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

 

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.