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…

Advertisements

Not another bloody hand massage! #CarersWeek

Are emergency department nurses offered free hand massages to entice them not to resign from their stressful jobs?

Or speech therapists, office administrators, housekeepers. No? Well why are little ‘treats’ like these expected to satisfy family carers who fulfil all the above roles and more, for little or no financial reward?

The week beginning June 10th is National Carer’s Week, and the role of the 370,000 family carers in Ireland will be acknowledged and highlighted, and thanked by a grateful nation who will then mostly leave them alone for another 12 months to get on the with their essential work with very little support.

Society still wants us to be saints, and if you look at the smiling kindly faces of carers in publicity photographs, that’s the image they are receiving.

Not photos of exhausted, resentful, angry carers with stained clothes and greasy hair. Or children juggling homework with changing nappies.

You see carers are not a homogenous group. Some feel privileged, some feel burdened, some feel it’s a private matter, some feel they have no choice.

Some care for a few years for an elderly parent, others face a lifetime of caring for one or more disabled children.

Some have plenty of support, financially and physically, with reasonably good services, as well as help from family and community, who live in suitable accommodation and who enjoy respite allowing proper breaks from caring and even holidays. Some are in situations so dire that they feel suicidal at times.

There are carers of all ages: Children who care for parents or siblings after school, perhaps missing out on activities and friendships.

Men and women who give up their careers to care for disabled children or elderly parents.

Partners of older adults who cope with the declining health of someone they’ve loved all their lives.

All make sacrifices, some willingly, some reluctantly. Few are truly acknowledged for what they do, or given the support to ensure that they and those they care for, can lead good lives.

My wish list this carer’s week would be for a tailored support plan for every family with regular reviews that could include services such as real respite, an end to means testing of benefits, suitable housing or adaptations, counselling services (in home if necessary), and future planning. What’s on yours?

As for me? If I have any free time this week, I won’t be getting a free hand massage. Instead you’ll find me at the gym, trying to work off the anger I feel about how carers are treated.

Happy Carers Week!

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…

 

 

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 

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?

Out of My Comfort Zone

What do you do when you’re feeling anxious and depressed? Perhaps it’s not a problem for you. Perhaps you meditate or exercise or take a bath or just breathe. Me? I tend to curl up on the sofa with Netflix and maybe a glass of wine. But all that does is take my mind off things for a while. The stressful routine of a carers’ life does not work well for someone like me who thrives on variety and new challenges.

And while I can’t easily change my current circumstances, I can make little changes to my daily routine, and this week I managed several big ones!

Smallest first….

I cut my own fringe. I’m always afraid of making a complete mess of it, but no one has noticed so I think it will do until I manage to book an appointment with the hairdresser.

Meeting new people for world mental health day. Always scary. Will I make a complete eejit of myself due to nerves? Will I trip or spill my coffee? In fact I enjoyed myself and it was great to have a brief chat with others who are dealing with crises similar to the one in my own family.

Finally, I went wall climbing at the nearby Awesome Walls with my fabulous running group (on a day off). I must have the climbing gene, as when I was a small girl I climbed trees and rocks with no safety harness and often on my own. Not usually a problem apart from the day I fell into a hollow tree…  And some of my friends will recall that even last summer I seized the opportunity to climb a tree when no one else would. Awesome Walls looked absolutely awesome. And it was. I don’t think it will become another hobby because it’s quite time consuming and lacks variety, but as an occasional treat, bring it on!

Awesome Walls collage October 2018

So those are my three challenging reasons to be cheerful for this week. Check out more at Lakes Single Mum.

If it works for dead saints, why not for me?

I can remember the years when my pillow really did smile at me. My bedroom was a cool, calm and comfy place. Going to bed meant climbing in, curling up and dropping off. Of course nights with the children usually meant that I was up and down like a Jack in the Box, but I sank into sleep every time my head hit the pillow.

Insomnia is a rare visitor here, like a wasp on a winter’s day. Even during the worst of the menopausal years I mostly slept, but not the recommended eight hours of sleep. It’s partly my own fault. After I left home, there was so much to do and see, so many people to meet, so much to experience and enjoy, that sleep just seemed like a waste of precious time. At College I would be up at 8am studying or swimming, in lectures at 9, manning the Rag Office at lunchtime, working in a bar in the evening, then on to a club followed by curry and home to bed at 4. Then I’d get up at 8 and do it all again…

I *may* have slowed down a bit as I’ve got older. But my children’s night time needs resulted in constant interruptions over the past 25 years anyway. Things were improving though, until this year. The crisis affecting my youngest has had some unpleasant consequences for me (as well as for him obviously, but I don’t write about him on here) and today is the anniversary of when it all began to go wrong. At first I thought the problem would be solved in a few weeks, then by the New Year, but a disastrous Christmas sent everything spiralling downwards, and I now feel trapped and traumatised in a very difficult situation with no good options, and nothing seems to be working.

I’ve been finding it hard to talk, to eat, to function, and also to sleep. The novelty of sleeping in the kitchen has long since worn off, though moving out of my lovely bedroom to sleep downstairs has worked out well for my disabled daughter. As for me, I now know every peculiar sound that fridges make in the middle of the night! And I’m also too accessible, as my sleeping corner is on the way to the shower room. This now means regular night time disturbances.

With these on top of all the other stressors, I ended up with night terrors so bad I would often lie awake from 2am, barely fit to cope the next day. Finally I went to my GP for help in August, and reluctantly went back on meds. A sticking plaster over a wound the system seems powerless to heal.

Something, possibly the bed, also led to trapped nerves in my neck and shoulder. As part of the solution I was told to stop curling up, and to sleep unprotected on my back. Ugh. I feel like a dead saint in a tomb. But if it works for them, I guess I’ll have to make it work for me.

And yes the meds plus the Calm app mean I am now sleeping a little bit better. But this can’t go on. Something has to change. After all, I’m not a saint, and I’m not dead either.

 

 

A butterfly with fragile wings

Progress is a beautiful thing, but in this house it’s fragile and easily damaged. Progress means hours when I feel almost normal again, when my anxiety levels go down, and everyone else in the house perks up too. And yes I’m having to write in riddles and hints, but I did promise that this blog would focus mostly on my disabled daughter B and myself – and not on my other children – so I can’t tell you exactly what’s been happening.

But I can tell you about my other reasons to be cheerful…

My weekend away with B, that I wrote about here.

Kerry

Rain. Only a little bit of rain, but I was so glad to see it, as I was beginning to worry if it would ever return! I know that sounds crazy, but extreme weather events have become the norm even in Ireland, and nothing seems certain any more. Not even rain. (Of course some people were complaining.)

Getting out for the whole day to attend a country funeral to provide support to a couple of friends. It was a risk, but everything at home was okay while I was gone. On the same day I agreed that B could go to the circus after hours without coming home from her day activities first. And that went well too.

I bought a different newspaper at the weekend to begin doing crosswords again. All the challenges this week (to counterbalance all the progress) meant that I am still trying to finish the first one. But it’s a start.

B and I joined the first outing of the Rainbow Junior Arch Club’s Summer Programme last Friday and we had a wonderful time exploring the Airfield Estate and Farm in South Dublin. We visited it once before a couple of years ago, and I wrote about that visit here.

Sculpture Airfield Estate

B and I went house hunting again, and with new bungalows as rare as pink butterflies, I decided to look at new two storey houses with large downstairs toilets and room to install a lift. And we found one. Of course the developer is only interested in selling to first time or cash buyers, but I’m not giving up just yet! At least I’m finding options.

But the butterfly of hope is fragile and elusive, and I’m always afraid it will fly away if something changes. This week though I will try to be cheerful and enjoy the way things are right now.

R2BC at Mummy from the Heart 

The Great Escape

It felt like some crazy dream. A road trip across the country with my severely disabled daughter in 30 degrees of heat, on the day the schools broke up.

For a weekend break.

My first break for seven years.

I didn’t believe it would actually happen until I pulled away with the van stuffed with enough emergency items to see B through the Zombie Apocalypse, never mind two days in Co Kerry. Of course I forgot most of my clothes…

When I got the invitation my instinct was to say thank you, but I just can’t manage it. As usual. But I have wonderfully persistent friends. They had a house with a downstairs room where B and I could sleep, as well as the essential downstairs toilet. They didn’t ask can you go, they asked when can you go .. And then my eldest said of course she could manage everything at home for a couple of days.

And so I found myself on Friday afternoon cruising down the motorway, sunglasses perched on my sweaty nose with the music turned up and B dancing in the back.

Almost five hours later we arrived to a wonderful welcome and food on the table. And so it continued – I barely lifted a finger, except to look after myself and my disabled daughter, and obviously that wasn’t always easy in a strange house not designed with wheelchairs in mind. Apart from that it was everything a break should be: great company, good food, beautiful scenery and glorious sunshine. Poor mobile coverage forced a digital detox, but I didn’t really miss it as there was always someone to talk to and something to do.

Killarney looked stunning in both sunshine and clouds, and there were plenty of wheelchair friendly rambles and places to visit. On the Saturday night we went out to dinner at a hotel overlooking the lake, and there was no hassle including a severely disabled young adult at the table. In fact no fuss was made at all, she was treated the same as every other guest. It was very refreshing.

The break reminded me again that with a little help, it IS possible to have a good life with a severely disabled young adult.

Trip To Killarney Collage June 2018