And then there were three

Morriscastle Beach, Co Wexford

Some of the happiest days of my life were spent on this beach in Wexford with my babies. Like so many parents, I thought those days would never end. I forgot my children would stop being children one day. I forgot they would move on from building sand castles and and jumping in the waves..

But I can’t forget their happy faces and the excitement that would build as we turned left at Gorey and the roads got narrower and the trees closed in around the car, until suddenly we emerged and the green and gold fields stretched down to a blue sea under a paler sky. It was a simpler way of living, with beans on toast and buckets and spades. How I miss it!

There were five of us in the family then, but it was usually just me and the kids in Wexford as my flexible job meant I could take lots of leave over the summer.

In time we became four.

And a few years later, the trips to Wexford ceased.

They all became teenagers and did their own thing, apart from my disabled daughter who went almost everywhere with me when she wasn’t in school.

But my little family endured. There were breaks when my eldest went away on trips, to volunteer, to study. But she always came home again.

Today I waved goodbye to her as she finally set up home elsewhere.

But before that we made some memories.

Last night we went out as a family. Which is unusual and difficult for us, as many of you will know. And because it’s so rare, I was reminded of the old days, and there was such a temptation to turn the car round and head south towards the sun and Wexford, with Sheryl Crow playing loudly on the car stereo.

If it makes you happy.

Because it did.

As well as being a bitter sweet glimpse into how life should be with three young adults.

But the night was also a celebration of success. I have helped to raise a happy healthy adult who is now ready to live her own independent life.

It’s a change, but change is all around us, if we refuse to accept it, we can end up getting stuck, left out, left behind, forgotten.

There’s three of us left here still, but I’m determined we won’t get stuck or be forgotten. We’re going to change too.

 


Lessons for a New Decade

“You need to practise self care so you can keep on caring,” said the course facilitator.

That was the moment the mask slipped.

The promotion of self care is not about the carer, it’s because the Irish Health Service has “no money”, so all it can offer to many desperate families is advice on selfcare. Not respite, not supported living, not more help, not more therapies, not better services. Just advice, so we can keep doing the same thing for longer and therefore not become a problem, a family in crisis, an emergency, an embarrassment.

Because that would NEVER do.

It was one of many lessons I learned during the past ten years.

I also learned that everything changes. Ten years ago social media was a source of wonder and hope, a way to deepen connections with friends and family, a way to ease isolation and find others facing similar difficulties in their lives, a place where you could have conversations with anyone, anywhere in the world. Now my accounts are locked down and I censor everything I post very carefully indeed.

In similar vein I learned that trauma means people may be triggered by the feelings and opinions and expressions of others. So I keep my big mouth shut much more often than I did ten years ago. Especially on here.

I learned that life goes on after someone you love dies. It’s different, there’s a void that can never be filled, but you learn to carry it with you through the days.

I learned you cannot stop people judging you, your family and how you live your life. But I’m trying to be less judgemental of others.

I learned that the wise woman who told me life never really settles was right, as there will always be new joys and sorrows, challenges and gifts.

I learned that most of the online advice on how to look after your mental health and improve your life comes with one unspoken caveat: not applicable if you’re a carer.

I learned that readers enjoy emotional posts, but not anything overly negative. Another reason I publish less! There will still be posts on here when I have some significant news about my profoundly disabled daughter. But I’m not sure how much else I want to share.

I learned that nothing changes when your youngest disabled child turns 18: You’re expected to soldier on, but now without information, training or parental authority.

I learned that even little things can send me into complete overwhelm. I nearly cried the other day when I heard that an important state document will no longer be posted out to me. Instead I have to go and find it online, hope my password works, hope the site works, hope it doesn’t crash, then download it, save it, print it and hope the printer doesn’t run out of ink. It might take me only 5 minutes, but might take 50. It becomes yet another chore to add to the long long list.

I learned that I want to be a parent but not a carer.

I learned that I have my limits, physically, mentally and emotionally, and they have all been tested over the past ten years. As I *may* have mentioned before, this crazy rollercoaster ride we call life is going faster and faster and my 60th birthday looms large. Already I cannot manage everything in my life, or give enough time to those who need it. So while many of my peers are beginning their well deserved retirement, the years stretch ahead for me with no offers of any break from caring. Ever.

I know it’s up to me to change this while I still can. Before I give up. I know my young adults deserve better. I also know I can only change myself and my life, so that is what I plan to do. So you won’t be surprised to learn that this is my New Year’s resolution.

I am no longer accepting the things I cannot change. I am changing the things I cannot accept.

Of course there were positive lessons too from the past decade..

I learned I love dancing, wall climbing and word searches, but not gardening or administration or housework!

I learned there are good people everywhere, including many who work within the Irish Health Service.

I learned I have a wonderful support network, which has never failed to be there for me and my family.

I learned that exercise and spending time with people in the real world is the best medicine for me and my feelings of overwhelm, anxiety and depression. And so I began 2020 by pushing B around a Parkrun in St Anne’s park. It was a beautiful, bright and crisp morning and my spirits lifted to be surrounded by so many other people determined to start the decade with hope and positivity. Maybe I can change the future after all.

(If you like this post and want to share it on social media, please use the sharing buttons below the photo, as obviously you cannot retweet from my now locked twitter account!)

St Anne's Park with effects

 

Bah Humbug

The tree is up, the cards are mostly written and posted, my virus is almost gone, but my stress levels are rising. My girls are fine, it’s my youngest once again. We’re back on the rollercoaster that I wrote about back in 2011. I try very hard not to write about him on here. Or anywhere. Which means I’m left to cope alone, and make major potentially life changing decisions alone: I can’t keep dumping on friends!

The problems happening here are not discussed on social media, it’s all positivity, and if you’re not positive, you get trolled. So the help that was available ten years ago, is just not there now. Yes, professionals offer help, advice and options, but I would love to hear the other side – what should I agree to? What are the risks of putting my trust in professionals? What do I need to consider?

But who can I ask?

Anyway, in good news, B will be attending a couple of Christmas events this weekend, so I should have a cheerful post for you soon xx

Screenshot 2019-12-07 at 10.40.17

 

Through a Glass Darkly

This phrase popped into my head today. I sometimes feel so detached from everything that it’s like I’m confused and hopeless in the dark, and separated from the real world by a giant pane of frosted glass.

This is all about the difficulties I don’t write about on here. Occasionally I do write about them elsewhere. Anonymously of course.

But it’s worth mentioning on here because it’s why you may not hear from me for a while. It’s why I’m not taking so many risks. It’s why I say no all the time, or change plans. It’s why I’m still losing weight, because eating has become another chore too many.  It’s why I’ve less patience than ever. It’s why when I’m trying to stay calm, I often look angry. It’s why I feel empty. It’s why the tears are dry.

I’m doing the things that work, in the places where I feel safe, with people who understand, the parkruns, my running group, my Zumba class, my daughter’s social groups, meet ups for coffee. My lovely eldest daughter provides normality and support, and I love to see B happy, she brings me joy and lights up the dark days.

But they’re still there, with no end in sight, just long long waiting lists and a system that doesn’t care.

 

 

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

 

 

 

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 😉