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

 

Too sick for chocolate..

Even my profoundly disabled daughter looked very concerned yesterday when she saw my puffy eyes and red nose as I struggled to get her up and dressed. I’m not feeling well, and looking worse. But of course it’s only a bad head cold, it can’t be flu because I’m out of bed 🤔

But then I have to get out of bed, because even if I hadn’t cancelled B’s morning’s carer, I would still have been on duty for the hoisting. Health and safety rules mean that two people are required to operate a hoist – apart from family carers who are expected to manage on their own. There are no guidelines about our working conditions.

I didn’t do a great job yesterday morning: B had to skip her shower, and went to her day programme with no AFOS (her leg splints) and her hair in a (very) messy bun.

The day passed in a blur – thanks to streaming eyes and nose, and I tried to rest in between the hot drinks and smoothies, which was all I could manage: I didn’t even fancy chocolate!

I haven’t been sick for a while, and the sitting down time got me thinking about the perverse situation of family carers who get ill. The State currently seems to treat the support of disabled people as a private matter, and that extends to their carers too, who are expected to have support network who can step in to help out at a moment’s notice. Really? When most families are struggling with high mortgages, long commutes, expensive and hard to find childcare, supporting elderly parents, increasing amounts of household administration and maintenance, and more?

I do have people who I can call on in an emergency, but a head cold doesn’t really qualify. My biggest worry is how I’m going to entertain my darling disabled daughter for the next two days. She loves to get out, and tonight B and I should be going to another very special birthday party that we’ve been looking forward to all year. But will I frighten the public and the party goers?

So what should family carers do if they get sick?

If I wasn’t a lone parent, or had local family support, perhaps I could’ve stayed in bed so my young adults won’t get my germs. (In my case that would be the spare room as I sleep in my disabled daughter’s room now.)

If there was emergency home respite and two care workers could visit when a family carer falls ill, then perhaps I could have taken a proper break.

When I was still in paid employment, the policy was to encourage all employees to stay at home when they were sick to avoid infecting others. For family carers, we have to tell the healthy care workers to stay at home so we don’t infect them. So when sick, we have to do more.

What happens to family carers who become completely incapacitated through illness, injury or surgery? I’m not sure, though I still have a letter from the health service promising this family round the clock support. Would it actually happen? I don’t know.

What happens to the disabled people in the care of family carers who have a health crisis at home? Especially people like my daughter who cannot call for help, leave the house or do anything to meet her basic daily needs? As I said before, if I am to care for my daughter for the rest of my life, safeguards need to be put in place. Something like a twice daily check in system to make sure that she is okay.

On a more positive note, I have been feeling grateful once again that I can escape from the house most days to do some exercise because the pent up energy is especially useful when I am sick, but have to keep going. I even considered doing #parkwalk this morning, but didn’t *quite* manage it, and as I write this mid morning I’m hopeful that I’m already on the mend: I may have been too sick for chocolate yesterday, but this morning I managed to force down a mince pie. After all, it is nearly Christmas ⛄🎄🎅

 

Fudge, family and elephant feet

**Disclaimer – I was not asked or given any inducement to mention the companies in this post, I just believe in giving credit where it is due**

Just back from my first trip overseas for 8 years, with only my profoundly disabled daughter for company. Mad? Perhaps, but good too.

Our 4 day break was by turns stressful and relaxing, then stressful again, but I knew I was on holidays when I found myself sitting in front of Sabrina the Teenage Witch in the middle of the afternoon eating fudge while B played with her toys. I’d put the show on for her, but ended up watching it myself 😊. Wild huh?

The trip began properly on Friday morning at 1.59 am, when B decided to wake up, maybe she was excited? At least it gave me lots of time to finish packing. We’ve done the ferry trip many times in the past and little has changed except there are no fast ferries now during the winter months, so it was a much longer journey, but at least it was familiar, and we were well looked after by the Irish Ferries staff.

Irish Ferries, trip to Wales

Our destination – Shrewsbury – was not so familiar. Which was good and bad (the one way system and the steep hills!)

Shrewsbury across the River Severn

Staying in a hotel with B was another first, and I had no idea how it was going to work. We were given a well appointed room for disabled people on the ground floor (which was raised from street level and reached by ramp at the front and a lift at the back of the hotel). However the room was designed for typical disabled people, not someone like my daughter, so she couldn’t use the shower chair for example (but bed baths were fine for a couple of days). The bed itself was a divan, and I couldn’t get the hoist underneath it, so I lifted her on the first night, which was quite dangerous after a long journey on very little sleep. I mentioned this problem at Reception the next morning, not expecting much, but during the day they lifted the bed using ‘Elephant Feet’ which I had never heard of before, and hey presto, we had a room that worked for us pretty well! So thank you Premier Inn, you really helped to make our stay with you as relaxing as possible given my daughter’s very specialist needs.

An elephant foot
Elephant Feet

Shrewsbury is a beautiful town, even during a rainy November weekend, with a population similar to that of Galway, but surprisingly it’s not a popular tourist destination, even though it has good transport links, lots of historic buildings, pretty cafes, riverside walks and small specialist shops, such as Roly’s Fudge, where you can watch the fudge being made..

Making Fudge, Roly's Fudge

We ate a lot and not just fudge! At gorgeous restaurants and pubs such as these:

We also enjoyed meals at home with the family, and B loved the cosy family atmosphere and being the centre of attention 😍.

Happy B in Family House

Of course I took B shopping too, to pick up some Christmas presents and gifts for the two young adults who stayed in Dublin. We even tried out the town’s Changing Places toilet, next to this gorgeous church:

Church, Shrewsbury
Gratuitous photo of the church because it’s much prettier than the toilet

So all in all, it was a great success, over too quickly of course, but now we’ve done it once, hopefully we can do it again …

 

Reasons to be cheerful 16.11.19

I’ve no good news about the bad news, so here’s some reasons to be cheerful instead. And yes I did organise most of them myself…

A surfeit of Zumba?

I went to three Zumba classes this week! On Monday and Tuesday they took place during the hour I escape from the house. Then on Wednesday evening B’s usual activity was cancelled, and she was getting bored and cross, so we headed out into the lashing rain for the local Zumba class around the corner, which she loved.

Some running too

On Thursday I went to Dublin’s Phoenix Park for a run with my running group, despite the bitter cold and threat of rain. Only four of us turned up out of the 2000 odd in the group and I remembered why I was there. It’s because if you value something, especially when it’s run by volunteers, you should show up when you can, even on the cold days, the wet days and the duvet days. Use it or lose it goes for services too – I’ve seen too many dwindle away until they died completely.

Phoenix Park Nov 19
The rain stopped for us and the sun came out

On Saturday I got a last minute opportunity to go to Fairview parkrun on my own 😀 – I do love running with my disabled daughter, but I am very tired at the moment, so I really appreciated the chance to run without a buggy for once. I did better than expected, only 14 seconds off my best time, the 9th woman, and the fastest in my age group, so I’ll take that 😀.

Parkrun Fairview 16.11.19
Pic courtesy of Fairview Parkrun

Quality Time with Eldest

Thursday night we went to the cinema to see Official Secrets, which we absolutely loved. I’ve heard very little about this film, but it’s a true spy story that’s stranger than fiction, with a stellar cast and a sharp script.

On Friday I brought her shopping, with both trips a belated way to celebrate her birthday, which was in September, but we’ve been sooooo busy …

And Finally

Today B and I met the always inspiring Ann Kennedy. Despite all her health problems, she thought of my disabled daughter during a recent trip to the US, and brought back some reusable drinking straws for her to try. That’s real kindness.

Have a great week xx

 

A birthday week fit for a princess #R2BC

My lovely 23 year old still loves everything pink, sparkly and princessy, so when the organisers of the inclusive Tymon Parkrun offered to celebrate B’s birthday one Saturday and asked for a theme, the first thing that popped into my head was Pop Princesses, so we went with that, and she had a wonderful morning with running in tutus (including me), music, presents, attention and cake too!

Smiley Princess Tymon
A beautiful photo block showing B looking very regal presented to us by Tymon Parkrun to commemorate her birthday run

Every princess needs to go to a birthday ball too, doesn’t she? So we did that on Sunday when we took part in a charity Zumba ‘ball’ with friends, and she head danced and laughed her way through the afternoon.

On Monday she enjoyed a feast fit for a princess with Breakfast at Tiffany’s Avoca with friends.

Another cake was enjoyed on Tuesday with her friends at her adult programme, and a day later I brought her to a preview of the amazing Wild Lights Display at Dublin Zoo, which she attended with the same group and her key worker. Sadly this didn’t go so well for her, once again proving my point that you can never take anything for granted with my disabled daughter, except that she usually prefers something familiar. So maybe she’d enjoy a return visit next year. Also I’d like to go 😀.

WIld Light 2019
All I saw of Wild Lights 😀

Thursday, Friday and Saturday evenings were quieter than planned, as my van was needed by another family member, but we did go back to Tymon Parkrun on Saturday morning to volunteer, and enjoyed a walk in the Palace Botanic Gardens with friends on Saturday afternoon.

What more could a princess want?

Head over to Lakes Single Mum for more reasons to be cheerful.

 

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 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

 

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

Screenshot 2019-10-10 at 15.18.27
My banner for one of next week’s protests 16.10 at 11am Leinster House. BE THERE