There was an old man called Michael Finnegan...a Carer's Journey Part 3a

He grew whiskers on his chin-egan
The wind came out and blew them in-egan
Poor old Michael Finnegan, begin again...

And so, must you begin-egan, dear old (and not-so-old) but oh most certainly, weary carer.
So must you begin-egan, no matter what winds might blow and buffet you.

For at the end of the "journey" (how I have come to dislike that word!), at the end of your "carer's career", you will probably have to return to work to recoup all the hundreds and thousands you have spent in caring.

Somewhere, there is a job description for carers. No time off, no public holidays, no pay - most carers get the joke. What it doesn't say, however, is that there is no chance of promotion or career progression. No retirement fund. Because when it's over, it's over and all you can do is hope that you can begin-egan.

So here's what I wrote to the government:

I am writing to you as an ex-carer and as a current carer for parents who had and have dementia and who have continued to live at home. 

I cared for Mum for 17 years until she died last year, firstly as a long-distance carer, finally as a hands-on carer when I relinquished a much-loved job and career to fulfill my duty of care as Mum’s Welfare Guardian and a duty of love as her daughter.

My experience as a carer has been life changing; and I don’t regret the sacrifices that we, as a family, have had to make. But so much is written and spoken about the role of carers in our society; about the £ 10 Bn+ or so, that we save the economy; about the drive to promote “Care in the Community” and the need to avoid unnecessary admission to hospitals, that I feel I must comment.

The “career” of the long-distance carer spans up to two decades, sometimes more. That means that many of us are holding down two jobs at the same time, that of working and paying our taxes; and that of caring and meeting high costs for which there is no tax relief. In my job as a self-employed minerals analyst, I travelled extensively. Each time I left, I had to put live-in care in place for Mum – none of which was chargeable to a job, none of which was tax deductible, all of which was essential for her welfare and for my peace of mind.

In addition to live-in care, I had to fund gloves, wipes, and disposable aprons, replace laundry appliances which were in continual use, carpets, redecorate and pay year-round heating bills.  And in the last seven years of Mum’s life, I gave up work to care for her. I received the welcome support of 65% funding via Direct Payments/Self-Directed Support but inevitably lost my place on my own career ladder. I lost a regular income. My savings (£ 100,000+) depleted rapidly: as Mum’s care needs grew, they were used to make up the shortfall and feed and maintain my own family. As you know, for most of us, the Carer’s Allowance is a pittance that barely covers grocery bills.

I fought hard for Mum to be able to live at home, a wish that she had articulated clearly prior to the onset of dementia. Abandonment ran like a leitmotif through her life: consigned to an orphanage at three, separated then divorced at sixty by a husband she adored; then as dementia entangled her mind, left behind by others in her family and by longtime friends who simply couldn’t cope. For the last ten years of her life, she never saw my brother’s children again while my brother, her other Guardian,  visited only two-three times a year. Life is unfair – but perhaps it needn’t be this unremittingly hard.

Carers can get concessions, here and there, at the cinema perhaps, or even in sports clubs. If we have the energy, some of us try to stay healthy and to fight that carer stress to which we are all prone. But many of these concessions are based on accompanying the person for whom you care. It’s a good idea for those in the early phase of dementia. For those in the mid-latter stages of the disease, it’s quite impossible.  So at a time when we are all urged to take responsibility for our own welfare, carers are again excluded by the high fees that most leisure and sports clubs charge – yet we are one section of society who perhaps needs it most.

I approached Live Active several years ago now to press for greater concessions for carers but my pleas fell on deaf ears. I doubt very much whether there would be armies of carers fighting for space on the treadmills but it would have been nice to help a few.

Care in the Community is a laudable aim and I see so many initiatives that are given huge funding from the Lottery Fund. Here at the very bottom, it doesn’t seem as if much has changed. 

The NHS and SS are still left hand, right hand, oddly malco-ordinated. Why is there still no central database of information that is password protected? Why must we recount our profiles ten times over for it to be diligently recorded by each agency that visits in a different format and on a different database? Yes, I know about integration. But people make the rules and the mindset. And just reciting "person-centred care and personhood" like a mantra doesn't exactly work on the carer's chakra.

Care in the community, dementia-friendly communities. As the disease progresses, and care needs amplify, who will provide hospital beds, variable airflow mattresses, hoists, bath aids, stand aids, rise and recline chairs and wheelchairs? I bought rise and recline chairs and wheelchairs off eBay. I installed a lap-dancer’s pole to enable Mum to stand when she was suddenly discharged from hospital as the ward closed due to a virus. Caring at home means that you need answers urgently – not after forms are filled in duplicate and triplicate, the budget approved, item checked and then installed ? weeks, months later.  And if you are fortunate enough to secure a hoist, can you drive it over carpets, can you manoeuvre it through normal UK home doors? Most people can’t.  No one seems to have thought through these practicalities.

There is indeed provision for hospital beds at home:  in the last two weeks of life.  By this time, as a carer, your back is probably already damaged by the lifts and half- lifts that we all do over and over again to make those whom we care for, comfortable and safe. As carers, particularly of those with dementia, we do everything we can to keep the environment the same. To maintain continuity.  Hospital beds probably need to be installed long before death casts its lengthening shadow.

And hospital. Oh, that sad threatening place where patients have become service-users, clients and customers. It’s not Tesco’s or Apple Genius bars. The word “patient” derives from patior (Latin: to suffer) and there is real suffering. And it’s not disrespectful to acknowledge that. 

Butterflies above hospital beds and ‘About Me’ booklets don’t cut it when those who are given buzzers have them placed out of reach because they buzz too often. When the 'About Me' booklet is actually about the person in another ward, in another bed, in another place.

The criticism of dementia care in hospital is legion: food that is placed out of reach; un-takeable tablets and medications; no-one there for a reassuring hug (oh, those person-centred protocols!) but plenty of reprimands for the patient who frets or wanders. People left to pee and soil their beds. Nurses* who won’t nurse because of…what? Degrees? Pointy-haired bosses? Porters who feel bad because they cannot assist carers to get elderly ladies out of a car for an appointment because they ”cannot touch female patients”. On one occasion, I approached the paramedics out of desperation. “We can come if you push your mother out of the car onto the tarmac,” they said. This doesn’t cost money to fix. It just needs common sense. Booking a porter shouldn’t be impossible. We need leadership instead of bureaucracy and administrators.

One day, I realized that Mum was severely at risk if we were to have a fire at home. Occupational Therapy proposed a ramp. It was a sort of highway superstructure that would have taken up most of the front lawn and drive, and cost around £ 10,000 or more. What if the fire had been at the front? No way to evacuate then and no quick access for the Fire Service, so how did that tick health and safety boxes? 

I ordered a top of the range ramp at £ 200+/- that we could use safely at the front or the back. But because it wasn’t part of The Plan, I had to fund it alone. Competent professionals are being straightjacketed into solutions that fail to serve the very people whom they aim to help.

WHO defines palliative care as care for those who have long-term degenerative illnesses, not only for the dying. Yet in dementia, palliative care is more often than not brought in as death approaches. Pain is relatively easy to deal with – if only you can get the referral to the experts when it’s needed, and not when the system deems fit.

And when your caring days are ended, where do “old” carers go? Our time-management skills are second-to-none; our stamina is tried and tested; we’re the ones who have tenacity, who don’t give up, who “can do’ and ‘will do’. Many carers, sadly, will be so crippled by their endless hours of caring that they are too exhausted physically and emotionally to begin again. Yet there will be some, like me, who are still just about on their feet. How do we get back to work to recoup those hollowed-out funds? Where do we go to retrain? 

As a graduate apparently, I have no right to further paid education.

After Mum died, I went to the Job Centre and received two weeks’ benefit. To spend my time applying for jobs for which I have no updated skills just to prove that I was “trying” made no sense. So I embarked on an IT course at my own expense (excluded from funding because of my degree) to update/upgrade skills. My old job/career is closed to me: associates, networks, knowledge skills have moved on. I enquired about retraining as a nurse for palliative care. Too old. An accelerated law degree? Would I get a placement post university in a law firm at 50+ years old? A year ago, desperate for some funds coming in, I took a job as a cleaner.

I’m not at all too proud to work but is this really all that carers can hope for? I’m still caring for our one surviving parent, up during the night; still with two dependent and wonderful children; and out on my knees cleaning someone else’s toilet.

In the last thirty years, I’ve held down my own job concomitant with caring; fulfilled my duty as a daughter and a Guardian, saved my country huge sums of money (apparently). I’ve given up my job, my time, my own funds and staved off those unwanted admissions to hospital.  I’ve served on carers’ committees, steering committees, policy input committees.  Always with the hope that somehow, I could improve the lot of those who care and who are cared for – but I wonder how many psychiatrists, doctors, therapists would pay to sit in these meetings, as all carers must. Because we pay to put in care when we are not doing the caring. I and others like me, have served longer than the dedicated men and women who serve in the armed forces.

Part 3b of New Begin-egans to follow shortly...