A Rant about Carers Week #RealCarersWeek

Many people say that becoming a carer has made them a better person: I’m sure that can be true, as I saw it within my own extended family.

But I don’t think it’s made me a better person. Instead it’s highlighted my flaws: my lack of patience and tolerance, my self centredness, my incompetence in the face of overwhelming domestic duties and repetitive paperwork. Sometimes I strive to overcome these failings. At other times I rage against the unfairness of it all. I rage at being forced to live a confined life of fear and anxiety. My skills getting rusty, my brain less sharp, my mental health deteriorating.

Sure, I do my best. I do all that self care stuff: I exercise, as I’m sure you’ve noticed! I do social media – often the only opportunity I have to use my communication skills, and writing a successful blog post – or even just a popular tweet – gives me a boost that I badly need. I practice being grateful, I make myself do things that are challenging. I keep going. But it’s not always enough.

It’s not just me either.

There was a Carers Week competition to win a break at a luxury hotel in rural Ireland. Wonderful, you might say. Well deserved (especially if my friend @autieland wins, and I hope she does because she really deserves it as you can read here) but it also rubbed salt into the wounds of those of us who cannot get away from our caring duties, because those we care for have no respite. And even those families that have respite, may not be able to get it when they want or need it.

You see it’s different for everyone: some carers manage to lead relatively normal lives – and I used to be one of them – holding down jobs, perhaps enjoying holidays, a busy social life. Even then they may be facing challenges they don’t talk about. But many of the family carers I know live lives so difficult that the rest of us sometimes wonder how they keep going at all (no choice is often the answer to that question), perhaps due to the number of disabled dependents they care for or the severity of their difficulties; perhaps due to totally inadequate housing, no support, poor health, chronic pain, being housebound for months or years at a time, lack of money, lack of interest, feeling ignored, unappreciated and left behind by the rest of the world. It’s a recipe for despair.

The manicures and other little treats being offered to carers are thoughtful attempts to mark Carers Week, and undoubtedly appreciated by many. But those carers stuck deep in the trenches may not be able to leave their duties to enjoy a little pampering, or they may feel under so much pressure that doing something for themselves becomes just another item on the ‘to do’ list. And a set of pretty painted nails would not last long with the amount of hand washing that many of us have to do each day for hygiene reasons. It’s just not worth it.

There are no easy answers: my disabled daughter has been given a ticket to see Taylor Swift on Saturday, with support and some friends. A great break for me, you might think. Not quite. You see I won’t really be able to relax, as I will be dropping and collecting her, I need to be on standby in case she wants to come home early, and when I do bring her home there is a long bedtime routine that includes hoisting her onto the toilet and her night time stretching exercises that help her to sleep. We are both going to be exhausted! But we’re going to give it a try anyway. Oh and I forgot to mention I will still have one person to care for while she’s out….

What can I do except keep trying to raise awareness? This week I’m joining @Carer49 and tweeting using the hashtag #RealCarersWeek to highlight issues and possible solutions. I hope someone will read them, someone who can take action to improve our lives and the lives of our dependents. It’s hard to hope though, when UK Councils chose Carer’s Week to announce further cuts to vital care services. Does anyone else think that old, sick and disabled people and their carers are actually held in contempt by many people in today’s world? Yes? Not just me then.

As you can see, becoming a carer has not made me a better person, but I feel better after that little rant, and I promise my normal cheerful service will be resumed soon..

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The day we walked to Bloom to test out a toilet

The Sanctuary Nurture Garden
The Sanctuary Nurture Garden

It was a sunny bank holiday Monday, we were planning to go to Ireland’s biggest flower, family and food festival, and I hate traffic jams. But we had to go, because I’ve been publicly campaigning for Bloom – as it’s called – to hire a Mobiloo, a mobile changing places toilet for children and adults like my disabled daughter B.

The solution? We walked. Obviously not all the way, but I left my van outside the Park where Bloom is held, and walked the last 1.2 km to the entrance, passing many cars on the way 😀.

After we’d paid in, we were handed a leaflet for Mobiloo, surely a good sign?

But we hadn’t traipsed all this way JUST to use a loo, so we had a look around first.

B associates outings with food, so we headed straight for the Food Village, and she really impressed me as she tried jam on bread, ham and wild Irish tuna. (She even helped me to finish a fancy hot dog at lunchtime.)

Then we both danced to strains of the Kings of Leon, sheltering from the sun under the Food Matters awning while drinking Innocent smoothies.

She loved the buzz in the Food Village, and I swear she was absorbing chocolate and sugar through her pores.

The Muffin Man

By contrast the atmosphere in the display gardens was almost reverential, and since B couldn’t see much apart from other people’s backs, the only one that interested her was the Mamma Mia Garden, because there was music and activity, of course!

Mamma Mia Garden

We also had to stop by the entertainment stage, and caught some fabulous performances by young stars from the Leah Moran Stage School, sustained by coffee and carrot cake from The Coffee Shack , which did not disappoint – as usual.

Leah Moran Stage School

Finally it was toilet time, and we searched for the Mobiloo: and it was such a welcome sight when we found it. Michael and Graham from the Mobiloo Ireland team were so friendly, and the facility is small, neat and totally amazing: a toilet with a changing bed and a ceiling hoist – the vital toileting facilities that are not provided by a standard disabled toilet (just bring your own sling): It’s very simple, but its availability will transform lives, and I look forward to seeing it at other events soon.

Mobiloo at Bloom

Note: I hope this doesn’t read like a review, I wasn’t asked or paid to write it, and I paid to get into Bloom. I wrote it because I believe in the importance of spreading the word about changing places toilets, including Mobiloo, and how they can improve inclusion for disabled children and adults.

 

Reasons to be Cheerful about Undiagnosed Children’s Day #UCDsuperhero

My daughter is undiagnosed. She is no longer a child in age, but I still feel a bond with all those families who are wondering why their child is different and desperately searching for answers. The current thinking among some disability communities is that you should just look at your own child and ignore labels, but that presupposes that every parent knows what to do when faced with a barrage of unexpected medical, physical, intellectual, behavioural, and sensory differences. Most parents struggle at times with their typical children, and few would criticise them for consulting parenting books and media experts for help. So it’s surely understandable that when you have a disabled child, you want answers, you want a diagnosis, you want a roadmap, you want tailored advice, and you want to find your parenting tribe. And today is Undiagnosed Children’s Day to raise awareness of the additional unique challenges of raising a child with no diagnosis.

I’m still searching for a diagnosis and I enrolled my daughter  in the DDD project a few years ago. No answers yet. But it’s not something that really worries me at this stage. I’ve learned that you cannot predict the future, no matter how much information you have, or how hard you try to control it. I’ve also learned that no manual or advice will ever be guaranteed to help your child, even when they do have a diagnosis. I know how hard it is, but it will be easier if you can find a way to let go of your expectations and go with the flow instead. My daughter is proof that life goes on and can be wonderful too.

While my daughter has severe to profound physical and intellectual difficulties, she is healthy and happy once her needs are met. She’s a joy to be around, and has found her place among a group of more able young adults in a day programme nearby. She has a busy life in the community at weekends.

Thanks to the much maligned Facebook, I have a big network of other parents living similar lives to myself, some with sons and daughters a little like mine. We face similar challenges and can support and advise each other. There is an organisation for families living with an undiagnosed child called SWAN UK (open to families in Ireland too) and it also provides help, resources, support and a community. So you could say that we’ve both found our tribe too.

21 years after that tiny 875 gram preemie baby took her first breath, she is very much alive and loving life and spreading happiness all round her, and despite the lack of a diagnosis, I am now confident that I can meet her needs, once she and I get enough support. So many of my worries about her have been melted away by her beautiful smiles. She really is a #UCDsuperhero and that’s my reason to be cheerful for this week.

Undiagnosed Children's Day 2018
More reasons to be cheerful over at Lakes Single Mum.

 

 

 

Reasons to be cheerful 20.4.18

I almost stopped writing these posts: I’ve been doing them for about 9 years in different places, and I thought you might be bored with them at this stage. Especially as there is definitely repetition – after all, my life is not exactly exciting any more!  Yet every post still seems to get a good reaction, so here we go again for another week with some daily tidbits…

Friday: B may be grown up, but it’s important to get her out of the wheelchair every day. So floor time is still part of the daily routine. And on Friday I remembered to put her on her tummy, which helps with her head control: I haven’t done it in a long time, and luckily she enjoyed it.

Saturday: Chatting with other parents in the lovely garden of the Carmichael Centre in Dublin while our teenage sons and daughters attend a therapeutic drama session. Best of all, B was happy to join in.

Sunday: Doing the 10K Great Ireland Run in Dublin’s Phoenix Park with my pal Lisa (and clocking up 31,400 steps over the day). It was wet, cold, windy and wonderful!!! A 3 1/2 hour escape from all my worries and I look 10 years younger. Even in a bin liner 😂.

Me collage Candi 17.18
Left hand photo taken at Christmas when I hit rock bottom with stress and exhaustion

On a more serious note, it shows the value of respite, and how difficult life can be without it.

Monday: I discovered a new season of my current favourite TV series: Marvel’s Agents of S.H.I.E.L.D. Please don’t judge me, it’s a little bit of escapism for an hour after B is in bed – and I suspect I may view Coulson as a surrogate father figure 😂

Tuesday: Zumba 💙

Wednesday: The arrival of sunshine meant I got some work done in the garden.

Thursday: I rewarded myself – and the rest of the family – with cake following a painful physiotherapy session. I have to get my shoulder problem fixed as it’s preventing me from doing some of B’s essential daily stretching exercises.

Friday: A morning meeting that promised much. Now to see if it delivers!

Head over to Lakes Single Mum for more reasons to be cheerful.

 

What’s It All For?

Everything is a struggle again. All the juggling, dealing with the on going stress of the problems I’m not writing about on here, trying to put my positive face on in public. The weeks slide by without progress or resolution. I feel my family has been abandoned, and I know so well that I’m not the only one.

And if I can’t write about the only topic that consumes my thoughts, how can I write at all?

I just haven’t got the heart to write yet another cheery post about our Easter outings. I planned to, I really did. I even took the photos and saved them in a little folder on my desktop. All ready to go. I might even give you a sneak peak later.

I was brought up to believe that I could follow my dreams, achieve whatever I wanted if I was determined enough, and of course those beliefs were backed up with the support of a cradle to grave welfare state: you paid into it when you were working, and used the services when you needed them. You earned enough to be able to buy a house, you could get a mortgage because your job was permanent. It may have been pensionable too. The security this gave people of my generation is impossible to overstate. But even for us, it’s starting to falling apart, just as many of us need the services we thought we were funding through our taxes when we were younger.

Perhaps it’s better that my children have learned the hard way that life is mean, life is tough, and you have to make your own luck, that the world is becoming a place where one needy group fights another for scarce resources and publicity. Except that resources are not scarce at all. The world is more wealthy than it’s ever been. But those who have the wealth are reluctant to share it with others.

I wish I could accept my life with grace, as so many others do who are dealing with far more difficult situations, and accept that it may not change, because that’s the way the future looks. But I was always greedy, I always wanted more out of life. More and then MORE again 😀. But it feels as though I’m getting less and less, that I’m trapped in a cage, partly of my own making. Yet people still ask me where I’m going on my holidays, even though I haven’t had a foreign holiday since 1996 (not a typo). People still ask me about respite, even though my disabled daughter has had only a handful of days over the years and none since 2015. My other qualifying child has never had respite. People still ask me how work is going, even though I lost the job I loved during the Economic Crash in 2008. People assume I get lots of support, yet the last time I felt that someone was really sharing the load was summer 2011 during a weekend at my Dad’s house before he succumbed to his final illness. Life is about to get trickier too, as my eldest and only non-disabled child begins a new job away in two weeks, though she may be home at weekends.

So I am finding everything very difficult once again, but I didn’t want this blog to become a moanfest. There are too many mixed messages on mental health for me to feel comfortable sharing my worries all the time:

Avoid negativity, they say: and I don’t want you to feel you have to avoid my blog.

Cut negative people out of your life, they say: yet I would hate for my friends to feel they had to do that to me.

Tell someone your problems, they say: yet even counsellors need counselling to cope with what they hear from clients, so who would want to burden their friends?

I heard a desperate woman on the radio in January who was facing repossession of her home and she told no one of her plight, “because everyone has their problems”.

Yet we’re told it’s good to talk…

Some people manage to talk about their problems in a way that makes you feel sympathetic, makes you feel privileged that they chose you as a confidante. Some don’t: I’ve called it emotional dumping, when someone pours out all their problems to you, and they feel better afterwards, but leave you feeling stressed and exhausted. Though airing my problems usually makes me feel worse. Except on here, for reasons I don’t understand.

The Government tells us to eat healthily, take exercise, switch off our phones etc as though our mental health is entirely within our control, and basically our responsibility. In fact many people struggle with mental health issues as a result of Government policy. Medication and counselling are pushed on people, yet they just deal with the symptoms, not the cause, which is often the lack of state services and support!

All I can do is keep going, doing lots of self care, even when I don’t feel like it, even when it feels like just one more thing on the desperately long ‘to do’ list. Even when I wonder why I am bothering at all.

So what’s it all for? I’m lucky that my disabled daughter’s zest for life, and love for those who love her give me a reasons to drag my weary ass out of bed every day. Because I am tired, physically, mentally and emotionally. But you’d keep going too, wouldn’t you, for this?

Bronwen in Farmleigh 2018

 

 

After I die

After I die, what will happen to my disabled daughter B?

B, disabiity, after i die

Yes, there are lots of people who love her and appreciate her, including her brother and sister, but who will take care of her? I don’t want her siblings to take on that responsibility, so who will make sure that she keeps smiling? Who will do all the things that I do?

Will she feel abandoned by the one person who was always there for her?

Can you explain death to someone who is severely disabled? Or will she just sink into sadness until I am completely forgotten?

What sort of life will she have? Will she be able to live with friends? Or people that she finds entertaining? Will anyone even consider that? Or will she be expected to be thankful for what she is given… After all, God forbid she should be entitled to anything. No worse insult these days it seems.

Will anyone have the patience to help her to feed herself? To clean up the mess afterwards? Or will they just feed her quickly, because they are under pressure to move on to the next person.

Will she be an embarrassment? She can be very loud, especially when she is laughing with delight. Perhaps her carers will think she is too noisy, and keep her away from other people. Take her to out of the way places where she won’t bother anyone. She’ll be quieter then too, and maybe they will think that she doesn’t enjoy outings, and stop them completely. It would be easier, after all.

Will anyone bother with her toilet training? Especially as she will always need nappies. Perhaps she should just ‘go’ in them. That would probably save time and money. Never mind her dignity and all that. Never mind her pride when she uses the toilet correctly. And then there’s health and safety. The equipment I use is old and needs replacing, but it seems that there are no companies that provide toileting equipment for floppy adults…

Will someone make sure that she is entertained: give her something to hold, something to watch. Or will she just be left to sit. Then she’ll be quiet, she’ll retreat into herself, she’ll be easy to manage.

Will she still get chocolate cake? Or will someone decide that she needs a healthy diet. Even though she adores sweet things.

Will people still talk to her, when her replies will not be in words?

Will she have loving caregivers? Or a succession of poorly paid and overworked helpers who do not have any time and energy to give to her.

Perhaps I am just being arrogant and unfair if I think that no-one else would look after her like I do – and I’m very far from perfect. I’ve seen comments like that about mothers like me. Perhaps she will adapt to whatever life throws at her, and use her winning smile to get what she needs. Perhaps I am wrong.

But you know what? I don’t want to risk being right. I’m her Mum, I don’t believe that I can be replaced. So I can’t die, I just can’t. At least not for a very long time.

(An old post updated)

 

Are you shocked at the idea of sleeping in the kitchen?

This is a post about middle class privilege, I accept that. But life is not always easy even when you’re not homeless, or desperately trying to find somewhere safe, secure and affordable in the private rented sector.

I know how lucky I am, but I do find life difficult, and it’s only going to get harder as I hurtle towards retirement age. Oh wait, I’m a lone parent carer, so there will be no retirement, and no State pension either.

My current home is no longer manageable, and I got very excited last summer when I saw that a development of new bungalows was being built within commuting distance of my disabled daughter’s adult service. I got to see a sneak preview of how the interiors are likely to look yesterday, and unlike my current home, everything will be flat, spacious, open plan with wide doors, warm, secure, easy to clean and maintain. I also got told that all the bungalows in the development have been appropriated by the local council for social and affordable housing, so I can’t buy one. Do you know how often new reasonably affordable bungalows are built in the Dublin area? Almost never. I totally understand that the people on the local housing list are in greater need than we are, but does the local council need ALL the bungalows? Because if something doesn’t change I’m going to burnout eventually and then the State WILL be left with a hefty annual bill for my children’s care. But does anyone join the dots? It seems not.

To rub salt in the wound, there’s an article doing the rounds today about the 13 most depressing rental properties in Dublin that highlights the unacceptability of sleeping on a sofa bed in the kitchen.

Because that’s what I have to do now. To make sure I wake up and get up to meet my daughter’s needs during the night. And I was very grateful to the friend from whom I bought the sofa bed too.

But it’s not really sustainable long term. Or perhaps you think it is?

After all, I’m only a carer.

new home, disability
B was very taken with the house we saw yesterday that illustrated what the bungalows would be like

 

 

The Princess Party

On Friday afternoon it was just another ordinary school classroom. Twenty four hours later, it had been transformed into a magical grotto full of light and colour, music and balloons, a candy cart and the sweet smell of cake. A wonderland fit for a princess. My princess. It was finally time to celebrate her 21st birthday.

And celebrate we did. With plenty of music and dancing, a gorgeous cake, family and lots of lots of friends, old and new. There wasn’t even time to take many photos: we were all too busy having fun.

(Most photos have other children in them so cannot be used here)

Why a school, you might be asking? Why not a swanky hotel? Well the school is home to the Rainbow Junior Arch Club, so it is familiar to B and has everything she needs, including a Changing Places Toilet. It meant all the children from the club could easily attend, as well as many former club members who are all grown up now, just like B. And finally because the school said yes to my request and I am very grateful to them for that.

As I wrote last week, with everything else going on at home, I could not have made this happen alone. Once again I asked for help, and once again my friends responded. I won’t name them on here, but they know who they are. And I hope they know how much I appreciate everything they did, from finding my daughter’s costume to making the invitations, to decorating the room and making sure everything ran like clockwork on the day, so I could spend the time  with B, making sure she had the time of her life….

It’s an afternoon I will never forget and the best reason to be cheerful I’ve had in a long long time.

R2BC at Mummy from the Heart 

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.

 

 

What I would tell that frightened new mum of a 26 week baby

I know you’re shocked and stunned, I know this seems completely unreal. I know you think this is a nightmare and you’re going to wake up and find that you’re still pregnant.

Preemie, #WorldPrematurityDay , 26 weeker,

You need to know. This is real.

That tiny scrap attached to tubes and monitors that ring and beep and flash. That’s your newborn baby. And yes she’s fighting for her life. But she’s going to make it.

Your life is going to change utterly, but in many ways it will be so much better, and you will change too. You will face challenges that you never expected and find strength that you never knew you had. I won’t lie to you: there will be battles ahead. With an indifferent state and an uncaring bureaucracy. But you will find help, you will find support, and most of all you will find friends, old friends who stay in your life and new friends in the same situation.

Her suffering in the hospital will end, because she will be stabilised and they will find a combination of medicines to treat her. Those bitter tears you cried with despair at not knowing how to help your daughter will be replaced with smiles of joy when she smiles at you every morning. You have the internet now, and there is lots of advice and support groups that can help. But you still might try desperate treatments. You might visit healers who live on remote mountain tops, travel abroad with a hired oxygen machine for specialist help, consult every type of therapist until you can’t take any more disappointment. You look at adults with cerebral palsy and wonder which one your daughter will resemble. Do not worry, she will look like herself.

Are you even wondering what you want for her on her 21st birthday, right now when all you want is for her to live?

To be happy?
To fulfil her potential?
To be kind and affectionate?
To be patient?
To be sociable?
To enjoy life?
To live the life of a young woman and enjoy music and dancing, shopping and friends?

She is and she will.

It’s going to be different, but it’s going to be okay.

B, all grown up, premature baby, #WorldPrematurityDay

(This is a revamped old post)