Tag: daughter

Still Here

I’m aware that I’m neglecting this blog but a guy has to prioritise.

Life updates are coming thick and fast.

Heather is dating but I’ve yet to meet the lucky fella. She has late shifts at a bar in town and her steady day job on a toffee stall in town. Her degree starts in October so “something’s gotta give”.

Jo has started at a local college (16-18) and is settling. She has a bunch of new friends and a part time waitressing job at a golf club.

Gill and I are refurbishing the house while the sun is shining financially. It needed it. It’s surprising how things you use every day get tatty.

Ashley’s psoriasis is flaring again but he’s not fussed. His second year of High School (11-15) is going really well as he joins lunchtime clubs, sings in a choir and continues to charm.

Cerys is doing well at Primary School and has a teacher who uses twitter to send pics of the kids working. They have a link to Tim Peake too. The.school finally feels like they’re turning a corner (now the governors, principal and most of the teachers have been cleared out)

Work is harder as the firm, like all others, trims hours, positions and asks for more from all colleagues. Looking forward (a long way forward btw) to retirement. The world is changing, as it always does, and most of my life has been in a more understanding, simpler place.

Folk seem brash and self absorbed and (damn them) ever younger. Conversation which isn’t disturbed by a smart phone is becoming rarer now.

Our wifi router is a bit dodgy and the furore in the house is unbelievable. Thank goodness for mobile data. I just read a book.

 alan

I love the way he talks and hear him as I read. I watched The Lady in the Van and several of his Talking Heads and got hooked.

Reading is therapy for me. Unfortunately, the house is noisy, especially with Ashley’s bluetooth speaker disco habits.

He’s 12 now, by the way and huge. Scary to think I’ve blogged longer than he’s been around.

Over 13 years of this witter.

Must be more diligent though.

Trust you’re well. All comments welcome.

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Long day

Lordy, today was hard.

It was never going to be easy but …

I phoned the hospital and they said she’d normalised.

Which is good.

However, a visit to her house made us realise that diet is a real problem with this lady.

A receipt showed that on the night she was hospitalised she had been to the supermarket and bought a feast.

She had then gone home and consumed it.

Type 2 diabetes is not something you mess with.

No wonder her pulse was sky high.

I did delicately address this only to get the normal apologies and shame face.

It means nothing as she forgets such conversation quickly.

For a short while she was actually lucid enough to feel sad about her demise.

Usually it’s just denial. She wants to go back to who she really is.

She looked me in the eye and asked “David what can I do?”

It’ s hard.

She lapsed quickly, denying she’d been in for two nights, asking repeatedly for her purse which we have at home as it has £500 in it and looking, looking, looking for her keys.

The question of housing is upon us now. For the moment she is fairly safe where she is.

Strangely, for us things will get better as the dementia gets worse. All of this trying stuff will fade as she dwindles into herself forgetting Dad, forgetting me, forgetting.

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Today was also Jo(16)’s registration day at college. She was a little short of the grades she needed but the college were great at easing her into alternatives.

I have an app for booking taxis and this afternoon, as we left college, it failed as my bank decided to run security checks on my recent transactions. This involved a call by me and a tense few moments remembering what certain items were from their dodgy abbreviated statement descriptions.

Picking Mum up was delayed as the consultant was busy, the pharmacy was busy, the nurses were faffing around and not booking Mum out in any great hurry.

Getting home to potato ash was a blessed relief.

Oh, yeah, I’m reading again. Biographies, auto and otherwise. I’m reading Prince Philip, the early years and Rob Brydon, funny fella from Wales and will be starting Alan Bennett soon. Any recommendations?

Hoping for a lull in activity tomorrow.

No doubt life will go on.

Logistics Spaghetti

Large families come with a non-edible spaghetti-like organisation.

Last year we maintained 4 school diaries, Ashley’s medical appointments, Cerys’ medical appointments, Mum’s normal medical and dementia appointments, Mum’s home organisation and care team and Gill’s anxiety appointments.

The older girl’s are both at college (16+ and 18+) this year so more of their organisation is up to them. We still seem to be booking dentals and opticians though.

Fortunately for us, family is an organic process and will, with time, become less tangled.

I use a google calendar, there’s a whiteboard in the kitchen, letters on the fridge and as an indispensable last resort, Gill’s fantastic memory.

The girls contribute to the pen board – “if it ain’t on, we don’t know” is our maxim.

Add to this the normal day-to-day which includes repair and maintenance men for Ashley’s equipment and for the household machines, constant Amazon deliveries, school trip and uniform payments (all electronic now), food deliveries (I’m not going shopping!) and Lord knows what else.

As a list it’s long and scary but in reality it works.

Just.

Parenting a disabled child

My son, Ashley, has a list of disabilities.  Readers from my old blog will be familiar with the problems we’ve encountered and the challenges we’ve overcome.

Folk have asked how we cope: how we accommodate his medication, therapies, appointments, finances etc.

They’re also curious to find out about the “disappointment” of having a disabled kid: how we mourn for the child and man that could have been; how we feel when we compare him to his able peers.

They’re a curious bunch.

The short answer is based on perspective.

Basically, it’s “what else is there?”

He’s 11 now, soon to be twelve, so we’re not Newbies.

Much of the day to day stuff is simply routine and with three other kids and an elderly Mum we rarely sit and ponder our lot in life.

Gill and I communicate. These aren’t just words. When it comes to Ashley, everything is shared. Decisions are rarely made without a conversation, even if it’s by text.

This gives us a lot of strength and stability when it comes to trusting the other partner.

Mostly we see things coming. We know the creams that don’t work. We know how to deal with lazy or arrogant consultants or their registrars.

More importantly we know him. His behaviour is transparent to us so if he’s ill we know it.

The other important aspect of our lives is the family. The world no longer revolves around him as it did when we were first dealing with his conditions.

The fun that is six people in a house all with different characters doesn’t leave time to dwell on one person too much.

Our best coping strategy is Ashley himself. His a charmer, a cuddler, a cool DJ, a smooth dancer and has an infectious laugh.

This isn’t a blog about living with disability. Some bloggers seem to dwell on this.

We blog about what we know and this family is only partly about disability, so the blog reflects this.

I look forward to your comments.

Day 2

I think it’s important to keep in mind that life moves on.

We kid ourselves that it doesn’t. But look up and you’ll see lots of changes.

My little girl is going to university in October.

My timid daughter sang a solo yesterday. (so proud)

Part of the mire I found myself in was my fault.

The perspective I had was weighing me down.

Sometimes things change very slowly but they are always changing.

Getting stuck in the past is very destructive.

Unfortunately we cope by identifying with the past.

Never really been a carpe diem kind’a guy. Impulsiveness gets on my nerves as it underplays the importance of responsibility.

I’m more “stop and smell the roses“. Dig in and live life with grit and determination but don’t let it weigh you down. Appreciate the blessings you have, even if it’s Mum’s Dementia knocking off for a day or a kid who finally, finally tidies her room.

Laterz

 

A New Blog

Okay, welcome to the new blog.

My old one with almost the same name had to be locked for personal reasons.

This one will definitely carry on in the same vein for as long as I have stuff to post.

To the uninitiated, I have been blogging for over thirteen years, initially on 20six then on various platforms, some of which died and some of which were just boring.

I settled here a few years ago and built up a nice hit rate of 200 a month, making friends as I went along and letting people into the nonsense of our lives.

In summary, I am a 50+ Dad of 4, happily married to my Gill.

The kids range from 18 to 9 and Ashley, whose 11, is profoundly disabled. I’ll do a tab for him soon.

We live near Manchester in England and like it. Even the rainy days.

As for posting, I will rant and whine a bit but I really do treasure your input.

Not sure how I can drag my buddies over here but I hope they all make it.

Right, better get on with setting up.