Tonight, I need your advice. What should I do?

Imagine the following situation. Hypothetically.

Over the past months, a care agency has delivered just over one third of the care hours they were contracted to deliver. We told them repeatedly that the situation was unsustainable and was putting Pádraig and us at risk.

At a meeting three weeks ago, we told them that we were at breaking point. We have an extremely difficult situation coming up at home and cannot continue to cover hours that should be covered by the agency – on top of the hours we have to cover ourselves anyway.

Following the meeting, I had expected improvements in the situation. Yet, nothing happened. The co-ordinator went on two weeks’ leave and her replacement did not do anything that would have aliviated the situation.

So I advertised, shortlisted, interviewed and trialled a highly qualified and experience carer who is ready to start. All in one week. I did what I would have expected the agency to do myself. I now want the agency to cover that carer’s salary which is broadly in line with what they pay their employees. Unfortunately, instead of being grateful for my efforts, they decline and are saying ‘no’.

I’ve thought about –

– getting a good lawyer to take them to Court;

– employing the carer and send an invoice to the agency; bringing them to Court if they don’t pay;

– ringing all the journalists I know to tell them that this agency has been in breach of their contractual obligations for months, are leaving us high and dry and are putting Pádraig’s and our health at risk;

– writing and ringing our TDs, members of parliament, as well as the Department of Health and the HSE HQ;

– starting a one-man demonstration outside of the agency’s HQ;

– all of the above.

In such a situation, what do you think should I do? What would be your advice? Would it be reasonable in this situation to be unreasonable, to be outraged, and to become really, really difficult?

“He who has a why to live can bear almost any how.” (Nietzsche)

Last week, a very good friend gave me a book as a present which must be one of the most encouraging books ever written. I’ve only started to read it although I would have finished it several times over, would I not be too tired when I find time to start reading. I want to share a few paragraphs with you which I found deeply inspiring.

Gordon, W. Allport, a former professor of psychology at Harvard University, wrote in his preface to Viktor E. Frankl’s book “Man’s Search For Meaning” in which he pays tribute to hope from the Holocaust:

Hunger, humiliation, fear and deep anger at injustice are rendered tolerable by closely guarded images of beloved persons, by religion, by a grim sense of humour, and even by glimpses of the healing beauties of nature – a tree or a sunset.

But these moments of comfort do not establish the will to live unless they help the prisoner make larger sense out of his apparently senseless suffering. It is here that we encounter the central theme of existentialism: to live is to suffer, to survive is to find meaning in the suffering. If there is a purpose in life at all, there must be a purpose in suffering and dying. But no man can tell another what this purpose is. Each must find out for himself, and must accept the responsibility that this answer prescribes.

Frankl himself, a Holocaust survivor, who lost most of his family in concentration camps, in his preface to the 2004 edition of the book, writes:

I had simply wanted to convey to the reader by way of a concrete example tat life holds a potential meaning under any condition, even the most miserable ones. And I thought that if the point were demonstrated in a situation as extreme as that in a concentration camp, my book might gain a hearing. I therefore felt responsible for writing down what I had gone through, for I thought it might be helpful to people who are prone to despair.

For success, like happiness, cannot be pursued; it must ensue, and it only does so as the unintended side-effect of one’s dedication to a cause greater than oneself or as the by-product of one’s surrender to a person other than oneself. Happiness must happen, and the same holds for success: you have to let it happen by not caring about it.

Postscript

Here is a postscript to yesterday’s post about the Department’s of Health Consultation about home care (closing date tomorrow afternoon). I thought it would be interesting to read what they say about (1) Quality Standards (surprisingly, there are no national standards for home care!) and (2) Training for Care Workers (even more surprisingly, there is no minimum level of training required in order to be a home care worker in Ireland!).

Question on Quality Standards

At the moment, there are no national standards for home care. This means that the quality of home care can differ among home care providers. Other countries have introduced national standards. We would like to know your views on whether or not you think national quality standards should apply in the future to home care providers in Ireland?

Question on Training for Care Workers

Currently, there is no minimum level of training required in order to be a home care worker in Ireland, though many have completed relevant training. Other countries have introduced minimum training levels in order to help ensure a better quality of service. We would like to know whether or not you think this would be a good idea for Ireland.
Do you think that formal home care workers should have to complete a minimum level of training that would be set by the Government?

The Irish Statute Books published by the Attorney General contain regulations about how to run a restaurant (S.I. No. 147/1988 – Special Restaurant Licence (Standards) Regulations, 1988).

If you want to run a restaurant you need to be qualified, experienced, and capable. Your cook needs to hold a recognised qualification, and you can only employ properly skilled staff. That’s the law and you were probably aware of it.

1) The restaurant shall be managed by, and under the continuous supervision of, a competent person who has adequate catering experience and training and is fully capable of operating the restaurant to the standards set out in these Regulations.

(2) The person in charge of the preparation of meals shall be a person who holds a recognised qualification in catering or has practical experience in the preparation of meals of a high standard, and shall have a thorough knowledge of the supervision of a restaurant kitchen.

(3) Properly skilled staff shall be employed in all departments of the restaurant and provide a satisfactory standard of service during the hours in which meals are served.

There are regulations about toilets in the restaurant, e.g. that you need toilets for males and females (they need to update that legislation:) and that toilets shall contain water closets (who would have thought!). That’s the law and you were probably aware of it.

9. (1) A restaurant shall have cloakroom facilities and toilets.

(2) Toilets shall be provided separately for male and female customers and be easily accessible from all public areas of the restaurant.

(3) Such toilets shall contain:

( a ) water closets (hereinafter referred to as WC) in separate compartments;

( b ) fixed wash-hand basins equipped with plumbing for the continuous supply of hot and cold water and the disposal of waste.

(4) The minimum number and type of sanitary fittings installed in such toilets shall be calculated in relation to the number of diners to be accommodated in the premises at any one time as set out in the Table to this Regulation.

When I filled in the online form of the HSE’s public consultation process on home care, I read the following:

There is currently no statutory regulation of home care services. A recent national opinion poll commissioned by the Health Information and Quality Authority6 (HIQA) found that 76% of people that responded mistakenly thought that home care services are independently regulated or monitored.

Please, take a minute and read the above again.

You read correctly: no regulations. Nil. Nothing. Nada.

There are legal regulations about toilets in restaurants – but none about home care. A care agency could sent an unqualified, unexperienced taxi driver to look after Pádraig. They could not comply with their contractual obligations. And there are no statutory obligations that would legally prevent them from doing this. If we let them.

Can you believe it?

A day so packed I don’t remember the details. I’ll go to bed now, sleep, and hope it’ll come back to me tomorrow.

You can do it with your head movements and your eyes using a smart phone connected to a headset. And off you go! You can explore the world from above flying a drone carrying your ‘eyes’ in the form of a super small camera. – That’s what Pádraig did today assisted by a flight supervisor in the Wicklow mountains for a camera crew preparing a TV programme for RTE. The drone and related technology was supplied by the SMARTLab at UCD, who collaborate with An Saol researching several exciting technologies allowing sABI survivors to connect with to he world.

It was a long, tiring and difficult day out. But it was all worth it. By Christmas, Pádraig should be able to fly his own drone!

A few days ago, Pádraig got this new switch that sits between his thumb and index finger. It’s just another sign of the huge progress he is making that he is now able to consistently use his thumb to press that switch. It’s so much lighter, so much less in-the-way than the yellow one he is using at the moment with his foot. It doesn’t beep, it doesn’t give auditory feedback, but it’s connected to the Tobii computer (and its Communicator 5 software).

For the first time, I managed today to add a ‘page set’ (that box with all the pictures in it) and edit an existing one. I’m so proud of myself:)

Tomorrow morning, really early, before the rain and the wind, Pádraig, a HEP and myself be driving up to Wicklow to meet some new Dreamboaters, absolutely mad people: film makers, drone pilots, a professor, and an incredibly nice lady giving us access to her gorgeous house.

I’m not sure what’s going to happen there, but I’m curious and can’t wait to find out.

A friend in Germany told me recently he preferred to read newspaper “Die Zeit” rather than the news journal “Der Spiegel” because “Die Zeit” was “unaufgeregt”. I’ve no idea how to translate this word. To be honest, I didn’t even know that it existed in German. Maybe he just made it up himself?

It means something like “not panicky”, “not headline grabbing”, “un-agitated”, “not excited”. So here was someone who liked his news and his news analysis in a not-excited-way. When I listen to the news these days, and think of my friend, I wonder whether he is listening to the news at all. Or whether he has decided that this is all getting too much.

Pádraig was ‘unaufgeregt’ getting towards the end of his studies, ‘unaufgeregt’ in a good way. Of course, he could get excited and he knew what he wanted. But he had reached that point where he managed to take other people’s bad humour, their temper, their lack of being reasonable, with a smile, maybe just shaking his head in disbelieve.

Now I’m so much older and haven’t managed to reach that state of mind. So I asked someone who knows Pádraig quite well how Pádraig managed to get there. The answer  I got was: Pádraig was happy.

It was that happiness that allowed him to take on life (and people) with a wink in his eyes. To be cool about all the annoying things in life. To be completely and utterly ‘unaufgeregt’, in the best possible sense of the word.

The question is not really if. The question is when.

I’m banging my head against the wall that needs to be knocked. I’m telling anybody and everybody who I can make listen that what is going on is not just unjust but also completely senseless. I make my private life public. I really annoy people who think I should be grateful for what Pádraig is getting rather than highlighting deficiencies. I make a little bit of progress, but really just a little bit. I risk my health and that of those around me because I’m not really paying sufficient attention to the warning signs.

It’s not a question if. It’s when.

Pádraig continues to make progress. Over the weekend, he had his first steak: not minced but cut into (thin) slices. The way I’d like it. And you should have seen how he enjoyed it. In the afternoon, he has a slice of toast (no crusts, those are for me:) with butter which he really enjoys. He smiles when people make (good) jokes. He is able to hold his head when we stand together, even if only for a second – those will become more.

It’s clearly not if. It’s just when.

That wall will come down and if it takes my bloody head that keeps knocking against it. The idea that young people with their lives ahead of them can just be abandoned in nursing homes to rot away or in their homes with just the basic, functional healthcare with no rehab being provided will soon become unacceptable in Ireland. People will not have to give up their own lives completely as a subsequence of a severe acquired brain injury, they will get the support they need to continue and adapt their lives. A fair system will offer help where it is needed.

All this will happen – we just don’t know when.

I’d say: the sooner the better, if we want to avoid even more casualties in these appalling situations.

From the current edition of the German journal “Not”.

22_Kurs_neues_Leben all

When the iconic Village Voice published, after a 62-year long proud record as the “cultural touchstone for the progressive thought”, according to The Guardian, their last print edition last Thursday, they picked a picture of Bob Dylan in Christopher Park near the old Voice offices off Sheridan Square, January 22, 1965, as their cover photo.

They also included images of the “infamous denizens of the downtown realm”, William Burroughs (with sword), the Beastie Boys, Madonna, and Jack Kerouac.

An institution died and disappeared from the streets (and its famous red distribution boxes) passing on into the digital world where it will continue its life.

I’ve often thought that this will, ultimately, be our fate as well: we’ll disappear from the streets and continue life in a digital world where our physical bodies will become superfluous and, eventually, an obstacle in our quest for adventure, excitement, and life style, the good things in life – who would look for the ‘bad’ things?

But here is the problem: life isn’t always good. And it’s being able to deal with the difficult aspects of life that allows us to grow. (Although there is a thin line between ‘growing’ because of a challenge and complete system failure leading to disaster.)

For the first time in months, we had a carer coming in on a Saturday. Although it was only for an hour, it was great and allowed Pádraig to have a shower and spend a bit of time in his standing bed. It allowed one of us to do some work that had to be done today somewhere else.

And last but not least: for the first time since his accident, Pádraig had a bit of steak, cut in fine slices, but not minced!