Forever Caring – the circles of life

Several years after my elderly father died I received a call on my mobile from an unknown number as I sat in my car.  Assuming it was from someone trying to sell me something I almost didn’t answer; when I did, the voice in my ear sent me swooping back in time and although it was a warm day I broke out in a cold sweat.

It was Martha, a wonderful Zimbabwean woman who lived with and cared for my dad during the last three years of his life when he was bedridden, unable to speak and fed by a tube in his stomach.   Hearing her again reawakened the stresses, fears and sadness that had enveloped me every time this kind, gentle woman called me up.

Despite several attempts in the years since dad died I had never managed to contact Martha, so this was the first time I’d heard her voice since his death.  Its lilting, accented cadences, combined with the way she called me “Pippy” (no one else ever does) pitched me into my past, hurling me back into the most difficult time of my life.

It sounds dramatic when put like that.  But I have considered my words carefully.  My elderly parents took many years to die.  Mum, who had dementia, lived in a nursing home close to dad’s flat.   For me, it was an agonising, drawn-out decade as I experienced constant worry, grief, frustration and a never-ending sense of loss.

Now, when I talk to people who are in the throes of looking after loved ones I am all too aware of what they are going through.  And sad as I am that my parents have died, I breathe a sigh of relief that, for my family – for the moment at least – those times are over.

I didn’t even consider myself a carer; it was dad’s social services manager who told me I was.   I didn’t perform the numerous, daily intimate tasks for dad that Martha did.  I didn’t sleep in the room next to his, listening out for his bell.   I didn’t top up his feeding tube or replace his catheter.

But I spent hours talking to doctors, nurses, lawyers, carers and care agencies, care home managers and staff, NHS and social care employees of all ranks, bank managers and equipment providers, sorting out issues, arranging appointments, cajoling and complaining, buying and explaining, applying for and ultimately securing (after lengthy appeals procedures) NHS funds for both my parents.

And of course I visited them as often as I could.  The emotional turmoil was unrelenting, and often vented on my long-suffering husband.  Such is the lot of the seven million family carers in the UK, even one operating at arm’s length, like me.

The distance of time lends perspective.  Looking back, I see that slowly but surely you begin living two lives: your normal, everyday pre-carer’s life centred on your own family, your own work, your ups and downs; and your carer’s life, focussed, by definition, on those for whom you are caring, on their needs and worries, their (in my parents’ case) virtually constant lows and very occasional highs.

The two orbits in which the carer exists are inexorably linked.  I wasn’t good at Maths at school but I remember Venn diagrams with their overlapping circles, and they remind me of how it was for me in mum and dad’s closing years.

Now that I write so much about elderly people, their care and dementia, I frequently encounter (either on social media or in the flesh) individuals who look after loved ones not at a distance, as I did, but in their own homes.  Their selfless devotion floors me; it humbles me as little else can.  The circles of their particular Venn diagrams are not so much overlapping as overlaid until the carer’s life is all but hidden under the life of his or her charge.

Researching a piece about Admiral Nurses (specialist dementia nurses who support the families of those with the condition) I received, late one evening, an email replying to some questions I’d posed a man in his 60s who lives with and cares full-time for his elderly mum who has Alzheimer’s.

In answer to how he saw the future the man said he’d recently told his Admiral Nurse: “When all this is over I am thinking of changing my identity – new name, new place to live , even thinking of buying a wig. Disengage with the old me and reassemble someone new. Crazy, I know, particularly at my age.

“All in all, the future does not exist, so why think about it at all. If you had asked me ten years ago what the future might be I would never imagined what has happened. Que sera, sera”.

His email was heart-breaking; his words stirred up in me the swirling emotions with which I had lived for so long, albeit not as intensely as him.  And again, I felt a sense of relief that all this was behind me.  It is sobering to think that three in five of us in the UK will be carers at some point in our lives.

In truth, it had never been anywhere near as bad for me as for my selfless interviewee.  Unlike him, I could walk away and regain, if only for a day or two, my old life.  Though even for me this wasn’t always possible. When and where the two circles of a carer’s Venn diagram overlap isn’t in his or her gift.

One weekend, as mum and dad’s health continued to worsen, my husband and I packed our young daughter off on an extended play date and went to visit old friends in Derbyshire.  It was to be two days of relaxation away from it all.  We were met with a glass of Champagne.  After the first few sips I felt my shoulders drop, I chatted, laughed, began to feel my old self.

And then my mobile went off.  It was Marius, a Polish lad who had been dad’s first unofficial carer and now usually called only when things were going wrong.  As soon as I heard his voice I was swept back to my father’s flat in Surrey, to illness, doctors and distress.   In fact, Marius wanted to plan a short trip for dad in his car – it was a delightful offer, the sort of human kindness that makes you want to weep.

Which was what I did from that moment on.  The entire weekend.  I couldn’t stop crying.  I kept trying to pull myself together, forget about mum and dad with their haunted eyes and their old, broken bodies which had once cradled mine.  But I couldn’t.   At about 9.30pm I slipped away from the dinner party thrown especially for me and my husband and took myself to bed.  When I later sought counselling (something I recommend) I discovered that I had been suffering from anticipatory grief.

On the train home from Derbyshire, I resented the fact that my carer’s world had exploded into my own world – and immediately felt guilty for doing so.  Guilt, in those days was my perpetual, unwanted companion.

All life is a juggling act.  We never know how many difficult issues other people have to contend with.  Caring for someone you love, watching them suffer, is fraught and complex – and none of us choose it.  What I now know is that the experience never leaves you.  Hopefully it made me a better person: it certainly changed me forever.

 

10 Responses to Forever Caring – the circles of life

  1. Susan Macaulay 15th July 2017 at 1:59 pm #

    Lovely post. Thanks.

    • Pippa Kelly 17th July 2017 at 4:18 pm #

      Thank you Susan.

  2. Lynda Henderson 17th July 2017 at 4:46 am #

    Thank you Pippa. I’ve been baring my soul on FB publicly, and have upset/angered some
    .
    My partner lives with dementia and with me: her Dx is rare,and she’s losing language. Truly cruel for a songwriter vocalist.

    Your description of overlapping lives is beautifully visual. V’s illness progressed so fast for a while that it did eclipse mine, right to ending my own physical rehab program of 20 years 3 years ago, when we were waiting on V’s entitlements to professional support.

    Now that we have a team around us, life is mostly peaceful. I have a counsellor. I can now schedule in a few things now & then for me. But I have become so unused to being able to make plans and keep them that I too got to a stage where the word “future” was meaningless for me personally. (Mind you, this is my 4th trip to EOL of someone I love and I haven’t got the stamina I used to have).

    Both of us have been involved in dementia activism for 3 years now, although V is mainly interested in the social side. As long as she enjoys getting on a stage we’ll continue working as a team.

    I don’t know how strong I can still be. This time I don’t have my work, and all that goes with that,e.g. friends, stimulation, being out & about (I had to end my consultancy to support V). I see not only cracks in my “armour” but gaping holes! So I’m off on a 3 day weekend soon to see friends. It’s taken a lot of organizing and goodwill from local friends as well as professionals.

    I used to wonder about you and others who have supported people with dementia and still continue to work in the field. I now suspect I’m no different, that I’ll continue on when V no longer can. Maybe I’ll take a break from dementia activism when she’s gone, maybe I’ll die before her.

    Dementia consumes so much in its path. It can’t be ignored, so I reckon that now that it has taken precedence over everything else I may as well go with the flow and enjoy the ride as best I can….while carving out a bit of space/time to maintain at least my health. Cheers!

    • Pippa Kelly 17th July 2017 at 4:18 pm #

      Dear Lynda, what a heartfelt comment. Thank you for taking the time to make it – I really do wonder whether being a family carer (even as I was, from a distance) is one of those rare things that you only truly understand once you have experienced it. So many people I have met through my dementia writing who are working to make life better for those with dementia and their loved ones have been personally affected by it, and now want to make a difference.

  3. Beverley 8th August 2017 at 8:46 am #

    Dear Pippa
    My goodness I have just woken after a weekend of feeling really poorly with a tummy big, to rush to my phone to check there were no missed phone calls from either the nursing home my Dad is in or the sheltered accommodation my Mum is in, your words have me in tears, everything you say is how we all as carers feel, especially when you have tried to look after your loved ones at home, and eventually it has proved impossible, the many hours as you say with Drs appointments, constant hospital visits after numerous Falls, pnuemonia,and of course the fights for CHC, appeals , resolution meetings, etc etc and of course the horrendous guilt of leaving your loved ones with strangers, wondering if they are being cared for properly, if they are frightened, and do they forgive you for having to leave them in a place they don’t know with strangers, every day is the same waiting for that phone call , that something is wrong, and if you do manage a day of normality or even of enjoyment, the next day is filled with guilt that maybe you should have visited or called to check all is well , the years are flying passed and I feel time with my family and grandchildren is being missed, but we are torn into many pieces trying to do what is right, our duty, our obligations and so on. Enough of my rambling we all know how it is, we are not alone thank God xxx

    • Pippa Kelly 11th September 2017 at 12:39 pm #

      Good luck with everything Beverley – it is so, so tough for you right now. I am talking at a carers’ conference in Oxfordshire in November and will include some of your thoughts in my speech. You are right: you are not alone.

  4. Helen Barbour 8th August 2017 at 12:06 pm #

    Pippa, what an amazing post. So much of this reflects mine (and my sister’s) situation, supporting two parents with dementia – in my case from 110 miles away. I can relate to everything you say. Thank you for your honesty and for sharing your experiences. The more we carers can do that, and support each other, the better.

    • Pippa Kelly 11th September 2017 at 12:42 pm #

      Thanks Helen. So many of us go through this. I am giving a speech at Carers Oxfordshire conference on 24 November if you are in the area?

  5. John Massey 9th August 2017 at 8:26 am #

    Pippa, well done for writing this. So many peoples lives are permanently and irrecoverably affected by caring for close family relatives. And yet, society and the media never seems to really touch the subject. It is as though it is to be somewhat “hidden” from peoples busy lives.

  6. Louise 9th August 2017 at 6:46 pm #

    My Father at 82 died peacefully at home in his wife’s arms. Himself and my Mother had tremendous support through his illness. There was plenty of time to prepare, to come to terms of his end of life. In fact it has been said he had a good death…..he himself said he was ready! No money was exchanged (Though quite a big sum was donated to the charity of his long illness) for all the nursing care, the emotional and physical help that he and my Mother needed and had. It did not end after he passed. Both myself and Mother were offered counselling after! …..yes it was Cancer. Not one time did we feel alone.

    Now a decade later it’s been 4 years where I have been on the vicious journey with my Mother having Alzheimer’s. Through the diagnosis, the helping her in little things then rapidly with all daily chores to eventually moving in which lasted 8 months where the horrendous decision was made for her to enter a care home. (We lived in a flat and she became a wanderer with difficult toilet issues. Plus I myself still have to earn an income. )
    Apart from a wonderful local woman who helped out with Mum on the days I worked I had NO support from the Alzheimer’s society not from the want of trying,. ( unlike the cancer society with my father.) No constructive help from social services. Just cups of tea and piles of forms to read! On one occasion they had to cancel never to make another appointment. GP was hopeless.
    Now I’m at the chapter of this nightmare journey dealing with care home issues and CHC funding turned down.
    When my Mother does eventually pass to a more peaceful brighter place any donations will be gladly given once more to the Cancer Society. For there dedicated researching, giving support and advice to all the family involved, a place where people can pass on with dignity and love. NOT The Alzheimer’s society who need to take a big leaf out of their book! It’s not just all about research. Lots of family’s whole life’s are sinking due to this most horrific, cruel disease.
    THERE NEEDS ALOT MORE SUPPORT ALL ROUND. FROM THE POWERS ABOVE!

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