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 

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