When life takes away lemons

I used to love lemons. They evoke long languid days in the Mediterranean sunshine, gin and tonic sipped at fancy events, lemon cakes and Thai curries. Now I no longer eat them due to reflux, and you would rarely find them in my fridge.

Lemons are just one of the items I no longer enjoy from the supermarket of life.

And until this week, there was a terrible uncertainty over what else was on the banned list. Now it is much clearer.

But back to fridges for a minute (and if you’re a long time reader you’ll know I bought a new fridge recently after the old one began leaking into the floor, the final straw after a long series of transgressions..)

The question is: what do you do with left over food: I know people who scrape every plate and tip the remaining contents of every serving dish into the bin straight after eating.

But what if you can’t get to the supermarket to stock up with all those lovely fresh ingredients?

What if money is tight?

If you have food allergies?

If you were brought up to be frugal, like me and put them all in little labelled bowls and boxes for later?

You see based on what I was told this week, there will be no trips for me to the fancy supermarket of life with aisles devoted to exotic holidays, fulfilling careers, trips to visit family, shiny new affordable homes, or girls weekends away.

The life I have now is apparently what I can expect for the foreseeable future, because the State trusts that I will not abandon the two disabled young adults in my care, no matter what.

I was trying to find a positive way to view this information when I thought of my fridge. As you do.

I thought about how I will be stuck with the leftovers of life, like the stuff in the fridge at home.

But that’s not as bad as it sounds. You see I always enjoyed the challenge of trying to make something tasty from an odd assortment of leftovers, so why not look at life the same way? Yes there’s a good chance I will never get to visit Paris or any of the other places on my bucket list, but I can visit everywhere within an hour or two of Dublin. That means city, country, mountains and sea. Can anyone really ask for more?

My disabled daughter and I share so many interests, while youngest is happy enough at home for short periods. Both are reasonably good sleepers right now, which makes a huge difference.

I can help other people online and in the real world, but I’m not going to kill myself trying to beat down the resistance to change here. I’m done with that.

I’m going to be more selfish, do more for me, stop saving for a rainy day – look outside, that day is here. I refuse to become just another downtrodden carer. You can keep your lemons, I’ll be making carrot cake instead…

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Health Service Nappies driving you crazy? Try cloth! #NotAnAd

What? Is she mad?

I can just imagine the reactions to this idea.

I don’t know if it’s the same where you are, but in Ireland the Health Service provides free nappies (later called weird names like ‘Slip’ or ‘Pad’) for older disabled children and adults with incontinence problems.

Did you notice the word ‘free’?

You did?

So you’re probably wondering why anyone would consider turning their back on free nappies…

Here’s why:

1. They leak.
2. The only way to avoid most leaks is to fasten them so tightly you leave a mark.
3. They often split when you’re putting them on, resulting in an unused nappy going to landfill, though I sometimes make repairs with Duct tape.
4. Only four nappies a day are allowed (general rule) so I always run out and have to source some in a hurry from elsewhere.
5. Asking the delivery people to leave boxes of nappies in the side passage if you’re out is no longer allowed. You have to stay in the house ALL DAY to wait for them. If you’re a regular reader of this blog you’ll realise that was the last straw for me!
6. Smelly bins.
7. Very full bins that incur large waste collection charges.
8. A shed full of nappies.
9. Lots of large boxes to bring to recycling every few months.
10. Cloth should be a more environmentally friendly option.

Reasons to avoid cloth nappies:

1. Fear of the unknown.
2. The cost of cloth nappies.
3. The washing required.

In fact moving to cloth is something I’ve been thinking about for a long time, especially as cloth does not necessarily mean Terry nappies and safety pins any longer.

The cost of buying cloth nappies is not a huge issue here as I already spend a lot on extra disposable nappies for when we’ve used up the health services allocation. Nor was I too worried about the washing as soiled nappies are very rare (my daughter uses the toilet as much as she can).

The main reason I didn’t do this before is that it took a long time to find a supplier: the one I used provides online advice on the best nappy to order for each individual. As a complete cloth nappy novice I’m sure I asked some very silly questions, but she was patient and finally I took the plunge and placed the order for just one nappy as an experiment.

When it arrived it looked huge compared to a disposable and I began to worry!

Disposable and cloth nappy
Disposable versus cloth

The cloth nappy and its liner was easy to put on, and appeared very comfortable. But it did look bulky and would it leak?

In fact it did leak the first time, but on the second attempt I fastened it more tightly and everything was still contained after four hours.

For now she wears it in the afternoons which works well. I did try overnight, but that resulted in a serious leak, and apparently the nappy will probably need an extra layer if she is to stay dry all night. Something extra to buy, and I haven’t done that yet.

The cloth nappy is easy to wash, dry and store, and once I have solved the night time issues, I really think we might make the change!

(Though I’d say I will still keep a packet of disposables for now just in case…)

Reasons to be cheerful about inclusion

There was a huge pile of paperwork waiting for me when I emerged from my week’s break with friends and family. But the most urgent was not household bills or disability forms, but the need to confirm the summer activities for my profoundly disabled daughter.

It got me thinking how grateful I am that she has a busy schedule, and is more likely to be tired than bored. And when she’s bored, she lets me know! So it’s something I try to avoid…

Her busy schedule depends on inclusion. It depends on accessible venues, the understanding of event organisers, and acceptance of everyone involved.

But sometimes we can still feel like outsiders. Sometimes we go to events and realise that they actually aimed at young children, not 22 year olds with the intellect of someone much younger. It can be awkward.

Events that are designated as inclusive can be better, like parkrun, with a special mention for Tymon Parkrun which explicitly welcomes disabled children and adults. We’ve been to other runs that have a connection to disability too, such as the AsIAm autism 5K or the Alanna Russell Memorial Run. At all of them we tend to enjoy support rather than stares, and we feel part of something, part of a community, and not outsiders being allowed to participate. As a concession.

B also enjoys membership of a number of disability clubs: The Rainbow 13+ Club, The Rainbow Junior Arch Club, Remember Us in Balbriggan. They practice inclusion too, because most members have mild to moderate disabilities, and have speech and are mobile. Unlike my daughter. But while not everything is obviously suitable for B, the organisers never have a problem if I want to involve her in some way.

You see my daughter is different even by the standards of the disability community, but parents, carers and the disabled young people give us a stronger sense of acceptance, belonging and understanding. And that’s a much more comfortable place to be.

Other inclusive disability events include the recent disco night Bounce, and AbleFest, a music festival both for people with intellectual disabilities in July. One she attended, one we hope to attend.

Shopping centres are not my favourite place, but my daughter loves them for the people and the buzzy atmosphere, and they too are becoming ever more inclusive, with plenty of space and now Changing Places Toilets too, with the hoists that are essential if she needs to ‘go’.

I’m not expecting every service or event or activity to be inclusive for everyone – as a parent to two disabled young adults with incompatible needs, I don’t believe that’s possible. Life is messy, we’re not all the same, there is no one size fits all solution to every problem and every need.  Just so long as they can access what they need to survive and thrive, I’ll do my best to be cheerful.

Now I’m off to see what inclusive events are on today so my daughter and I can get out of the house, especially as the sun is actually shining as I type this!

Have a great week and head over to Lakes Single Mum for more reasons to be cheerful xx

R2BC at Mummy from the Heart

When carers have to rest haha haha

It was 10.37. The dishwasher was finally doing its thing, and it was time for me to crawl into bed with my tablet and catch a bit of Netflix and rest…

But tonight even the crawling bit was difficult. A suspected cracked rib means that almost every movement is sore.

You can guess what the recommended treatment is for a cracked rib: lots of rest. The one thing not available to family carers like me.

My own gut feeling was to Google compression bandages, as I’m trying very hard to keep the area rigid, but they’re no longer recommended as using them can lead to pneumonia.

‘Ouch’ may have become my favourite word, but the pain itself is not that bad, it’s the frustration that this injury resulted from housing and equipment that is less than ideal, and the consequences of this injury mean that I will have to give up most of the activities that sustain my physical and mental health. At least for a while. Normally a cracked rib takes about 6 weeks to heal, but how much longer will it take if I cannot rest? It’s a scary and depressing thought.

I may have to go to the GP if the pain continues to get worse, but do I ask for extra help with my disabled daughter? Will I get it? Do I deserve it when there are so many other people in greater need?

In the meantime my only plan is to look for lots of reasons to be cheerful, so watch this space…

 

 

Thanks Dundrum Town Centre #ChangingPlaces

One minute B was chatting and smiling at my friend and I, as we all enjoyed a leisurely lunch, and then my disabled daughter’s mood suddenly changed. That usually means one thing: she needs the toilet.

Normally I would make a mad dash to get home before she has an accident, but not today. You see we were visiting Dundrum Town Centre, which recently became the first shopping centre in the south of Ireland to install a full Changing Places toilet. This is an extra large disabled toilet with the addition of a ceiling hoist and changing bed which means I can help my daughter to use the toilet without risking injury to either of us.

It was our first time to use a commercial facility, and I was very impressed: it was spacious, very clean and there were clear instructions on how to use all the equipment.

Getting in was not so easy – you have to obtain and return a special key via the information desk, and it’s NOT the disabled toilet key that I already have. You can buy the one for the Dundrum toilet from the same locksmith, details in this link:

https://www.dundrum.ie/visitor-info/shopmobility

I also had to ask where it was (I should have checked the above link!) and I found it a little cold as there was no radiator.

Apart from those minor issues it was a wonderful experience. I’m not exaggerating. Even at home I’m pulling and adjusting and bending and sweating every time B uses the toilet.

We were in and out of the Dundrum facility in about 10 minutes, and I didn’t feel the need for a lie down afterwards!

It’s also made me even more determined to find a home for B and I where I can install a ceiling hoist, because if I find it hard to manage her physical needs now, how difficult will it become in 10 or 20 years time?

And if anyone doubts the need for these facilities,  I can tell you that when we emerged there was another family waiting outside to use it…

So thank you Dundrum, and I hope that every other shopping centre follows your example soon.

 

A battle won

Parenting one or more disabled children involves many unexpected roles, including becoming a fighter. In an ideal world a family would get information, appointments, a plan and advocacy support at the same time as a diagnosis. But that almost never happens. Instead families are pitched against each other for scarce resources all fighting a system that seems determined to deny our children what they need and deserve. But sometimes persistence pays off and I have to report that I finally FINALLY won the battle to get effective help and support for youngest.

This is giving me a bit more free time (less than you might think though!) so I’m doing a bit of catching up, from boring stuff like filing, paperwork (and finding lots of things to chase up, oops!) to fun stuff like my first proper run since I got injured.

Reasons to be cheerful 9.2.19

There’s also been lots of sleeping, apart from one night when my disabled daughter B was awake from 3am. For the first time ever I tried hoisting her onto the toilet in the middle of the night, but that wasn’t the problem. She wasn’t upset, just chatting and singing along to the music channel on the telly. Perhaps there was a full moon, I forgot to check!

The house has been calm and sometimes empty: less demands on me means more gets done, and time for the occasional leisurely bath instead of quick showers.

Of course I left the house a lot too: I caught up with friends, carried on bungalow hunting, and began the round of medical checks that are pretty essential once you’re in your 50s… And it seems that my eyes are healthy. Phew!

I know this is just a lull, and there will be more battles ahead, but for now I intend to enjoy the peace.

Sharing with Reasons to be Cheerful hosted this week by Mummy from the Heart.

R2BC at Mummy from the Heart 

Waiting

January is the waiting month, isn’t it? Waiting for the cold weather to end, waiting for the bank balance to improve, and waiting to feel better now that Christmas is over and life seems a bit grey and dull. Here I’m waiting for something to happen for youngest – the child I don’t write about on here. I’ve been waiting for months and months, and while I wait my weeks are filled with phone calls and meetings, and more phone calls and more meetings. We’re so close, too close, I’m stressed about the waiting, and stressed about what may actually happen. I’m doing a lot of hibernating too. Hiding from people for fear I will just rant unstoppably, or cry, or both.

The endless meetings are all part of the process, and at least they keep me busy so I can’t brood too much, so do they count as reasons to be cheerful? Does my hip injury count, which means enforced rest from running but more Zumba?

Also in Zumba related news, we’re dancing Flamenco this term, which really excites me as I always had an interest in Spanish music, right back to my school days when I prepared a dissertation on Zarzuelas – to the astonishment of the examination board in those pre internet days… Note to self: must put visiting Spain on my bucket list!

This is possibly the first year ever that I’ve got to choose my own calendar – don’t get me wrong, I love getting calendars as presents, but it was an enjoyable novelty to pick one myself. Of course there was too much choice, but in the end I plumped for a Lonely Planet calendar which has gorgeous pics of places I’ve never heard of and may never visit.

tasmania lonely planet calendar
Tasmania

My disabled daughter B rejoined the local 13+ club for teens and young adults with disabilities this week – it was a disco with now famous Mick and Dusty, and she loved every minute of it!

We also visited the Rainbow Junior Arch Club and I took these happy pics…

bronwen arch club jan 2019 collage

Being injured means I can salve my conscience about not doing enough volunteering for parkrun. Last Saturday B and I went to Tymon and took photos, and we hope to do Tail Walker at Fairview this weekend.

Finally B showed she’s always determined to make progress, and this week I caught her picking up her drink using her very weak left hand. She really is an inspiration 😍

For more reasons to be cheerful head over to Lakes Single Mum.

R2BC at Mummy from the Heart 

On New Year’s Day

2018 ended with the very sad news of the death of a wonderful woman and former work colleague with whom I’d reconnected on Twitter in recent months. That made it extra hard to feel any sense of celebration about a new year.

January 1st began at 3am as usual with the now nightly clean up due to the issues affecting one of the members of this household, then the morning started with a beautiful new year smile from my disabled daughter B. It should have been enough to put me in a good mood. But it wasn’t.

This will be a milestone year : my youngest turns 18 in April and I will then be the mother of adults. But no prospect of an empty nest or a chance to live my own life.

Instead my parenting duties seem more intense and overwhelming than ever. I feel so trapped by it all, and crushed by the knowledge that I’m the only one who can engineer an escape plan that ensures a better future for all of us.

Yet I felt bad about feeling bad at the start of a new year that many will not see.

So I did what I have to do most days, and chose an activity to boost my mental and physical energy and endurance to do all that has to be done.

Today’s choice was another parkrun with B, with a more civilised starting time of 11am.

In the afternoon B and I actually stayed in the house: we put together my first playlist since 2015, and I may as well continue my blogging tradition of sharing the songs, though free wordpress won’t let me embed the videos:

We are scientists – after hours

Ash – Annabel

Green Day – good riddance

Bastille – Pompeii

John Newman – love me again

Heathers – November

Oasis – the importance of being idle –

Super furry animals – golden retriever

The stoat – try not to think about it

Carter USM – the only boy

Then we made a non alcoholic tiramisu to use up more of the left over naughty food in the fridge, and after dinner B ‘supervised’ me doing the laundry and putting the bins out followed by one last video before bedtime.

Between her bedtime and 3am I got some free time for Netflix, some sleep time and some worrying time about how much longer I can keep going.

But at least this New Year’s Day I did more than just chores and supermarket shopping trips.

There’s more to life than cleaning showers was what I used to mutter under my breath when the student flat cleaning rota was being given out. And I guess I still feel the same today.

As for 2019? It’s going to be a bumpy rollercoaster ride of a year, but as my new necklace says

Do no harm and take no shit

Words to live by for the months ahead!

How was your New Year’s Day?

 

Falling into the Mental Health Abyss

We’re all told to mind our mental health, so practice self care and mindfulness, to talk about our problems, and pace ourselves. But what happens when that is not enough? What happens when you beg for help and it simply isn’t there?

I am dealing with this situation in relation to a family member right now; it is completely overwhelming and a huge struggle. It’s hard to think clearly about the problems here, let alone define the problems with the system, but others who’ve faced this before do understand and can see clearly, and it was comforting to read these words of wisdom from Jackie (@ja54kki) this morning, and please follow her on twitter.

When we had a major crisis here in the past , the services were basically the police. I remember asking an Educational Psychologist years ago if CAMHS (Child and Adolescent Mental Health Services) provided an emergency service – and the answer was ‘no’. There’s the gap that needs to be filled.

The police can only do so much. Accompany you to A&E if needed, and/or stay until things have calmed. Paramedics can help with injury and arrange emergency medication through an emergency GP. Then, you’re left. No support in place.

I believe there is an emergency social services number for a bed, but how the hell could you place an already stressed and anxious young person in a strange setting with strange people? Where is this “ wraparound” care I used to hear about? More meaningless jargon.

There needs to be support in place to come to your home in an emergency. Very often a fresh face helps to de- escalate. Not rocket science. We need a service like this desperately, we shouldn’t have to use police services in this way. Not fair on them or us. 

What do you think?

No place for disabled people

The handles of her wheelchair were touching the door. The footplate was touching the toilet seat. If she could stretch out her arms, she would easily have touched the walls on either side. This was the disabled toilet in our local accident and emergency department.

My daughter wasn’t even the patient. But I am her sole carer, so if I have to go somewhere outside the hours of her day programme, then she usually has to come too.

I had to seize an opportunity and we left the house in a mad rush, just a few random things thrown into bags and hung off the back of the chair. No time for her to use the toilet, I just had to hope that there would be a usable facility available and that we wouldn’t be waiting too long. I *may* have been a bit too optimistic.

Phone calls were supposed to have been made, and we were promised we would be met on arrival. It didn’t happen. And when I saw how many people were waiting to be seen I understood why. There wasn’t an empty chair to be seen. Luckily my daughter was okay – one advantage of bringing your own seat with you everywhere you go.

Once I realised we were in a queue of indeterminate length, my first priority was getting help, and this is where Facebook is a life saver for me. I did text a couple of people first, but they were not available. And yes it was close friends who responded again, but I felt more comfortable putting out a general plea instead of approaching them directly and perhaps making them feel pressurised.

Being stuck in A&E means very little choice of food and drink, especially if you have a disabled daughter who needs a mashed diet. Again my friends were able to bring something suitable for her, and later a bag of (very good) chips for myself and the patient.

But my friends couldn’t really help with B’s toileting needs. I had to sort that out all on my own. I sat on the toilet seat and changed her while she lay half out of her moulded seat – dangerous and uncomfortable for both of us. I’m still amazed I managed it at all.

Later she was crying due to needing to go again, but I was trapped while the patient was getting attention and there was nothing I could do to help her until I got her home.

Really hospitals are no places for severely disabled people, even though the busy staff were friendly and welcoming and made sure we were seen quickly.

This particular hospital is due to get a new Accident and Emergency Department soon, and I really hope that a changing places toilet with a bench and hoist is part of the plan.

My daughter is very healthy right now, but that could change at any time, and she should have the same right to a suitable toilet as everyone else.