A better view

It’s not been a good day, and I scrawled a ranty angry post about the parent carer trap that I’m sure you don’t want to read, especially as most of it poured out when a friend dropped by..

So instead I will look forward to the long weekend, even though today’s abandoned paperwork will be hanging over me like a dark cloud.

Bank holiday weekends can be a bit lonely with everyone away, but thanks to social media I have a list of events that B and I can enjoy.

Expect photos, and a better view than this …

A better view

 

 

 

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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…)

If you can’t beat ’em..

I’ve been increasingly annoyed by the barmy bike brigade in recent months – you know who I mean, the people who think that everyone should do every journey on a bike and if they don’t then they’re just being lazy, unimaginative and destroying the planet. They’ve been emboldened by the green wave in recent weeks, and recognising when I’m on the losing side, I got out my old bike this morning to go to an appointment when Google Maps told me it would be faster

And it was.

So perhaps I’m wrong when I argue that cycling is only for people with time on their hands who are fit, healthy, child free, financially solvent and most of all, NOT under time pressure?

I used to use the bike fairly regularly, but it’s been a few busy difficult years since I’ve cycled in the city, and I was interested to see what had changed now that cyclists are having a moment.

I can confirm that some things have not changed: It was still a scary, smelly and sweaty experience, and wet on the way back 🌦️

However, there are far more cycle lanes, and I noticed a big change in driver behaviour. They were much more aware, giving me a wide birth or crawling behind me until it was safe to overtake.

Cycling is also easier now I’m fitter, but that only happened thanks to my car (a story for another day).

On the downside my bike saddle is still uncomfortable, the front tyre has a slow puncture, and I’m still afraid the bike will get stolen.

I’m also afraid that I won’t find anywhere safe to leave and lock it when I get to my destination: that’s something motorists don’t really have to think about.

Another bug bear is not being officially allowed to cautiously turn left on a red light. But it’s okay to get off the bike and walk round the corner!

However the trip was a qualified success, so I will try to use my bike more, but there are only a few journeys for which it makes sense. Expenditure would also be needed on suitable clothes, possibly a helmet, a better bike lock, a new saddle, and a friendly local shop that can keep the bike in tip top condition!

After the appointment, I came home, dried off, and went back out again… after loading up the van with junk for the recycling centre.

So two journeys instead of one, not quite so much time saved after all.

Bike, cycling,

 

The Heron

Grey skies

Trees sag under the weight of humid heat

Breeze blows around the stink of waiting bins and stagnant water

Colors are dulled

But algae blooms toxic green

Shallow waters barely flow

Trudging over the bridge

Passed this way a thousand times

Nothing new

Then out of the corner of my eye, I see him

And the day is suddenly brighter

Pure white and soft grey

Standing proud and tall surveying his kingdom

The heron in the river.

Screenshot 2019-07-08 at 17.54.01

 

Struggling

I turned 57 this week and while I had lovely run and lunch with friends to celebrate, this was a landmark birthday and my situation has really hit home.

You see my youngest turned 18 in April so legally my parenting responsibilities ended there.

Obviously I accepted a long time ago that I would be caring for my disabled daughter B for life.

But my youngest does not have an intellectual disability so I absolutely assumed that providing full time care for him would end this year.

It hasn’t.

There is no time scale on when it might and I just feel my life is really over now.

It’s not as though I’m any good at parenting him, the best I can say is that I’ve kept him alive. It’s not much of an achievement.

Why am I telling you this?

Because I don’t think I can manage a cheerful post this week, and anything I have half heartedly drafted is too angry for publication, so there will probably be fewer posts on here until I can get my head around things.

Thanks for reading.

 

Crushed

When B was young, I began investigating residential options for her, assuming she would live independently once she was a young adult. Now I don’t trust anyone else with her care, and I expect to look after her until one of us dies. I had a fresh start and a good life planned for us both.

But those dreams are being crushed.

I’m now under pressure to maintain the status quo, and continue providing care to two young adults for the foreseeable future.

This is unsustainable, and I do not believe it will be good for any of us.

But I am being made to feel selfish.

Did the people who insisted on the closure of all residential accommodation for disabled people realise the consequences? That very few are given the supports to live independently in the community unless they are extremely determined and able.

Most are still living with their families well after the age when they should have left, and whether the family home is suitable, and whether their parents or siblings are willing and able to care for them.

Disabled people should not be seen as a ‘burden’ on society, but that mantra should not be used to guilt trip family members to give up their lives to care either.

I am not a natural carer. I do not intuitively understand the needs of one of my young adults, I am not practical, repetitive tasks bore me, and being stuck at home makes me depressed..

I need variety, a job where I am valued, paid and appreciated, where I can use the skills I still have, be around other adults, and feel a sense of purpose and achievement.

But I’ll be 60 soon, and eventually it will be too late for me to make a fresh start.

I know I’ve made my bed and should lie in it, yada yada, but I shouldn’t be left there alone. I know that services are provided, and more are planned, but they don’t fix many of the fundamental problems. The enormous workload associated with managing the care of two young adults, which I may write about another day. The emotional, mental and physical toll. And the other stuff  – I’m trying to get help with the housework, house maintenance and the garden, but I keep getting let down or ripped off. I can understand now why so many old people’s houses are in poor condition: eventually you just give up.

I’m tempted to let it all play out, and let someone else clean up the mess. I’m done.

Note: Now I’ve let that out, I will try and write a cheerful post later, even though I’m beginning to resent the pressure to present a happy and cheerful face to the world and to my family. Because this is my blog, and you don’t have to read it 😉 

 

Would you take this bike to help save the world?

I’m serious. Between extreme climate events and a couple of recent books that claim the world and humanity is already doomed, I’m worried. But clearly Governments and Corporations and most of the media are not.

People like you and I are supposed to be consumers. If we stop buying stuff, the economy slows down, jobs are lost, tax take reduced and everyone suffers. At least that’s the narrative we are constantly fed. But according to climate scientists, that all has to change, as well as how we live our lives, use energy etc .

And I see friends making small changes, but many more people are struggling with time poverty and simply cannot manage any more than they are doing already.

Back to the bike.

I’ve spent many hours over the past few years trying to find a new home for it and cleaning it up each time, especially as it was passed on to my son by a friend.

I’ve tried to give it away twice, and I’ve tried to sell it too. On two occasions people who said they wanted it never followed through. The most recent attempt was for charity, but between the delivery arrangements and the discovery of punctures, and with so much already going on in my life, my stress levels rocketed. I’m afraid my frustration spilled over into my emails, and understandably the charity involved sourced the bike they needed elsewhere. So I still have the bike. Apparently getting the punctures fixed will cost between €10 and €12. But is it worth it? Does anyone want a junior bike that must be 10 years old at least?

Would you like it?

It’s one of several items I’ve tried to rehome in recent years. They are all still here.

I do what I can to help ‘save the world’: Clothes go to charity shops, I spend a stupid amount of time washing and splitting waste between our three bins and taking boxes, bottles, batteries etc to the local Bring Centre. The only weedkiller I use is boiling water.  I don’t replace things without trying to repair them first. My kitchen units are nearly 20 years old, the curtains are older, and that’s fine with me.

There are many people in my position. But little will change until there is more help and support for those who already feel overwhelmed by daily life. Of course the big fear is that change will be forced upon us all through catastrophic events, leading to many deaths and presumably survival of the fittest.

That prospect is so big and so frightening and makes most of us feel so helpless that it’s easier to think about booking the summer sun holiday than wondering how much our air miles are contributing to the destruction of the world. Or any of the other things we do or don’t do on a daily basis. Like why I don’t ride my bike…

Until there are fundamental changes in society and the economy, which will have to be led from the top, and probably pushed from the bottom, I don’t see things getting any better. What do you think?

And as for this bike? Rehoming it should be just one small step towards saving the world. But sometimes even small steps are harder than they look.

bike, bicycle, junior bike,

 

Mercury Rising

So the mercury was rising in the thermometer of my life this week as hopes were raised all over the place, so much so that one of my good friends suggested I do the lotto too. Just in case I’m on a winning streak.

I can’t tell you most of the news, though I may put something on Instagram if all goes well.

The week was busy too, and not with depressing form filling or cleaning or other happiness draining activities. There were stressful but positive planning meetings, a lovely late Christmas present from one of my wonderful friends, a successful and happy Powerchair training session with my disabled daughter B, Zumba, a visit by our lovely home hairdresser, assisted swimming with B, a walk in the Phoenix Park with a friend, followed by an evening seminar on Independent Living.

Then there was Friday.

On top of my caring duties and 2 hours of phone calls relating to youngest, I managed the following:

– collecting a parcel with a new charger for my watch. I also did a factory reset, and it’s working properly again. Hooray!
– attending another painful physio session for my hip injury that has prevented me from running for the past two weeks, but I’ve now been given the go ahead to start again. Yippee!
– visiting a new housing development that didn’t meet my daughter’s needs, but I was told there may be some ‘single storey dwellings’ in phase 2. Excited much.
– dashing back into town to buy some adult nappies as B has run out and there’s no delivery till Tuesday, and I saw some pigeons out of the corner of my eye and took a random photo of them chillin’ on a window ledge. Love it when that happens.
– sleeping for 8 hours with only 2 interruptions. Though I did have a sleep hangover afterwards. Apparently the cure is another good night’s sleep, so here’s hoping I can get one again soon…

reasons to be cheerful january 26th 2019

So those are my reasons to be cheerful for this week – head over to Lakes Single Mum for more.

R2BC at Mummy from the Heart 

Thank you

2018 was a difficult year for two of us in this family, and I am very glad to see the back of it. It nearly broke me. But it also reminded me of all the good people in this world, as I have been supported every step of the way.  Too many to mention, from family who took a break from their own problems to visit, to real life friends who were always there for me, to on-line friends who sent presents and took an interest in everything that happened to this family, to all those people who organise the activities I have enjoyed throughout the year, and all the times my disabled daughter has been included. I even achieved a couple of firsts, with a weekend away with B and some friends to Co Kerry, as well as a morning spent wall climbing.

So a huge THANK YOU from me and mine to you and yours, and for 2019, I would wish that everyone who is struggling enjoys the same level of support as I do.

My hope for 2019 is that I will see results from all my hard work over the past 12 months, but I also know I face some difficult decisions and hard choices. Sometimes you have to take risks, and I’ve seen what happens in families that do nothing, where they just keep trying to cope. Until they can’t. I’m not going to let that happen here.

2018 highlights

 

Baby, it’s dark outside

Velvet black skies, even at 7am. Just the glow from the orange street lights out the front. Not a sound, except the drone of the fridge.

Wide awake for the night shift, sleep did not return, and I gave up before 6 to see in St. Stephen’s Day in the calm of early morning.

Pacing around the house quietly, tidying this and cleaning that. Creating a new normal with all the lovingly given Christmas presents. Finding new homes for them. Squeezed onto shelves, squashed into drawers.

Meantime outside the darkness wraps around the red brick terraces like a new blanket, while the people who live in them sleep off the excesses of Christmas day. It’s giving so many the chance to rest, nest and reflect.

We’ve survived another year as my eldest always says. And we survived Christmas Day too, with the help of my girls and a dear friend. Today we look forward. There’s a week to fill before the manic chaos of normal life returns. Decisions, decisions.

By 8, I am joined by the early birds tweeting, and a lone bin lorry rumbles its way down the street – not ours. Our overflowing bin will have to wait until the weekend..

The first rays of light are spilling over the rooftops. Soon, very soon, my disabled daughter will be the first of the household to wake, and my time will no longer be my own.

And then I hear a giggle from the next room. She’s awake and she’s happy. It’s going to be a good day.

Baby it's dark outside