It was a mixed up day. We got up too early, routine went out the window, time seemed to move back and forth. Now, that the day is over, I am happy it is and that all’s well.

Pat went into hospital for a procedure and will stay there a few days. Pádraig had a few visitors and family helpers who went out for a walk with him and helped with breakfast and lunch.

I got a phone call from the mother whose daughter survived a very severe brain injury ten years ago. She had read the article I wrote for the German magazine “Not” (nothing got to do with the English “not”:). She said that there were massive similarities between what happened to her daughter and how they were trying to deal with the situation and what happened to Pádraig. She and her other children are therapists. She invited us over to her house, to stay with her for free, to exchange experiences and to learn from each other. They live in the eastern part of Germany, in the countryside.

I didn’t have the time to tell Pádraig about the invitation yet, but I am sure he’ll go for it! What an opportunity to help each other out. To get to know like-minded people. To learn, to travel, to have fun, and to share positive energy.

Which brings me back to the last few days. I really do have to remind myself to invest all my energy into good stuff. Into work that really will affect change for Pádraig, for us, for other survivors and their families and for society. This will only happy in a positive way. Trying to convince people who won’t change and don’t want to will only result in bitterness, frustration and often almost unbearable stress – and who would want that?

Have you ever thought, maybe on a particular occasion, at some specific moment in your life, that the world is too big and complex for you? A moment when you felt that there were so many things you were deeply connected to happening all at the same time and you had to constantly switch between them to keep them moving? I am having a moment like that. It’s a weird feeling. Scary too. Because most things in life, those things I’m connected to, maybe responsible for, and the people I really care for, life itself, all seem so fragile that I fear, at a blink, in a moment I cannot choose, loosing what is most precious. It’s a fear I knew existed but didn’t know four years ago, fear I’m now living with each and every day.

First, she commented on someone’s ringtone (“In the mood”) in the packed tram and told me her father played the trumpet and had taught her the piano. I smiled and sid I liked Glen Miller too. She went on to say how she didn’t understand that men always do their own stuff and women theirs because herself and her husband liked so much to go out to concerts together. I smiled. On the way out of the tram, she was trying to find out what I was doing at the fair and told me that she was working for the Dusseldorf health administration and was a doctor, originally from the Ukraine. I didn’t know how to react. When I finally gave in to her curiosity and told her about Pádraig and An Saol I realised (too late) that there are times when lies can be justified. But then, just before we went our own ways, she said that Pádraig needed to be treated like any other young man. That we have to interact with him as we’ve always done. No different. And that that included loving, and giving out to him when that was necessary. Encouraging him to go out. Being normal with him, not patronising. Laughing, shouting and singing around him, not being sad or desperate.

It reminded me of a story from a visit with Pádraig to the supermarket someone told me the other day. When they went into the supermarket, a “caring” lady said to them “Oh, isn’t this great and isn’t he a great help going shopping”, to which the answer was “Well, he isn’t really, not at all, except that we can hang our shopping bags on the wheelchair.” – Pádraig had a huge smile on his face following the conversation. He got the humour, as well as the seriousness of that exchange. Not sure if the lady did… The thing is: just because a grown up man sits in a wheelchair and can’t talk, you don’t have to treat him like a five-year old.

Pádraig had a busy day today and a brilliant late afternoon, the almost traditional Thursday-friends-visiting afternoon with four of his friends creating an energy and an atmosphere that was so uplifting that it kept him going for hours. It’s a real credit to his friends that they keep this going and manage to bring a lot of (young:) life to the house on Thursdays!

I was at Europe’s biggest rehabilitation exhibition and fair in Düsseldorf today and was in awe of the futuristic exoskeleton suits, the brilliantly designed camper vans for wheelchair drivers, and the self-drive configurable cars for persons with different levels of disabilities. I met some people I knew, refreshed my contacts with the An Saol pilot project partners, and started to figure out a possible deal with Hocoma, the company who’ll be supplying some of the equipment for An Saol. I also talked to the company whose Irish partner didn’t want to sell us equipment because of their dependency from their main client (long story:). All in all a really long, good day.

The Charities Regulatory Authority of Ireland today approved the An Saol Foundation as a charity. It took us months, if not year, to get to this point. Why? Because there have been so many scandals around charities in Ireland that they have made it really really difficult to register new charities. Now, we just have to register with Revenue for charitable tax exemption – and we’re ready to sign the Service Level Agreement (SLA) with the HSE to start implementing the An Saol pilot project.

Wednesday is Music Therapy day. Today, Dolly came along to play her favourite role as a therapy dog. The happiness of the two sitting in the wheelchair was contagious and made me think whether we should try and get a therapy dog for Pádraig (and us:). The vibes were just awesome!

It was a whirlwind day. After the usual 2 hours of getting up with some stretches and standing, followed by breakfast, Pádraig met a new therapist who discussed with us her ideas of how to enable Pádraig to communicate better. Stuff around assistive technology. Quick visit to Beaumont’s eye clinic. Lunch. Swimming in Sandymount. Short rest. Some visitors. Dinner watching the news. Action Pádraig really enjoys.

Thank you for your opinions and advice about last night’s posts.

The incredible truth is that home care is not regulated in Ireland and carers are not required to have experience or qualifications (although many excellent carers do have both). Another incredible truth is that the Department of Health says that home care packages include home help and therapies – different and in addition to that supplied by the clinics in the community.

Virtually no-one seems to know about this.

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!