A happy busy 24 hours #R2BC

Sometimes I think I really can do this job – or I could if I had just one disabled adult depending on me and not two!

But back to our 24 hours of fun…

It all began on Friday with an 18th birthday party for the son of a very good friend. We arrived and left early (B doesn’t do late nights) but in between my disabled daughter had a wonderful time head dancing to her favourite DJs (Mick ‘n Dusty), smiling and laughing at everyone she knew and soaking up the atmosphere.

She was able to sleep in a little on Saturday morning as I’d entered us for the 5K Great Pink Run for Breast Cancer Research, which started at 11am instead of our usual 9.30 parkrun start. It was a wet miserable morning, but that couldn’t dampen spirits in the Phoenix Park where the run was held. I’d contacted the organisers in advance and had permission to take part with a large jogging buggy, and while I had to park at some distance, when we got to the start line the organisers suggested that B and I go in front and begin our run a few seconds before everyone else. This worked perfectly as it’s easier and safer when runners overtake us, instead of me trying to push through the crowds. We finished in 30 minutes 38 seconds, helped by a lovely lady called Val who shared the work getting up the hills – of which there were several! B was a little quiet, but enjoyed the crowds and the cheering.

In the afternoon we paid a return visit to the Rainbow Junior Arch Club for disabled children for the annual Halloween party. B was delighted to be back, but even she realised pretty quickly that she has outgrown it. So we left a little early and went shopping, another of her favourite activities.

I can tell you that she had a very long lie in this morning!

So that’s my cheerful post for this week, hope all is well with you too xx

Reasons to be Cheerful 20.10.19 B Smiley COLLAGE

 

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Drowning #WorldMentalHealthDay

Yes carers struggle with their mental health. I’m sitting here trying to do my breathing and drinking chamomile tea after receiving yet more challenging news. Meanwhile the dust piles up, the ‘to do’ list gets longer, as does the list of friends and family to be contacted. This blog is barely touched, I’m losing my place in the social media food chain, and have to say no to almost everything. The young adults are fed on mashed potato and pizza (but not together) but I mostly show you the happy photos because that’s what social media is about right?

Happy #WorldMentalHealthDay

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My banner for one of next week’s protests 16.10 at 11am Leinster House. BE THERE

 

Lorenzo’s Last Laugh

STorm Lorenzo, Bastardstown, Changing Places

There’s not many people who would still be smiling at the end of a day cooped up in my old van, driving to a remote corner of South East Ireland in torrential rain, but luckily I was with three of those people yesterday. One was my lovely disabled daughter, plus a long time friend of mine and her daughter.

Why did we do this?

My friend lives in the UK, but recently discovered that her family’s ancestral home was a small townland in Co Wexford and she asked if I would like to visit it with her.

I would have to bring my disabled daughter with me, organise support at home for youngest, do the trip in a day, and check out toileting facilities in advance, but hey I like a challenge 😂.

Our visitors arrived on Friday afternoon, and we all enjoyed a really convivial evening with lots of food and wine before setting out early on Saturday morning and heading south under an ominous grey sky. Before long it began to rain, and then some. This week Ireland was hit by Storm Lorenzo, perhaps this was the tail end of the weather system?

But with relaxing company, the miles flew by until we pulled in at the Irish National Heritage Park for lunch. Lovely surroundings, tasty food, and most importantly, the only changing places toilet in the county.

B was thrilled when she saw it , and so was I: it was huge, clean and with everything we needed – a disabled toilet, hoist, changing bed, bins etc and it meant we could enjoy a whole day out without worry or damaging my back.

Next stop was a small village where we checked out the graveyard and beautiful church nearby for evidence of my friend’s family, but we found none. Then we spotted a much larger graveyard as we left, but decided to save that for another drier day!

I followed the twists and turns of the country lanes past farms, and cottages, through floods and potholes, until we drove round one last corner and came to a sudden stop in at the edge of a small cliff facing into a boiling sea, with brown sand and white foam, whipped up by the wild weather.

We stopped to breathe in the sea air, take a few photos of the townland, and then dived back into the van to get warm and dry.

Our last stop was Kilmore Quay for afternoon tea where we sat enjoying the hospitality of The Little Beach Cafe. And looked out at the rain lashed harbour as we fortified ourselves for the long drive home.

Saturday reminded me that you can always have good days no matter however difficult life seems.

Storm Lorenzo didn’t have the last laugh after all. We did.

 

It’s a hard knock life!

Those were the lines delivered by my profoundly disabled daughter B on stage in a Dublin theatre on Friday via her big Mack communication device. It was a proud Mammy moment made possible by the inclusive drama group at her adult programme. It was also a great show with music and dancing and some natural performers who were born to be on stage and everyone got a standing ovation at the end. A wonderful night and thank you to the organisers.

And that’s the first of my reasons to be cheerful from the past fortnight. Others include:

…Waking up in the mornings without my hip collapsing in pain and soreness. Not every morning, but most of them. Hopefully that injury is finally on the mend.

…A random act of kindness from a neighbour who stopped to help me when he saw me struggling to put the hub caps back on my wheels.

…I completed my 50th parkrun on my own thanks to my eldest daughter minding her siblings and I missed my parkrun personal best time by just 1 second, but I was happy to dip under 28 minutes. My PB was set in 2017 when I was younger and a lot less stressed, so perhaps I can actually beat it one day.

50th Parkrun Fairview

… Great fun was had at a 13th birthday party that B and I went to, involving a bouncy castle and an inflatable guitar!

…More guitars at a festival celebrating buskers on the same weekend. Lots of rain did not stop B and I having a wonderful day out.

…Inspired by a post from the current host of this linky, Lakes Single Mum, I made Beetroot Soup, and both B and I decided it was delicious.

…B managed a whole day in adult cloth nappies. We’re getting there!

Have a great week xx

R2BC at Mummy from the Heart

The myth of free time when you’re a carer

It’s no surprise that family carers are undervalued. That people think we don’t deserve a decent carer’s allowance or one that’s not means tested. That our children don’t deserve respite.

Because don’t we get a great break every day when they are at school? (Or adult services)

Well no actually, we don’t. But I would be a millionaire if I had a euro for every time that has been said to me. And I know it’s meant kindly, but it makes carers feel even more isolated and misunderstood.

Here are some of the things that carers do while their children are in school:

Sleep
Because many disabled children and adult sleep very little or need a lot of attention during the night.

Self Care
Exercise – because carers need to be fit for their very demanding job.

Attend personal medical appointments (anecdotally carers tend to have more chronic illnesses, mental health issues and physical problems like bad backs due to their caring role).

Disability Administration and Meetings
Medical and therapy appointments with your loved ones.

Chasing up appointments and services that have not happened, and services that have been delayed.

Form filling. More form filling.

Ordering and collecting medical supplies.

Meetings with service providers

Preparing for meetings, writing minutes of meetings, sending them out and following up on all action points.

Social
Spend time with other family members (in my case my youngest).

See friends and others in the disability community for emotional support and information.

Organise or help organise social activities for their disabled loved ones who might otherwise have no friends or places to go to on evenings and weekends.

Housework and Maintenance
Yes carers have to do that too, and it may involve cleaning up more mess than the typical household as well as more laundry.

Disabled children who regularly get distressed may damage the house or break household furniture or equipment so repairs and replacements need to organised.

Cooking: Many disabled children and adults have specific dietary requirements or will only eat certain foods, so different meals for different family members may need to be prepared several times a day.

Research
To rights, entitlements , therapies, information, equipment.

Researching  a hard to get game or toy that your child must have and you know they won’t understand or accept your failure to produce it.

That’s all I managed to think of over breakfast. What would you add?

Note: I know I’ve written about this before, but this idea that I sit at home all day doing very little is extraordinarily hurtful.

The things they don’t tell you about disability: Osteoporosis

Once upon a time, my beautiful disabled daughter could stand straight and small in a tiny stander that looked suspiciously like torture equipment, but didn’t bother her at all.

Smiley 8 Stander standing

As the years went by, Bs legs began to stiffen and bend, and despite daily stretching for more than 20 years, they will no longer straighten.

But when she stopped using the stander, she enjoyed using a walker until she outgrew that too and no suitable replacement could be found: disability equipment is mostly made in standard sizes and designs, and my daughter is not ‘standard’ in any way!

I was disappointed as I always believed that sitting in a chair all day is not good for anyone, including people with physical disabilities, so she got daily floor time, and swimming as often as it could be organised.

However I’d forgotten one thing: the importance of weight bearing (though seriously, why is knowing everything my responsibility???) and when a DEXA scan to measure her bone density was ordered, I thought nothing of it.

It turns out that medication for seizures combined with inactivity put her at high risk for… osteoporosis. I thought it was an old person’s disease, but my darling daughter has been diagnosed with the condition, aged just 22.

So now she needs to take calcium and vitamin D and I have another urgent task: to get another stander and walker for her as soon as possible.

 

Reasons to be cheerful: Getting Organised

Life is still giving me a good kicking, and that’s making me more determined than ever to find – and engineer – some reasons to be cheerful.

September always feels more like the start of a New Year than January, with the end of the summer, and the beginning of a new school year, while job changes, car purchases and moves for me have always happened in the autumn, so there is a flurry to bills to pay and things to organise.

So ‘organised’ is how I plan to be this month. Over the summer, I’d been randomly tackling various jobs but on Thursday I decided to put together a full list, something I used to prepare regularly, but the last one I could find was dated March 2018. And I was pleasantly surprised to discover that despite the chaos and trauma of the past 18 months, I was actually able to cross off most of the items.

My garden has looked very sad for a long time, so on a visit to the local hardware shop I grabbed the first six pack of plants I saw, and shoved them in the weedy containers in the backyard, and it does look a bit better as a result.

Screenshot 2019-09-08 at 16.24.50

Earlier in the summer I made plans to ensure my old van would pass its roadworthiness test (called the NCT in Ireland), including surprising my local garage by booking a service and pre test check two months in advance! But I still did a double take when the technician gave me the certificate and told me she’d passed… Such a relief.

I’m also getting organised ahead of the prospect of empty shelves post-Brexit in November thanks to some ‘junk’ mail consisting of vouchers for my local Lidl store that gave me €10 back for every €50 spent, and I rarely spend that amount in Lidl so it was actually a challenge! But it’s enabled me to stock up on essentials: extra important when you care for two disabled adults with very specific needs.

Then on Saturday I got the opportunity to dust down my rusty professional skills when I attended the AGM of a national disability organisation. I always enjoy the chance to do something that feels like ‘work’, and yesterday I was able to bring my disabled daughter with me to the event, so there were no guilty feelings either.

Screenshot 2019-09-08 at 11.45.34

Finally I discovered why my smartwatch did not appear to be logging all my ‘steps’, I’d blamed its low price, but it turns out that steps are not counted when you are pushing something, so as I walked to and from the AGM pushing my daughter in her wheelchair, it seems I clocked up 15,000 odd steps yesterday, and not the 9000 that my watch recorded. Am feeling particularly virtuous now 😀.

Head on over to Lakes Single Mum for more reasons to be cheerful and have a great week xx

R2BC at Mummy from the Heart 

Summer of Smiles 2019

Summer of Smiles 2019
World Festival 2019, Alana Russell Memorial Run, our little bedsitting room, Zumba at Remember Us, Parkrun Marshalling, Meeting Place Arch Club, Hotter than July Festival in Smithfield, relaxing at a medical appointment

What does Summer mean if you don’t go on holiday and your children are young adults?

It could feel like a non event, I guess, the same of the rest of the year, but with a need for sunscreen and extra deodorant.

Some in Ireland are denying there was any summer at all – because there was no heatwave – yet I’m browner than I have been for years, and I’ve enjoyed the sunshine and showers, the cooler weather, fewer smelly bins, and less need to water the plants.

I made the most of it, and so did my daughter, as you can *probably* tell from the collage of happy smiles, yet the smiles were scarce at times, and it’s only in the last week or two that I felt she was really happy once again. I could not tell why she was sad, and she could not tell me either. But thankfully whatever was bothering her did not develop into anything significant.

It was also a summer of facing facts, of making choices when all of the options were less than ideal, of realising I have to find a better way to live, for myself and for the two young adults who depend on me. Time will be in shorter supply than ever, and there may be even less blogging and social media. However B’s place on her adult programme has now been made permanent, and that is one less worry, especially as she is so happy there, and the services provided make my life a little easier too.

Progress was made on some important projects during the summer. A lot of decluttering was done and, in related news, I did move in to B’s room, though I’m waiting for help to get it finished. It’s like a little bedsitting room now with two beds, two chests of drawers, B’s wheelchair and hoist, my desk, a telly and a comfy chair so I can sit with her in the evenings which saves heating the living room and means I don’t have to stray too far to help with whatever is bothering her during those hours. Our room is adjacent to the kitchen and B’s wet room, so it has almost everything we need close by. And as the weeks pass, I hope to keep making little changes that will make all our lives a little better.

Head over to Mummy From The Heart for more reasons to be cheerful:

R2BC at Mummy from the Heart 

Getting results for my disabled daughter #R2BC

August used to be the month when everyone goes on holidays, including most of the professionals who support my young adults, but not any more. It would be very ungrateful to complain about having too many appointments when so many families are fighting so hard to get anything, but it can feel a bit overwhelming at times!

However the appointments are yielding results (and information as per yesterday’s post).

Sleep

This week my disabled daughter attended a Night Positioning Clinic, which actually looks at all aspects of sleep, and finding a way to help her lie in bed that is both comfortable (so she can sleep) and therapeutic (so her body shape is maintained as far as possible, avoiding complications like scoliosis).  A sleep system is anything that supports the body in bed. Ideally B would sleep on her back in her soft sleep system that she has had for a number of years, but that has not worked well for a long time. So this week she was given this giant soft loose ‘W’ cushion (a bit like a bean bag) to put under her legs and with that she’s managed to sleep on her back for 3 out of the past 4 nights. So hopefully this will be a breakthrough for her.

Nappies

B is still using the one adult cloth nappy that I bought! I don’t think they’re as absorbent as a disposable nappy, but I’m using it almost every day, and hoping to buy more soon. I still need the disposables as well for now, and was a bit anxious when I heard that the health service was introducing a new supplier, especially when the new delivery didn’t arrive on the designated day, but they did arrive the next morning, and luckily I was in at the time.

Buggy

If you’ve been following my daughter’s story over the past few years you may have noticed that many of the photos feature her in an adult sized buggy, rather than a wheelchair, even though I vowed after her 21st birthday to use the wheelchair as much as possible to reflect her age.

BUT the buggy is a system with all the accessories you would find on a child’s version. Wheelchairs are not designed for Irish weather, or adults who need portable trays, or carers who need a chair with lots of storage. I still much prefer the buggy, and it’s also needed in case the wheelchair ever breaks, which has happened in the past. So I was devastated when one of the essential cables snapped. And then I was told that the manufacturer was no longer supplying parts for this model (it’s more than ten years old) and none of the Dublin based disability equipment firms wanted to know.

No guesses where I got details of a company that might be able to help.. Yep Facebook yet again. For all its faults, it’s a lifeline for families like mine. So yesterday saw me trundling down the motorway to lovely Laois to visit LifeStyle Mobility. Everyone there was so nice and helpful, and the buggy was fixed while I waited.

It was a rush to get it all done and back to Dublin before B came home, but I enjoyed the road trip, and even stopped to take this photo. It was great to get out of the city and get another problem solved too 💙

Screenshot 2019-08-10 at 11.48.36
Lovely Laois

Have a great week xx

R2BC at Mummy from the Heart 

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…