Celebrating carers who always put others first is a dangerous message

Once again I’m seeing red at the headlines around the Carer of the Year Awards. Always putting others first is not a good long term strategy. I know women who’ve died young because they were too busy caring to get their health needs met, let alone anything else. If you’re a carer for life, as I am, you have to look after your physical, mental and emotional health in order to keep caring without burnout. But these constant media messages about selflessness put huge pressure on carers not to look for help, and relieve society of the guilt they feel about not offering it — with some exceptions, of course.

As I am totally overwhelmed right now, I am going to recycle another old article, that says a bit more on the same subject, with apologies to the organisers and to those who do enjoy these awards.

When you become a carer, everything changes. Not just your own life, but society’s expectations too. No matter what you were like before, you are immediately obliged to take on saintly qualities and become endlessly patient, loving, energetic, unselfish, undemanding and uncomplaining, with a beatific smile permanently plastered on your face. Don’t believe me? Look at the Carer of the Year Awards. Now obviously I have huge admiration for the winners, they manage the most challenging situations and care for the longest number of years. But what do these awards say to the rest of us?

Keep your head down, keep caring and if things get really tough, you might get a day out at an awards ceremony in 30 years time.

Don’t complain, don’t look for help, there’s many people who are much more deserving than you.

You made it through the day? Congratulations on “surviving”.

Having special children makes a family special (well actually it’s made me cross, fat, sick and tired).

You think your life is difficult? Well guess what, it’s going to get harder and you will still be expected to keep going.

“I’ve learned that you can keep going long after you think you can’t.” Except when you actually can’t.

Yep, these are the messages that we hear all the time. They may help carers to keep going, they may find them inspiring. I understand that, I really do. But sometimes they just make me feel like screaming…

In the words of the song, Is That All There Is?

Is getting through another day all that we have to look forward to? Well I think that carers deserve better than that. I want more, both for me and for the other carers that I know. Somewhere out there are carers whose lives do not resemble those of the award winners. I want to hear about them.

Where are the stories of carers who have made a conventional success of their lives? 
Who have careers, who set up businesses? 
Who live in nice homes, enjoy hobbies and nights out, have great respite?
Whose children are settled in quality residential care, and who don’t feel guilty about it and are not ashamed to say so as they know that they’ve made the best decision for their family.
Who go on holidays, for goodness sake? 

Yep, maybe they needed a lot of help to achieve these things. So let’s celebrate the people who helped them. The services that make a difference. Let’s tell the world that many carers need that help, very very badly. They are not bad people. Everyone has a breaking point. Congratulations if you haven’t reached yours yet. But do not judge those who have. It could be you tomorrow.

 

 

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The meaning of minutes

I’m sure I read somewhere that the most powerful person at a meeting is the one who writes the minutes. Especially if the minutes are the only record of what was said and agreed.

That theory crossed my mind this week when I received a set of bland minutes from a meeting I attended on Monday night. They cover the facts given and the actions proposed, but say nothing about the words that were spoken. Are all minutes like this? It’s sad really, because the passion and inspiration from many of the speakers is completely absent: the minutes do not tell the full story.

I’m sure you won’t be surprised when I tell you that it was a disability rights meeting. Maybe a little surprised it involved an evening trip across the River Liffey. And perhaps amazed that instead of trying to find a sitter, I brought my two younger children with me. Including my disabled daughter B, even though I guessed that some might consider her vocal contributions disruptive. She should be heard and she should be seen, and I won’t let anything get in the way of reminding people that her needs are important too. Even when those needs may be a little different to those of the general disability population.

It was a small meeting: despite all the publicity, only about 30 people were present – out of the 300,000 or so who are affected by disability in Ireland. It just shows how tired and unsupported most disabled people and their carers feel.

But I really enjoyed it, because there was lots to inspire and digest:

A factual mini presentation about disability housing issues from David Girvan, and an impassioned plea for real change from Aisling McNiffe were among the parent and activist contributions that were preceded by some powerful words from the main speakers of the evening.

First up was Dr Tom Clonan, author, security analyst and busy advocate for his disabled son Eoghan. Here is just some of what he said:

The number of organisations agencies etc is mind numbing and little or no accountability. The situation is getting worse and worse. Disabled people becoming homeless is a policy. Levels of suffering completely unnecessary.

Meanwhile the Government has 44 media advisors. Choosing to ignore us. Because they can.

We need to make this a general election issue, and reach out to the able community.

We can make change against resistance: I know how to fight, and I will spend the next 25 years fighting.

👏👏👏👏

Graham Merrigan is a wheelchair user who lives an independent life and described his issues as mostly in relation to infrastructure, taxis, misuse of parking bays etc.

Local PBP Councillor Annette Mooney raised the issue of the still unratified UN Convention on the Rights of People with Disabilities (UNCRPD), and told the meeting her belief as to why it has not happened here, when almost every other country in the world has ratified:

They won’t ratify it because you’d be entitled to things. The main reason for not ratifying is money.

Why am I not surprised by this opinion?

Finally the gathering heard from Senator John Dolan, who is also CEO of the Disability Federation of Ireland.

On the Budget and ratification of the UNCRPD:

State signs the international treaty, and it’s like getting engaged. Ratification is the day of getting married. Ratifying means your starting a progress of implementation. It doesn’t have to be right straight away.

On community living for disabled people:

Some HSE staff are getting people out of institutions , others are putting them back in. You can protect an institution, it can be seen, while cutting a home help is unseen. We’re fighting to get people living in the community but as it stands the community is a very vulnerable place to be.

👏👏👏👏

If you only read the minutes, you’d think that attending this meeting was just a boring duty. It wasn’t. It was a pleasure and it was worth it, and I came away feeling less alone, and more understood. The minutes had no meaning for me. The quotes I’ve shared here give just a taste of what the meeting was really all about.

Note: I typed copious notes throughout the meeting and I hope I have reflected its spirit here. I should also mention that People Before Profit TD Richard Boyd Barrett was the MC for the evening.

 

My PR career as a carer

It’s true that events management was not my favourite part of public relations. But organising my disabled daughter’s activities beats the mind numbing bum wiping and form filling parts of being a carer any day.

During the winter it’s a no brainer: there’s her adult programme during the week, and regular weekend activities for her and her brother. I’m on auto pilot preparing for them.

It’s different during the summer months: her club organises a summer project but there is still a lot of event management required from me, as the only parent of a young adult who needs a wheelchair.

So I found myself sitting at the kitchen table on Wednesday morning organising our first trip on the urban train (DART) to an out of town seaside resort (Bray) to visit the Sea Life aquarium with our friends from the Rainbow Junior Arch Club.

9am – I checked all the following:
Disabled parking at or near the station
Working lifts at both stations
How to wheel the chair from the platform onto the train
Accessibility of the aquarium
Availability of a disabled toilet (no changing places toilets, obviously as they are still a novelty in Ireland)

9.30 am – Make a packed lunch for myself and B – in case we couldn’t find anywhere that served mashed food – though I have mashed chips in an emergency. Pack buggy with every conceivable item we might need. No point in taking the wheelchair because (a) the weather, (b) no portable tray (c) not enough storage and (d) only the buggy reclines so I can fix her up after she uses the toilet (I had to lift her on and off, and my back survived this time, but MY DAUGHTER AND OTHERS NEEDS MORE CHANGING PLACES TOILETS).

10 am – Half an hour to help my daughter use the toilet (including hoisting), put on a fresh nappy, get her into her outdoor clothes, and wheel her outside and up the ramp into the car. Phew!

But it was worth it.

Collage of B, Day trip to Bray, Sea Life,

We both loved the DART – I’d never done the scenic journey from Clontarf to Bray along the coast, and I felt like I was on holiday with friends: B loved it too, and was so enthusiastically loud and we got so many glares that I resorted to getting out the Jaffa cakes to quieten things down a bit!

Sea Life kept up occupied for about an hour – the aisles are very narrow and there were occasional buggy traffic jams, but our visit also coincided with shark feeding time, and that meant we had the place for ourselves for a while, which suited my daughter better as she could see more (some exhibits do not have glass walls and those were no good for her).

Coffee and a walk followed, and then a very happy trip home.

The previous weekend involved even more planning, but at least we went to familiar places: a Saturday walk into town and a visit to a new cafe, that could become a favourite as it offered cheesecake, a roomy disabled toilet and music – but not too loud.

Sunday involved two trips, complicated by the matches at the nearby sports stadium, that involved me parking in the middle of the road to move the bins that blocked our parking space each time we came home so my daughter could use the toilet.

In the morning we went for our second run with Rabbits and Runners, and B loved it even more than the first time, if that’s possible!

The afternoon saw us dodge the showers at the Hotter than July World Music Event – and I’m sure you’ve noticed by now how much we both like live music events, even better when they’re free.

There’s a bank holiday weekend in Ireland starting tomorrow, so the event planning for my daughter has begun already.

So you could say I didn’t give up my career as a PR when I became a full time carer. I still use the same skills, but for the most important client I’ve ever had: my beautiful daughter.

And that’s my reason to be cheerful for this week. Head over to Lakes Single Mum for more.

 

We’ll always have Paris

Except some of us won’t. Not everyone gets to go abroad, and I often get a little pang for the life I might have had at this time of year. I’ve never been to Paris, or many of the other places on my travel wish list: my last proper foreign holiday was in May 1996.

Me, Bellagio, May 1996
Bellagio, Italy, May 1996

I did have plans to buy some kind of disability friendly camper van or caravan, and travel with my disabled daughter, but that now seems unrealistic. The world of transport is moving so fast: I can’t justify the investment, when petrol and diesel vehicles could be banned in a few years time.

And there’s another thing: I’ve read a few stories about non verbal children and adults who’ve died of starvation, because their sole carer died and they were unable to raise the alarm. If my daughter’s future is living with me, just me, then she needs a safety system, she needs a stable home, a year round day programme and regular home help visits, to ensure that she will be found and cared for if anything happens to me.

Obviously this could change if real respite options that my daughter liked were made available. But I’m not holding my breath: I know the State has other priorities.

So instead I’m going to count my blessings and find some reasons to be cheerful:

Life in general

Life has got a little easier in the past six months, as things have improved for one of my other children.

Building work

It’s gone on a lot longer than expected, but it’s almost finished now, and hopefully our damp problems and other worries will be consigned to history.

Plumbing

Yes, everything went wrong at once, and our ancient and complicated plumbing system packed up too. It took four visits by the poor guy who thought that all he’d have to do was service the boiler, but it’s finally working again.

The Bargain Bin

The kind of luck I don’t get very often: spotting a new bargain bin in Penney’s (Primark in the UK) with T shirts on sale for a euro, and in the right sizes for B and I. We got first dibs and I found 3 in colours and sizes to suit. By the time I’d tried them on, they were queuing to rifle through my leftovers.

Bargain Baby Bottle Brushes

Maybe I’m showing my age, but I don’t believe a baby bottle brush should cost €10?

I tried all the usual places and that was the standard price, with nothing cheaper than €6 😶

So I held out until I had time to pop into Dealz and found one on sale there for €1.50.

Result.

And in case you’re wondering, I use the brush to clean reusable water bottles and coffee cups, and the old one had that disgusting looking black stuff at the base of the bristles…

The fridge is recovering from the heatwave

Never buy a Samsung American Fridge. I did, just for the extra storage. I believed the hype and the description, but I was so wrong. It leaks water. The frost free freezer has to be regularly defrosted, and the electronic controls cannot be controlled by the user: it is a fridge with a mind of its own. And in the hot weather, it was minded to warm up, so I’ve had to buy food on a daily basis and ensure that everything got eaten quickly too. Luckily, as the temperature outside drops, so does the temperature inside the fridge. I see less trips to Tesco in my future. Hooray!

Hope you have lots of reasons to be cheerful this week too. Head over to Mummy from the Heart for more.

R2BC at Mummy from the Heart

Happiness is… being able to use a toilet when you need one

It was just a little accident.

Not the nicest way for my disabled daughter B to wake, but it was soon cleaned up, and she was full of smiles once again.

B, happy, 2017, Smiley, B

Until she wasn’t.

She began sticking her tongue out at me, it’s one of the ways she communicates her needs. But it can mean several different things. So I offered a drink first. But that wasn’t what she wanted.

She still needed to go. So I organised another trip into the toilet, with the help of her hoist.

If you’ve been reading about my daughter for a while, you’ll know that I’ve been toilet training her for nearly 17 years. Surely a world record?

But it’s not always easy. She’s non verbal so it can be hard to know when she needs to go. A regular toileting schedule helps, but enabling her to get to the toilet when she needs to requires a lot of things to go absolutely right. She has very weak muscles, so anything can upset her digestive system, from less exercise, to different food, to antibiotics or other medicines.

So she does have accidents, and they upset her, they’re bad for her skin, embarrassing, unpleasant and undignified to clean up.

And that’s at home. Things are ten times worse when we’re out and about. Because even if I thought it was okay, I cannot put my daughter on a dirty toilet floor to change her nappy: I wouldn’t be able to safely lift her back up again as my back is destroyed and she is an adult weight.

There is a solution: Changing Places Toilets. I’ve mentioned them before, with good reason, because they would improve the lives of children and adults with severe disabilities in so many ways – and the backs of their carers.

All our trips out, bar one, are cut short due to lack of these toilets, we can’t go far from home, and we can’t stay out for more than about 4 hours. Every trip has to be planned carefully so she gets to use the toilet just before we leave, and again as soon as we return. It’s very restrictive.

Smiley, disabled toilet, changing place
The only changing place we use – it’s in the school where the Rainbow Junior Arch Club is held

It could be why some people who have been involved in her life don’t see the point of toilet training her at all.

Some people seem to think it’s easier to let her soil herself and change her when they can: I’m pretty sure it happened in respite and may have been why she stopped enjoying it.

Did I actually make her future life worse by toilet training her?

People mean well, but if and when she lives apart from me – whether in residential or the community – I’m afraid the succession of minimum wage care workers are likely to do the easy thing, the thing they know how to do, the thing they do for others like her. They will change her at regular intervals, and after a while she will surely get used to it, as people get used to most things.

But it makes me so sad for her that it will probably be this way once I’m gone.

Unless there are some fundamental changes made to the lives of people with severe and profound intellectual and physical disabilities.

And that can begin with providing Changing Places Toilets as a standard in every new development.

They have the potential to change lives, change attitudes, it will give those people who need them the chance to take part in their local communities, to travel further afield without always worrying about the next toilet stop. It will make severely disabled people more visible, improve acceptance, reduce fear of the unknown.

And it just might give my daughter and others like her the dignity of being able to use a toilet, instead of being left to go in a nappy.

________________________________

Today is Changing Places Awareness Day: it raises awareness of the need for special disabled toilets that also include hoists and changing benches – the only kind that my daughter can easily use. They are not especially big or complicated – but they can make a very big difference to the lives of those with severe physical disabilities.

How you can support this campaign:

This link explains more about Changing Places Awareness Day:

http://changing-places.org/news/changing_places_awareness_day_2017!_.aspx

If you have a disability or care for someone who cannot complete this themselves, please would you do this survey and explain the importance of changing places.

https://docs.google.com/forms/d/e/1FAIpQLSeavpUMDHbsS6woZmYn-HQTunczLLGytVD6MJ-Xaj1GkWnqoQ/viewform

Finally I’ve written before about a friend’s campaign to get a changing place installed in a new major cinema development. You can support her petition here:

https://www.change.org/p/tim-richards-vuemail-com-access-to-a-fully-accessible-toilet-in-vue-cinema?recruiter=10336651&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_petition&utm_term=mob-xs-no_src-no_msg

More about Changing Places in Ireland can be found here:

http://www.inclusionireland.ie/content/page/changing-places-locations-ireland

There are also a Facebook page and group:

https://www.facebook.com/ChangingPlacesIreland/?fref=ts

https://www.facebook.com/groups/ChangingPlacesIreland/

 

In the real world, disabled children and their carers are at breaking point

Reprinted with permission from one of my friends over on the Spectrum Facebook page.

Just off phone to twins’ social worker.

I’ve told her if more help does not come I’m going public with our story.

I  also said if they refuse more help I want an actual sit down with all involved including government ministers and hse bodies with my children’s services and professionals and if its refused I will go through the media to request that sit down again and I will be like a pit bull until I get it.

I’m done being nice and I’m done being pushed around. 

We are so severely sleep deprived we can’t even be parents to our children any more, we are like auto pilot robots who are starting to malfunction and no child deserves that.

Spectrum

In a house of 5 children, 4 children with needs, 2 do not sleep, 2 are on serious meds, 3 are in nappies, 3 have no independent skills, 3 are non verbal, 2 have pica, one is hypoglycemic, one has severe social anxiety, 2 are aggressive, 2 smear shit, 2 self harm, 4 suffer meltdowns, 3 have no stranger danger and no awareness of any danger around them, 3 can’t dress them selves, 3 are extremely noise sensitive, 3 can not be in each others company for safety reasons, 3 need one to one supervision at all times.

I could go on but I’m depressing myself.

Another family that needs help urgently, but is being ignored. Right now it seems the only way to get help is to bare your circumstances in public and beg for help, and no-one likes doing that. You lose your privacy, you leave yourself and your family open to judgement, and sometimes your children still don’t get what they need.

So please can I ask again that disabled people, carers, siblings, friends and the organisations that represent us, work together to help families like this one, and all the other people I know who need help now.

 

“See me, hear me, support me and value me.” A carer speaks

Note: I loved the speech by family carer and co chair of the Special Needs Parent’s Association, Lorraine Dempsey, at the launch of Carer’s Week, so I typed it up, and she gave permission for me to share it here.

“I have a daughter who is nearly 14 and has multiple disabilities and she has brought me on a unique journey. I wouldn’t have always identified myself as being a carer. Carers week was not on my agenda, and it was only recently that I looked at the role of carers and asked do I fit with the title carer? Is that who I am?

I began to identify as a carer when I recognised that my role far outweighs that of a typical parent. It was also the loss of other roles that I once had in my life: like having to leave the nursing profession that I’d worked so hard to join. I was now providing nursing care for my own child, but without the same level of recognition, and certainly with no money for my efforts.

So what needs does my daughter have that go above and beyond?

When she was a baby she had to be fed, watered changed, caressed, cuddled and comforted, but she also had to be had suctioning and tubefed.

I was handed a tiny 5 lb baby and told: ‘There you are, go home.’

I kept my nursing hat on and for me that was my protection against the all the pain we were facing with a baby that was being sent home to die.

That was the beginning of my journey as a parent, and all the while I had this beautiful other twin who expecting me to be mummy, and nothing other than mummy.

As the years went on, I still didn’t see myself as a carer, things improved slightly, and the medical equipment left the house piece by piece. But the mobility equipment came in, getting bigger and larger, and less child friendly as the years went by. The bright colours were dropped and everything became black plastic.

My daughter is now entering her teens, and I have a one year old who is in nappies, but I also have a 13 year old in nappies, who still requires support to be fed, who requires support to enjoy her life. And she does. She rules the roost at home, and she really does enjoy life.

I now identify with the 11% of women between 40 and 55 who provide unpaid care.

I also identify with the 2/3 carers who don’t work full time. I left a well paid job as a nurse, I left my own income and my own identity and I’m lucky that I have a partner who can support both of us, but that means the state doesn’t support us, we’ve had to struggle to find everything for our daughter, and I want the best for her, and the best sometimes means basic equipment like hoists, ramps and toileting facilities.

Being a carer can be made a whole lot easier by simple things, by providing services in the community so we can go out and enjoy things in the community. We’ve all heard about care being provided in the community instead of residential settings, but the community isn’t ready for that and we need to fight for the community to be open. I want my daughter to live with us in the community, but I need support for that – I am never going to drop my caring role until I die or her life is extinguished early, and all I’m asking is to be heard, to be seen, to be respected, to be provided with some level of dignity for the role that I do as a family carer, for my children to have dignity to be supported as siblings of someone who needs life long care.

My baby who is learning to walk, talk and climb has been watching me and I have a video of her spoon feeding her nearly 14 year old sister. That’s normal for her. But I don’t want her as an adult to feel any imposition that she has to look after her sister, I want to know that the State will support her to be just her sister.

Carers Week enables us to shine a light on carers’ roles, our needs, our aspirations, it gives us recognition for the selfless role we have on top of our roles as mothers and fathers, wives and husbands, brothers and sisters, sons and daughters.

My name is Lorraine Dempsey, I’ve been a carer for just over 13 years: see me, hear me, support me and value me.”

Her speech is here from 37 minutes.

 

On celebrating the saints and scroungers during Carers Week

Because that’s how the public sees us.

Every story about the selfless middle aged woman* caring for elderly parents and disabled children feeds into the saint narrative, which reaches its peak during Carers Week and the annual carers’ awards. And while I’m very happy for those who win and enjoy the accolade, there are carers like me who find the whole thing a bit patronising: it’s like society feels that all we need to keep going is an annual pat on the head.

No mention of real support, pay for the work we do, pension arrangements for when we are too old to care, or anything that really matters.

The rest of the year we’re painted as scroungers.

Of course keyboard warriors like me were blamed when Leo Varadkar (likely to be the next Irish PM) had to row back on his rhetoric about being a leader for people who get up early in the morning. He had to add in carers, and others. But the genie was already out of the bottle, as the above article shows, giving permission to portray carers as whingy costly parasites, so long as it’s not Carers Week.

I write about my life as a carer, and luckily the words pour out of me head like a torrent: I don’t have to sit down and wonder what to write, instead I find myself jotting down thoughts whenever I have a spare few seconds, often when I’m doing something else as well!

But it is hard to find the time or energy to write when you’re a carer, so there’s very few of us who do, but I’d like to introduce you to two friends of mine. Like me, neither will be attending of the events for carers during Carer’s Week. Because they can’t.

This week is Carer’s Week. There will be a wide variety of events across Ireland for carers to attend – lunches, coffee mornings, walks, pamper events with manicures and massages, nights out with music and dancing – all to celebrate and treat the much deserving carers. But, how many of the nation’s carers can attend? I can’t. I’m housebound while my son is bedridden. I have no one to relieve me so I can go to any of those events.I have no one to relieve me so I can go to any of those events.

Read more at Transitioning Angels

We’re back to no sleep. But with Luca I think he has constipation issues again, he’s back on movicol.

Emmy was supposed to go for a blood test today but no one up to the hour drive there and hour drive home and we’re still a bit under weather so I cancelled the appointment, all I seem to do lately is cancel appointment after appointment

We’ve reached the stage where we get no energy boost at all, just permanemt tiredness and feeling flat, the weather isn’t helping. 

I bought cbd capsules for myself during the week, they should be here today, can’t wait to get started as I’m in a shit heap, constant fibro flare and pains in stomoch from IBS.

Read more at the Spectrum Facebook Page.

Both write about the harsh realities of extreme caring in a world that doesn’t really want to know, doesn’t want to think about it, doesn’t want to imagine that it could happen to them too. Even though it could.

 

*The peak age for caring amongst women was 45–49, with 11.2% of women in this age group providing unpaid care, amounting to 572,680 hours of care every week, according to the 2011 census.