and asked what a ‘typical’ day would look like. I have no typical day. If I’m at home it’s one thing – leading my own life but with time spent on phone calls, paperwork, finances, organization and crisis management for dad – and if I’m at dad’s it’s 24/7 supporting dad with no ability to lead my own life or to go to work at all.

But a magical thing happened as I began to fill in the details – I started to realize that this was all about me and not dad. I began to see that the ‘taking-on-other-people’s-problems’ me actually needed to start doing a bit less rather than a bit more, and that dad, too, stood to gain if I could find the more relaxed me underneath.

Dad is clear about what he wants. He wants to stay at home, independently, for as long as possible. We – his family – want to support him to do this. However it comes at a cost, and increasingly there are risks and issues of safety to consider as his Alzheimer’s progresses and his eyesight deteriorates further. But what I see more clearly now is that one of the biggest barriers for dad is me being realistic about what I can do. I know I need to give care lovingly if I am to do it at all – and moving from paid employment to self-employment has facilitated this – but I am still the person who takes other people’s problems too much to heart.

I have decided to try to regain a bit more of ‘me’ – to actually visit dad less often, but give him more quality time and attention; to work with my sisters to simplify his affairs; to make space again for spiritual things and not setting an alarm at the weekend. I hope to meet my Carer’s Caseworker face-to-face, but I am going to try to be my own support, too – to take responsibility for managing myself as well as dad.


Flapping around trying to prevent dad from setting himself alight at the candlelit Midnight Mass on Christmas Eve. I was only partially successful – he has a nice brown singe mark on his jacket sleeve. He was by no means the only one flirting with fire in the aisle that night!


The response of my wonderful ‘old’ friend to my recent depression – texting me every day and making me feel cared for and supported at a very dark time.

© Anne de Gruchy