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..

Advertisements

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)

 

The fun begins… At least for us

The crisis cauldron boiled over on Friday and put the fires out, at least for now. So life has been a bit calmer here, which is a reason to be cheerful in itself, but there’s more. Last Saturday was St Patrick’s Day, as I’m sure you knew! But the significance for us is it means waving goodbye to hanging out in warm, dry snow free shopping centres, and hello to lots of festivals and other entertaining events that will pack out every weekend from now until November.

Of course we were promised the son of beast, and the weekend was indeed cold, and snow arrived on Sunday, putting a chilly damper on our plans.

But Saturday went well. Really well. My new secret parking place in Swords remained undiscovered, and we only had a ten minute walk to the meeting point for people taking part in the parade. This year, we were offered the chance to ride on the little train with the children from the Snowflakes Autism Support Group, and to my surprise there was a compartment at the rear of the train with a ramp for wheelchairs.

So B rode the train past cheering crowds doing her best princess impression, and enjoying every minute.

Princess B, St Patrick's Day, Swords Parade

And I thought how lucky and blessed we both are.

I was reminded of that thought on Wednesday at a focus group I attended about community living for people with severe/profound disabilities and complex medical needs (a horrible mouthful, I know).

I’ve often wondered, silently and out loud, why I never see other people like my daughter in public. I’m beginning to get some answers.

One reason is scarcity: there’s probably no more than a few thousand people in the whole country with a similar level of disability.

Then there’s the problem of incontinence and the lack of changing places toilets, that I *may* have mentioned before. For us that means we only leave the house for 3-4 hours at a time. For others, it means they barely leave the house at all.

Food can be a problem too: some people need a mashed or liquidised diet, which can be difficult to find (I have resorted to mashing up McDonalds chips in emergencies!), others are tube fed or peg fed, not very compatible with leaving the house.

Children and adults with complex medical problems such as intractable epilepsy may be at risk without their medication or specialised equipment, and may rarely venture far from home, school or day service.

Others display behaviour that doesn’t conform to social norms, which may mean they are not happy out, and are happier staying at home.

Sadly, the conclusion of the focus group was that community-based living may never be a practical option for some disabled adults, due to the huge costs involved of making everywhere suitable for everyone, the huge education requirement that everyone has a basic understanding and acceptance of every disability, and the dangers posed to those whose health is fragile.

So I counted my blessings once again, that my disabled daughter can enjoy life in the community. And it means I can too.

R2BC at Mummy from the Heart

 

Yesterday

All my troubles…
…Seemed a bit more manageable.

Yesterday was a good day for me, with several reasons to be cheerful:

Baking

A request was made for a homemade chocolate cake, and it was agreed that my reliable 5 minute recipe would do. The result? Three happy young adults, and a bit of stress free baking therapy for me.

Running

Entries opened for the Dublin Women’s 10 kilometre Mini Marathon yesterday, and I got my place, and it’s in the runner’s section at the front –  I earned an automatic qualification thanks to last year’s time. So no pressure, and I now have something to look forward to, as last year’s Mini Marathon was definitely one of the best days of 2017 for me. There’s something very special about being part of such a massive event that involves running around the streets of Dublin with 40,000 other women.

The start line, Dublin Womens Mini Marathon 2017
The start of the 2017 Mini Marathon

Parading

Due to the family crisis, I forgot all about St Patrick’s Day and the need to organise something fun for B to do, but yesterday the lovely people in Snowflakes Autism Support once again invited her (and me) to march with them in a local parade. You might remember these photos that show just how much she loves St Patrick’s Day, and taking part seems to be even better than watching…

Disability Rights

Yesterday was an historic day for the disability community in Ireland. After TEN LONG YEARS Dáil Éireann (the Irish Parliament) finally voted to ratify the UN Convention on the Rights of People with Disabilities. Every other EU country has already done this, and I am one of many people who protested with weary regularity to make this happen. I won’t be stopping now either, as this is just the start, next we have to ensure that the Government acts on the convention, and actually improves the lives of disabled people in Ireland. But it was a good start.

So yesterday showed what even one good day can do for my mood: 24 hours later and I can still feel the positive effects. You could call it a highover perhaps… Let’s hope it’s the first of many 😀

Written yesterday…Finished today…

R2BC at Mummy from the Heart

 

Our plastic straw story and some alternatives to try

Updated with information provided by the learning disabled charity hft.

This is what independence looks like for my severely disabled daughter B.

B, straw, independence

She can do very little for herself, but drinking is one thing she can do. Yet with the understandable concern about plastic pollution, this little bit of independence could be taken away from her. Which is upsetting?

But first I’d like to explain how we got to this point, about 18 years ago…

It was time to wean my daughter off bottles. I knew she was severely disabled, but at that stage I was all for everything being age appropriate, and I didn’t want her looking like a baby. I encouraged her to try all kinds of beakers and cups. Some she couldn’t lift at all, others she lifted but spilt the contents, none got near her mouth. It was a problem.

At the same time I was working with her to develop the building blocks of speech. I spent hours encouraging her to blow tissues off my hand, and more hours putting straws in her mouth to encourage her to suck through them. She couldn’t see the point of the tissue game, but when I inserted straws into cartons of fruit juice and sometimes squeezed the cartons gently, she got the reward of a little juice, and eventually she worked out how to do it herself.

She never developed intelligible speech, but at least she learned to drink independently. Important for her self esteem, giving her a bit of control, avoiding choking incidents, and giving her carer a break too!

Now plastic straws have become the emblem of the campaign to clean up our oceans. There’s pressure to ban them, and some organisations have already done so. I am not the only person to be concerned about this – disability groups in the UK are calling for a pause, and bloggers are too.

When I tweeted about this issue I was sent this article about alternatives that are already available, so in the interests of research and being ready for the change, I decided to try them out.

I immediately rejected Bamboo straws (not bendable), paper straws (guaranteed to get chewed and soggy) and glass straws (too dangerous if bitten), but we tried these three options found on amazon…

Straws

Metal straws

These are bent but not bendable and are long, so B doesn’t have to lift her drink if she doesn’t feel like trying. They fit her beaker and the spill proof lids she uses. They are cold and hard, but B seemed to cope with that okay, though she got fed up by lunchtime and I had to give her a plastic one. I will keep persisting with them, though I would worry about how hygienic they would be when used with a milk drink – despite the brush that is provided for cleaning.

Silicone Straws

Silicone straws are much fatter and softer than plastic straws. They don’t fit the spill proof lids she uses, so she needed close supervision while using them. She wasn’t keen on the feel of them and I was also concerned she would take too much liquid in one go and choke.

Biodegradable Straws

About four times as expensive as standard plastic straws, and they weren’t the long ones that B ideally needs. Apparently they start deteriorating on contact with liquid, but I have now been told that they are not toxic like plastic and will not cause problems even when reused. I also wondered which type of bin should these straw go into, and I now know it’s the food waste bin – so long as the waste is sent to an industrial composter.  B liked these straws anyway, so that’s a good start.

Conclusion

I don’t think the silicone straws will work for B. The steel straws are the correct length but clearly have a different mouth feel. I will encourage B to keep trying them, together with the biodegradable straws. But it would be great if the latter looked different to normal plastic straws, so we don’t get judged by other people who don’t understand. And can we have longer ones too please? Because sometimes that’s what she needs.

Finally, while I’m all for saving the world, it does feel like it’s all being put on the consumer to do this. Where in this campaign are the big companies and corporations, what are they doing? (Apart from producing expensive alternatives to plastic straws).

Skip the straw may be a great slogan, but please remember that some people will need budget priced alternatives …

 

My Sunday Photos

Hello! Just popping back in because my disabled daughter B and I had a lovely afternoon yesterday at the Rainbow Junior Arch Club Christmas Party. As many of you will know, the Arch Club is an inclusive social club for children with special needs, disabilities and autism, and we have been involved for the past 16 years – B still enjoys it even though she is no longer a child, and it works especially well for us as it has a fully equipped changing places toilet.

You may also know that we are looking for more families to join us, so if you know anyone in the Dublin area who may be interested please ask them to message the club via the Facebook page by clicking this link:

https://www.facebook.com/rainbowjuniorarchclub/

Rainbow Junior Arch Club, B, happy
With Lisa, our Club Co-ordinator
B and Santa
With the man of the moment!
B, Angel
Happy Christmas!!!