How We Value Care

 

On March 8th we will be asked to vote on a referendum that will insert article 42B into the Irish constitution - the so-called care referendum.

Here is the wording that if the referendum passes, will form part of our constitutional legislation:

“The State recognises that the provision of care, by members of a family to one another by reason of the bonds that exist among them, gives to society a support without which the common good cannot be achieved, and shall strive to support such provision.”

As a carer, when I read those words I understand that, if passed, the constitution will now place all of the responsibility of care on my family and the state will 'strive' to support us. This makes me very uncomfortable for many reasons. 

For a start - it denies any rights to the carer or the person for whom they are caring. Although this wording recognises how carers contribute to the common good - there are no rights enshrined here. You'll forgive me if I get sniffy about recognition without rights. Let me put it this way - here's a loose translation in colloquial Hiberno-English - the wording roughly means 'Aren't you all wonderful, you great carers and sure wouldn't we be lost without you and all the great caring you do and if we've a spare few bob in a budget we might throw you the odd crumb'.

Those advocating for a Yes vote are a collection of all my normal advocates - Family Carers Ireland, the National Women's Council and may activists from the Repeal the 8th and Marriage Equality campaigns. None of whom have been able to tell me how this wording will improve my daily life. Family Carers Ireland state that it will 'potentially lead to more substantial and effective support from the state'. I'm not being funny but how are they gleaning that meaning from this wording? And how is potentially leading to more support any good to any poor carer working 24/7 without any access to respite?  They will forgive me if I quote my Boy Wonder and ask 'Are you having a giraffe?'.

The Yes campaign is basically saying 'Look we know the wording is a bit duff but sure isn't it a start, a step in the right direction?'. But it's not a start - at best it's a standing still, at worst it's a retrograde step. And excuse me sisters but surely you would all agree that a hierarchy of rights goes against everything that feminism stands for. During the Yes Equality campaign would you have said yes equality to the GBT but the L has to wait but not to worry this is a great first step and trust us we'll fight for you later? You are removing the 'women in the home' clause to replace it with the carer and people with disabilities in the home clause. Do you really not see it? By defining the locus of care as only within the family you are denying me and my son the right to live independently of each other solely because he has a disability. You are not only turning a blind eye to this you are actively campaigning to make it so.

Roderic O'Gorman is asking me to make like a turkey and vote for Christmas and then trust the process. That process i.e. engaging with the HSE and other state bodies to access care and support is, as any carer will tell you, nothing short of harrowing. It involves Olympic-level skills in bare-knuckle bureaucrat boxing, it demands an enormous cognitive load and often results in no support, leaving us exhausted, drained and without a marble to our names.

Those of you who followed my blog back in the day will remember the time I complained about Boy Wonder's lack of access to Speech Therapy and the local Primary Care manager wrote to me to remind me how much my son had already cost her? Or what about the time Enable Ireland employed that speech therapist they knew had been struck off in California because she was considered to be a danger to public safety? Or then there was all those Medical Card applications? Or the time we tried to get an appointment with CAHMS.  I could go on and I'm sure many carers could tell you equally mind numbing, soul crushing stories. I'm not special. Suffice it to say that bitter (and boy do I mean bitter) experience has thought me never to trust the process.

Ireland is the only country in the EU that doesn't have a right's-based access to support and services for people with disabilities. We had a huge opportunity with this referendum to meaningfully change the lives of carers and people with disabilities. Instead we've blown it with this patriarchal, patronising, capitalist privatisation of care dressed up in a meaningless word soup of an amendment. 

I will be voting NO to article 42b in the vain hope that we can push for better, because carers and amazing warriors like our Boy Wonder deserve better. I would be eternally grateful if you joined me.

Ten Years Ago Today

We didn't see it coming, or maybe we did but we just stuck our heads in the sand and hoped for the best. We work really hard at not 'going there' and we've actually got quite good at it.' Looking on the sunny side' has become something of an Olympic sport in our house, which has caused irreversible retina damage in the shape of a blind spot when it comes to worrying blood results.

It was a gradual climb, little increments of creatinine increases, a nasty flu that triggered a suspected rejection episode and then it all settled down again. Boy Wonder did what he always does - confounded science and dodged the odds. We were running free.

Last December, it caught up with us. We had out-run our luck, the new kidney was overworked. Like any self-respecting, fifty-year-old organ trying to keep up with demands of a busy fourteen-year-old boy, it had a meltdown.  The biopsy report took the ground from under me, rattled my retinas into a horribly clear vision of our Boy Wonder's impending kidney failure. We had time they assured us, it was Christmas week, we should go home collect ourselves and we'd make a plan in the new year.

Fate had other plans that plunged us into the Nightmare of Christmas. By the time Santa visited him in hospital we were preparing for a return to dialysis. We were at sea, adrift once again with no sight of the shore. Within four days he was reversing his misfortune, baffling the boffins and once again we set sail for a new normal. Our sunny side replaced by a robust set of storm shutters, we returned home to await the next move. The kidney was not going to last long.

So in keeping with tradition, Boy Wonder has done it again because against all odds (and then some) today we celebrate ten rip-roaring, spine tingling, belly laughing, beautiful years since the Other Kidney coughed up his spare lean, mean, peeing machine. We remember with awe, the humanity and professionalism of an incredible team of medics in Temple Street and the unwavering support of friends and family.

Today we think of all those waiting on the list, all those families in pause mode and we give thanks to those who in their darkest hours thought of us while their world fell around them and said yes to organ donation. Without your courage and humanity kids like our Boy Wonder wouldn't stand a chance.

Today we take stock, give thanks, exhale a little (but not too much) and we shake ourselves out, dust off the despair and think what the heck we've come this far, we might as well just keep going.

Cheers,
Ann

Lets Talk About Organ Donation

Not in keeping with family tradition, he arrived early. We were ill-prepared. We veer more towards the tardy side of the tracks in our house. It was quite early, a whole five weeks too early in fact. He looked perfect, if a little frail and vulnerable. He was quickly whisked off for assessment, a brief cuddle and then he was gone. I was bereft, confused and exhausted. They kept me informed, they were considerate, kind and very caring. But still. NICU is not the best of places for a first date with your newborn. It's busy with zombie parents shuffling through dread. I went home to sleep, he stayed behind. I rang every hour. Then they rang me. My worst nightmare. High speed ambulance. Dublin. And did we want to baptise him before he left? Adrenalin pumped and has kept pumping ever since.

Dublin spelled doom. The news was not good. He was missing some vital organs. Not a simple case of 'they're malformed' you understand, no his kidneys were properly missing, gone, vanished without trace. But yet he was here. Did he lose them? Leave them behind? Forget to pack them in his haste to meet us? It's a mystery that still perplexes.

Dialysis. A new word entered our home. It became our normal nocturnal routine. I would sit by his cot as he slept.  Listened to the machine whirr through an eleven-hour cycle. I quietly watched the fill, dwell and drain of the diuretic ritual while silently battling the dread. Tides of worries, hopes and dreams would fill, dwell and drain the chambers of my heart.

There are over eighty children in Ireland with End Stage Kidney Disease. All those mammies sitting beside whirring dialysis machines. All those milestones missed. I am a lucky one, his dad had a kidney to spare. My boy has a fully functioning, perfectly formed, second-hand peeing machine.  The worry has drained. The hopes and dreams can simply fill and dwell.

I wish those other mammies could get the same. Have the conversation. Get a donor card Text DONOR to 50050 today, don't put it off, these kids have already waited too long.

Cheers,
Ann

Medical Card: A Pyrrhic Victory

I don't know whether to be relieved or violently ill. I have seen a chain of events unfold over the last 48 hours that has really turned my stomach. It all started with a labour councillor calling to my door on Tuesday evening. He was, needless to say, met with an earful on my doorstep. He got quite a shock! I admit I may have flipped, just a teeny bit, but in my defence, I have been provoked beyond reason here.

He left with a flea in his ear and returned a few minutes later, pleading with me to contact the TD. I was at pains to point out that I shouldn't have to contact my elected representative - I was still old-fashioned enough to hope the system would just work! After I calmed down, I figured maybe it was time to play by the warped rules of the system; my daily tweets to the minister were getting me nowhere. So I dashed off an email to my local labour TD Mr. Derek Nolan. Within an hour I had been copied on his correspondence to the department on my behalf. Later that evening - after a week of silence - out of the Twittershpere pings a tweet from the Minister Alex White and the HSE HQ. All full of the joys of good PR and imploring me to liaise with them personally. So I liaised my little heart out and gave them chapter and verse of the whole sorry saga of the last 68 (working) days.

First thing this morning - I get an email from the minister to say he's looking into it! We've heard that one before. I wasn't expecting much, a few platitudes, a couple of duff excuses and then a cordial reminder to place a number one after the local candidate next time I decided to exercise my franchise.
An hour later another email arrives from the minister this time with full details of Boy Wonder's medical card: serial number, date of issue - the works. No explanation for the mess was offered, just a here you go - hope you're happy now - perfunctory response. They are trying to use my son's access to adequate health care as a vote gathering exercise. Well sorry to have to tell you guys - I'm taking the card and running as fast as my little legs will carry me away from anything to do with your rotten politics.

Obviously I'm massively relieved to finally have a medical card but I am also nauseated. I have the privilege of an education, I can tactically outwit these people. I can force them into giving my son his rights. There are many who can't. By last count 30,000 discretionary medical cards have been withdrawn since this government took office. This is injustice on an industrial scale and we need to shout stop. It's up to us now.

I'm counting on you all to take up the torch.You'll excuse me if I take a break from the barricades for a while. I'm battle weary and I have promised myself a large glass of wine.

Sláinte.

Cheers,
Ann

Medical Card Misery

Day 65 in the Big Brother Medical Card Misshap and the applicants are getting tetchy. Six million phone calls later and the card is still being 'processed'.

After my last post, I received a threatening letter from a medical card mandarin stating that despite repeated efforts to contact me, I had still refused to submit the Other Kidney's accounts and that if I didn't hop to sharpish Boy Wonder's card would be cancelled in 21 days. Needless to say, I went mental and took to the phone! Got to speak to a supervisor who had definitely been to charm school. He used all the right language; phrases like 'I'll take ownership of your case' and 'on behalf of my colleagues here in the Client Registration Unit, can I just apologise for this inconvenience'. I'm glad he thinks it's just an inconvenience. In my life it is the stuff of monumental meltdowns requiring intravenous wine, gin and or chocolate.

His charm school shtick worked for a while, the follow up email helped I guess. Two weeks, two phone calls and a flat 'we're still processing your claim' later I am beyond charm. I'm proper blue blazing. 65 days ago I sent a complete application - so complete a trained monkey could have reissued the medical card. I have followed all the rules, I have done what they asked - four times now and still nothing. Our file is not complicated. It's rubber stamp able. 65 days and still we wait.

A robust Rioja anyone?

Cheers,
Ann

The Weird World of Medical Card Applications.

The worry started back in November. I countered it by strategising. I clocked up a few sleepless nights and listening to Joe Duffy didn't help. Once they announced the new mercenary tactics of the Medical Card application process I could smell trouble ahead. Skilled as I am in bare-armed administrative combat, I gathered my documentation early, acquiring a crack unit of facts, figures, medical assessments, revenue forms, receipts all printed, primed and poised for battle.

There were three forms to fill in: one for both kidneys and one each for the girls, except it should have only been one form but since the computer had spat out three, the man at the end of the helpline said I needed to fill out three. Now this is where it starts to get tricky: my thirteen-year-old daughter had to list me and the two kidneys as her dependents, I in turn had to list her and Junior Kidney as my dependant with Senior Kidney as my spouse while the Senior Kidney had to take responsibility for the lot of us and list us all as his dependants - simple.

So I duly filled out the forms, assigned the appropriate spouses and dependants and attached the small forest of supporting documentation, in triplicate. I was even anal enough to number each supporting document and cross reference it with a carefully constructed index page. You could say I threw a complete stationary salvo - both barrels- at the situation. With years of form filling and bureaucracy baiting behind me, I took the wise step to send - the by now weighty file - via registered post on the twelfth day of February.

I had gleefully ticked every box, dotted every 'i' crossed every 't' and rewarded myself with the smug knowledge that there was nothing they could throw at me, I had covered every base. I sat back and waited for either a grenade to pop or a medical card to arrive; either scenario being entirely possible under the current administration.

I got the first letter demanding copies of documents (that I had already sent) on March 10th, they were immediately re-sent.  I capitulated as I figured it was their word (and the receipt for the registered letter) against mine. They were logged as present in HSE HQ on March 18.

Last week I took to the helpline again to check on progress, I couldn't get through because the helpful automated system where you key in the office you require was stuck on the welcome message. I eventually breached their telecommunications defences by going through the general national helpline, that only took me an hour to figure out. I spoke to a human and she confirmed receipt of documents and that an answer would be forthcoming within ten days.

I got a text today asking for the same documents to be sent again! Eyebrow twitching and nerves jangling I got on the phone again and here's a précis of the conversation:

Nice HSE lady: Yes we have the documents they were logged on March 18 but unfortunately they weren't verified. You'll have to send them again.

Demented HSE Client (AKA me) Well can't you just verify them now then?

Nice HSE Lady: No sorry the people who verify documents and indeed the documents they verify are in another building so you'll have to send them again.

Demented HSE Client: I'm not being funny but I've sent them twice already - what guarantee do I have that they will arrive and be verified this time?

Nice HSE Lady: Hold on let me check.
Pause for horrible phone hold music

Nice HSE Lady: It's coming up here on the computer that you are eligible but we can't issue the cards without the documents.

Demented HSE Client: But how can you determine that we are eligible if you say you don't have our documents?

Nice HSE Lady: Well your situation hasn't changed.

Demented HSE Client: But how do you know our situation hasn't changed without our proof of income - one of the mystery missing documents?

Nice HSE Lady: That's a good one! Listen could you just send them again - I'll give you a fax number and an email address so you can prove you sent them.

Demented HSE Client: (who is now thinking that they will find that lost plane in the Indian Ocean faster than the Other Kidney's tax return, decides to raise the white flag and reaches for a pen to take down the number) Ok - do you have a reference number for my file and how can I check that you got them this time - should I ring tomorrow?

Nice HSE Lady: Oh God no - don't ring tomorrow - give us at least 72 hours!

So I collected myself and the documents and placed them in my antique fax machine. Can you guess what happened next? The number was engaged - for two hours.

I have had more success writing to Santa Claus.

I need more cake to cope with this.

Cheers,
Ann

Remembering Mammies this Organ Donor Awareness Week

I had reason to travel on the old Galway - Dublin road this weekend. It had been years since I had laid eyes on such once-familiar towns as Horseleap, Milltown Pass, Moate and Enfield. I was on my way to a birthday celebration for a wonderful woman, a fellow graduate of the Renal Unit Mammies PhD Course in Transplant Survival Skills.  Seeing these towns again was very strange.  It was the reliable traffic jam in Moate that sparked a flood of memories. I remembered our kids side by side on dialysis machines, three days a week we would turn up to get hooked up. As mammies we bonded over our shared hospital experiences and our mutual love for the finer things in life, like  fine wine (well any wine actually) and gooey cake.

I remembered all those days spent in the back of the taxi, travelling four hours to the hospital, spending four hours on the dialysis machine and then back on the road for four more gruelling hours to get home. I remembered the various taxi drivers, some so kind they almost made me weep and some so insensitive they made me want to scream. The one who kept talking, even when I was helplessly exhausted and craving silence. He would subject me to eight hours of meaningless prattle about football matches while he constantly referred to women as 'fine bits of stuff'. I remembered arriving home from these trips feeling like I was trapped in some cruel recurring nightmare. I remembered how this mammy was my sanity valve, how her sense of humour would pull me back from the brink.

I remembered the day I got her text saying her daughter had got 'the call' - I screamed so loud the whole house came running and as I passed on the wonderful news of a new kidney, we all cried with joy, yet too scared to dare to hope. We spread the news to all the good pray-ers we knew, those still blessed with faith that they may intercede on her behalf.  I look at our two happy kids now and think of all the mammies who are currently supporting each other while sitting beside whirring dialysis machines. All those mammies afraid to exhale in case the skimpy scaffolding of their suspended lives comes crashing down.  I think of the mammies who, at a time when the their lives had fallen apart, chose to gift life to our children.

Organ Donation affects the entire family, that of donors and recipients. For the sake of mammies everywhere please have the organ donor conversation with your family and make your wishes known to your loved ones.

Cheers,
Ann

• email: donor@ika.ie
• freetext DONOR to 50050
• lo call 1890 543639
• By post to: Freepost, Donor House, Irish Kidney Association, 
• Park West, Dublin 12