A new toy and other reasons to be cheerful

It began with a torn page from a Sunday paper. Life was looking up in the summer of 2017, and I was determined to be brave and try new things. Also I needed a way to check how fast I was running, so when I read about this Kickstarter project for a budget smartwatch, I took a chance and backed it. As you know, it paid off, and I got my smartwatch in time for Christmas. It did everything I wanted and more, and quickly became an essential pice of kit. No more missed calls or messages, which can be so frustrating when you’re trying to organise something important for your children. So I was not happy when the watch broke for good last week. But I was happy when I found a bargain replacement that looks a bit like an Apple Watch and costs just £70. It also has great reviews, the battery is supposed to last for 45 days, and it appears to do almost everything on my wish list. So far I’m delighted …

In related news the wireless earphones that were free with my first smartwatch are still working, even though the watch is not.

Reasons to be cheerful 13.4.19

And I’ve a few other reasons to be cheerful too:

Friday was the last day I knew for sure I would have an empty house. So I made the most of it by tackling a head wrecking house maintenance issue. But during the breaks between stages I sat down and read a book instead of rushing around doing other chores.

With worries about the future mounting again, I also took a break earlier in the week to go for a short walk along Dublin’s seafront to clear my head.

A lovely message from a reader with a severely disabled child who found my blog  and said it gave her comfort for the future.

Oldest and youngest chose takeaways for dinner last Monday giving me time to bring B to the Rainbow 13+ Social Club in the evening, which she loved.

Our wonderful home hairdresser made us look presentable again.

When the health service gives you a week to respond to a letter or you will be struck off the waiting list and your busy but kind-hearted GP rings to make sure you’re not away and are able to respond.

After a long break, it looks like I will get two trips out to the cinema over the next couple of months with eldest and then a friend.

Finally yesterday was a wonderful day of inclusion for my disabled daughter, beginning with the park run at Tymon and ending with a 50th birthday party. I can tell you she went straight to sleep last night!

R2BC at Mummy from the Heart 

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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 😉 

 

If all else fails, go shopping

I’m not promoting pointless consumption of stuff here, honestly. It’s my disabled daughter you see, she’s getting more demanding. She’s no longer content with quiet evenings involving videos and chatting to me as I potter between the sink and the cooker and the bins and the washing and well, you get the picture.

But there is one activity that always keeps her happy, and that’s shopping. She will brighten up as soon as I start to put her coat on, then laugh in happy anticipation as I push her and her wheelchair out of the house, through the two gates and into the van.

Once we get going, she is in charge of the music, and will head dance enthusiastically to her favourite songs — or give out loudly if a tune she dislikes is played.

The excitement builds up even more when she recognises the store or shopping centre, and if it’s big, bright and busy, well that’s even better..

(And as many of you have realised, she is very good at letting everyone within earshot know exactly how she feels!)

However daily shopping trips in the early evening rush hour traffic are not exactly an efficient use of time, and can be tiring and annoying, but I have realised there are benefits for the whole family.

I have fond memories of the days when I could do one big shop for the week. When I was in charge of the menu, the food and what everyone ate. But now my three young adults eat different things at different times, and forget to tell me when stocks of their favourite foods are running low. So I need to buy food and other essentials on most days anyway: if B and I shop in the evening, I have more time during the day to get other things done that she cannot help with, or would not enjoy. It’s almost a win/win. So I think four nights of shopping this week counts as a reason to be cheerful, don’t you?

Head over to Mummy from the Heart for more..

Screenshot 2019-04-05 at 21.58.55

R2BC at Mummy from the Heart 

Looking for Silver Linings

I’m afraid it’s been another of those weeks, and my heart goes out to several friends who have suffered loss and bereavement, but I’m determined to find some cheerful silver linings and turn some of the bad news into good…

The bad news is I don’t have the time – or interest – to do the garden any more and so it looks like this ↗️.

The good news is it means I’m helping to save the bees apparently.

The bad news is I will have to miss my beloved Tuesday Zumba class for the next few weeks.

The good news is it’s because I’ve finally got some counselling appointments. And I hope to get my Zumba fix from another class or event.

The bad news is my ribs still hurt a bit.

The good news is I have a great excuse not to bother with the vacuuming. I have to ‘rest’ and not do activities that hurt me.

The bad news is the beautiful disabled friendly bungalows B and I saw this week are on sale in the wrong place, at the wrong time. Probably.

You see I’m coming under pressure to defer any house move for now. It is difficult to turn down the chance to live somewhere that B seemed to love (see photo above), with everything we need for the future – apart from a ceiling hoist – already in place. Admittedly I am not convinced by the location – it’s a 20 minute drive from anywhere we might want to go, and public transport is almost non existent.

The good news is we enjoyed a lovely relaxing afternoon in the country including a pit stop at the local cafe where we felt very welcome.

The bad news is I’ve been super busy this week, and am feeling completely overwhelmed again

The good news is that between all the appointments and usual madness I am managing separate outings with each of my young adults. Even if they are for activities like house hunting that may come to nothing!

Let’s hope that next week is better, and head over to Lakes Single Mum for more reasons to be cheerful.

R2BC at Mummy from the Heart 

Two toilets in One week! #R2BC

It’s been another busy fortnight with 16 appointments of various kinds, plus fun activities at the weekend, including lunch out with friends, which B now really enjoys. One of those involved our first time to visit a commercial Changing Places toilet and I was delighted with how easy it was to use.

B got a new lightweight GaryB Wheelchair Blanket for Spring (just seen in photo) as her legs get so cold so easily now that she needs more than a pair of leggings covering them when she goes out.

I’m injured, which means enforced rest and filling the time with other things to ensure my two youngest do more than just look at screens. Starting by volunteering at parkrun tomorrow, instead of running..

Today though was a very special day as B and I headed out to North County Dublin to the official opening of the new premises of the hugely successful Remember Us Club that provides a social outlet for some 200 disabled children and adults, as well as their siblings and families. In a stunning achievement, they have raised enough funds to buy and kit out a permanent home for the club and all its activities and events. And it also has a proper Changing Places toilet, so we had to check it out!

We also got to meet a number of families who used to attend the Rainbow Junior Arch Club that B and I have been spending our Saturdays afternoons at for the past 18 years… It was lovely to catch up, and thanks to R for all your help and support and bringing over some badly needed coffee…

So that’s it for this week, more reasons to be cheerful over at Lakes Single Mum. Have a great week xx

Remember Us opening collage

R2BC at Mummy from the Heart 

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…

 

 

Thanks Dundrum Town Centre #ChangingPlaces

One minute B was chatting and smiling at my friend and I, as we all enjoyed a leisurely lunch, and then my disabled daughter’s mood suddenly changed. That usually means one thing: she needs the toilet.

Normally I would make a mad dash to get home before she has an accident, but not today. You see we were visiting Dundrum Town Centre, which recently became the first shopping centre in the south of Ireland to install a full Changing Places toilet. This is an extra large disabled toilet with the addition of a ceiling hoist and changing bed which means I can help my daughter to use the toilet without risking injury to either of us.

It was our first time to use a commercial facility, and I was very impressed: it was spacious, very clean and there were clear instructions on how to use all the equipment.

Getting in was not so easy – you have to obtain and return a special key via the information desk, and it’s NOT the disabled toilet key that I already have. You can buy the one for the Dundrum toilet from the same locksmith, details in this link:

https://www.dundrum.ie/visitor-info/shopmobility

I also had to ask where it was (I should have checked the above link!) and I found it a little cold as there was no radiator.

Apart from those minor issues it was a wonderful experience. I’m not exaggerating. Even at home I’m pulling and adjusting and bending and sweating every time B uses the toilet.

We were in and out of the Dundrum facility in about 10 minutes, and I didn’t feel the need for a lie down afterwards!

It’s also made me even more determined to find a home for B and I where I can install a ceiling hoist, because if I find it hard to manage her physical needs now, how difficult will it become in 10 or 20 years time?

And if anyone doubts the need for these facilities,  I can tell you that when we emerged there was another family waiting outside to use it…

So thank you Dundrum, and I hope that every other shopping centre follows your example soon.

 

Reasons to be Really Cheerful 8.3.19

Everyone in this family is doing better at the moment, and I have managed to be really cheerful at times over the past fortnight.

I’ve enjoyed more sleep, more control over my time, so I managed to organise a passport for B, get to the dentist and optician, choose some badly needed glasses for night driving, and begin some major and important projects.

There was a trip out, coffee and lunch, all with different friends, one of which involved proper make up, straightened hair, and my good coat!

Saturday nights will henceforth be film nights with youngest, and so far we’ve watched The Princess Bride and The Godfather.

Most entertaining moment was eldest getting a cheque in the post and asking me what she was supposed to do with it.

I’m making the effort to whip out the mobile phone when I spot something I like and getting a few one shot wonders like these:

I wrote something about changing the world and apparently it has already changed someone’s behaviour – as they say, we may not think we have the power to make a difference, but actually we do, and that’s a very cheerful thought indeed.

Have a great week xx

R2BC at Mummy from the Heart

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,

 

Nothing to Say?

I was going write a post about how I can’t write anymore. There’s lots of reasons: I have to leave so much out, I’m no longer sure about sharing our lives, and I can’t tell you much that’s new in any case.

As you know I won a battle, but the aftermath means that youngest is still the focus of family life at the moment. Plans have been disrupted and many meetings attended, but in between there have been little treats – a walk in the cemetery, finally going for coffee with my running group – and hours of calm at a time, which are very welcome. Still it feels as though the real action is happening on a big stage, yet all I can tell you about is how the audience respond, and mundane tales from the box office and stage hands.

But then this week I was reminded that most of the blogs I read are the ones rooted in personal stories, and the everyday lives of families that I have followed with interest for years, so perhaps I’m wrong, perhaps readers crave relatable details of ordinary lives too?

So instead of letting this blog slide, I do plan to update it when I have time, and especially for reasons to be cheerful posts. So here are some for this week:

My disabled daughter B has a new PA who is in a girl band and likes cake and shopping. What could be more perfect? As before, the PA will be bringing her out on Sunday mornings when I’m busy with chores.

A new battery has arrived for her temporary power chair so training can start again. This is important, because no decision will be made on her final wheelchair until her team have decided whether or not she is able to use a power chair. Until the decision has been made, it’s risky to buy a new van (which we need) and it’s also difficult to make any decisions about a new house until I know the size of chair that has to get through doors and down hallways.

B’s communication device – a big Mack – broke in 2018, but she should get a new one today. In case you’re new here, the big Mack allows her key worker to record a message about her day and then she presses the button when she gets home to pass it on. I then record a message about her evening for her to tell her pals at her day programme the following morning.

Last week I brought down some old CDs from the attic, to feed Bs need for music in the car, because there’s STILL no FM stations that play my kind of music! Anyway we popped up to Tesco yesterday, and I discovered that she is a huge fan of Irish rock, and was noisily dancing all the way there and all the way back to the likes of Thin Lizzy, Van Morrison and An Emotional Fish 😀.

We also tackled the scary challenge of getting passport photos done on a Sunday afternoon in town: sadly none of the chemists could help because of B’s needs, but a photography shop did a great job. Such a pity that smiles are no longer allowed though!

Last weekend also saw B and I back doing Parkrun, though I couldn’t get her to smile for the camera: I’ve adjusted her Moviecol as I think she has been struggling with constipation, something she hates, thought it never stops here enjoying cake 😍.

Have a great week xx

Reasons to be cheerful 22.2.19

R2BC at Mummy from the Heart