Checking In…

Just checking in after long absence – sorry haven’t been as engaged as usual of late…

But I have a proper excuse this time – I’ve been on holiday! :)

Just got back from a lovely two weeks in Langkawi with the family, for the occasion of my lovely Dad’s 60th birthday…

It’s been the first time in a long, loooong time (if ever??) that I’ve felt truly relaxed – I’m generally pretty rubbish at winding down and switching off, but somehow the island worked it’s magic on me, and for once I was able to properly turn off brain and just chill the fuck out…

Didn’t physically “do” much other than eat, drink, read, go for massages, spend time with the husband and family, and relax on the beach – aside from the one day’s diving we did while out there (though the less said on that the better – let’s just say a decidedly dodgy tum and wetsuits do not mix well!).

All good things must come to an end eventually though – but in the meantime MIL amazingly survived our absence intact (with carers and friends in daily to plug the gaps…), and am actually even looking forward getting back to the office on Monday! I’d left work on a super high note of an absolutely glowing initial performance review the day before we initially flew out, so – long story short – they seem as happy with me as I am with them at the moment!

Hooray!!!!!!!!!!! No need to point out how happy that makes me, after that godawful few months with that toxic last boss / firm…

And will be an auntie any day now too…

Touch wood, this uncharacteristic good patch will last!!!

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Happy New Year!

Happy New Year to all of you! How did your NYEs go…?

Our plan for yesterday was to chill at home just OH and me with some prosecco and one of those M&S meal deals, which we did, but then somehow ended up embroiled in a massive but ultimately totally pointless row afterwards over the fact that I had (apparently) spent too much time responding to well-wishing texts and emails rather than talking to my husband! Resulting argument actually went on from about 9pm till the fireworks started at midnight – but we’re both over it now!

Glad to say goodbye to 2015 in many ways – something of a mixed bag of a year really… Highlights were a weekend away in Venice and (finally!) passing my driving test. Lowlights were that holiday from hell in Sharm back in August and, of course, those absolutely soul-destroying four months dealing with muppet boss at evil consultancy firm. Then a definite surprise highlight at the very end of the year in terms of engineering a relatively quick escape from there and starting something new the other week, which is much more up my street!

MIL – if she were aware of it – has had a much worse year. Was it really just this year that she started out still driving, semi-functional at least, and in her own home…? She has ended the year a non-driver after the DVLA finally revoked her license (I doubt she’d even be able to open the car door and start up the engine, if you asked her to now), and in assisted living – just managing the move there being another defining event of 2015 for us. Now she lives friendless in amidst a constant stench of cat litter, rotting food from the fridge and stained underwear (and this in spite of daily care visits from agency and OH) – it’s no life at all really, but she somehow still stays chipper…

I have a feeling, at this rate, that 2016 will finally be the year that OH at last accepts that care home time is really not very long away at all…

Roll on a hopefully calmer 2016 for all of us, with hopefully less upheaval! Wishing everyone strength through the future trials and tribulations that likely face us in the year to come, but hopefully some happiness, love and joy too… xx

 

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Post-Christmas Check-In…?

Hi all,

Just a post-Christmas check in from me to see how we in the dementia blogging community have all fared…? Hope everyone is still standing…?!

We stuck to this year’s significantly modified plan of forgoing the usual giant (not to mention bloody amazing) family Christmas at my absolutely lovely mum’s house (would have been far too much these days – for both MIL and us – to haul her with us the whole, looooong 90 minutes there and back again in one day, MIL inevitably repeating herself every 30 seconds or so the whole damn way as to where we were going, who we were going to see, had she met them before etc…).

Such a shame, given that my mum and mine have given her the most warmest of welcomes over the last several years, and truly treated her as one of our own (which she is, I suppose, but you know what I mean…). I will be forever grateful to my own darling mum and wonderful family, each one of them, for going so far above and beyond each year – even if from here on in it’s no longer possible, due to MIL’s deterioration in only the last 12 months…

Instead, we had MIL at our place on Christmas Day just the three of us, then spent the subsequent few days travelling and visiting between my own various family members without her (OH being an only child, there is pretty much no one left to visit on his side – and mine are infinitely more fun!).

MIL had a lovely time on the day itself – she tucked away all of my Christmas lunch (a great success – despite being my first ever!!) and was truly overwhelmed by the gifts we and our group of long-standing family friends had bestowed upon her this year. I don’t know whether seeing children or those with dementia are most touching to watch opening their gifts – MIL was so just very, very grateful…

Some definite hints of sadness though…

On realising she hadn’t done presents herself this year (again), she was repeatedly reprimanding herself for being “so useless”, and when I replied “Isn’t it lovely, MIL, how many people love you and are thinking of you…?” (meaning the family friends), she said “I’d thought they’d all given up on me by now…”. We’d taken her to see them for a pre-Christmas lunch only last week – they are very much involved with all of us still (albeit in a more Alzheimers sensitive way these days…).

Overall, a survivable Christmas Day (if a quiet one) – was soooooo lovely by comparison to see my whole bonkers hoard (including loads of relatives I’ve – to my shame – not seen for a while now too) on the 26th / 27th / 28th! I was also invited to feel future nephew (due in Feb – had I mentioned…??) kick!! I’ve never done that before – I was so very touched…

Counting my blessings right now to have (MIL aside) the family I do – one of real fun, laughter, love, and now new promise for the future…

But, oh, MIL!!! By Boxing Day morning, all memory of Christmas Day had been completely wiped from her mind, and she has had the right hump over multiple phone calls every hour or so since asking if we were seeing her that day or not. The word “no” was not well received, put it that way… We will be seeing her tomorrow – but in the meantime I do have a family too, and we did sacrifice a proper Christmas Day to make sure she was fed, watered, gifted to, and not on her own!

Arghhhhhhhhhhhhhhhhhh.

I know, I know. She has forgotten it all, and therefore feels we haven’t seen her at all over the Christmas period – so is all resentful.

I know she can’t help it – but, still, I could scream!!!

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Merry Christmas / Update!!

No poem from me today, I’m afraid, but just a quick note to say Have As Merry A Christmas As Possible Under the Circumstances!! I hope you will all have a lovely day – even with dementia in the mix…

As for me, I started my new job last week, and so far am LOVING it. I don’t want to tempt fate, as there’s a long probation period to go and it’s only early days yet, but so far I am really happy – and (touch wood) so do they seem to be with me!

Really nice people, great manager, fun vibe, interesting work, and a much missed “feel good” factor in terms of working for a Not For Profit. Don’t want to jinx it, but really feeling like I’m fitting in nicely :)

Needless to say, after the last horrible four months on the work front, I am over the bloody moon!!!!! :) :) :)

Anyway, Seasons Greetings once again -and hopefully I’ll be back with the odd poem or two in the New Year!

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Cassandra Syndrome

I saw the signs, I heard the call,
Saw all the symptoms – large and small,
Sensed the future on the cards,
(Let’s face it – it was not that hard…),
Saw dementia’s face with clarity,
But like in the Greek mythology*,
In this knowledge, I stayed alone,
Just like with Cassandra Syndrome…

Online help and advice I sought,
Prepared myself for the onslaught,
I knew the signs, I knew the score,
Like Churchill predicting the world war,
But my husband in the main,
A “peace in our time” Chamberlain,
For no one wants to hear you “moan”,
When you have Cassandra Syndrome…

You see things getting slowly worse,
When you have the Cassandra curse,
But try telling that to your man!
An ostrich’s head stays in the sand…,
The warning siren went ignored,
No one takes your advice on board,
Alarms dismissed as “overblown”,
When you have Cassandra Syndrome…

All I predicted came to pass,
In this dementia journey I forecast,
None so blind as those who won’t see,
(Too late now, they agree with me…),
So long disbelieved and dismissed,
A lone voice calling through the mist,
Destined to face the facts alone,
My life with Cassandra Syndrome…

 

*   The Cassandra metaphor (variously labelled the Cassandra ‘syndrome’, ‘complex’, ‘phenomenon’, ‘predicament’, ‘dilemma’, or ‘curse’) occurs when valid warnings or concerns are dismissed or disbelieved.

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Vini vidi vāsī

Tired of being pimped out by the man,
Feeling like a corporate courtesan,
I can’t take the bullshit any more,
Disillusioned now I know the score,
This consulting game is not for me,
I’m gone – vini vidi vāsī!

A big boys’ club – great Eton mess,
Comes with the territory, I guess,
But before each project (which is worse),
They ask if I’m getting pregnant first!
A culture of misogyny,
I’m done – vini vidi vāsī!

These wannabes are too far gone,
All spouting buzzwords and jargon,
Deltas, drivers, accelerators,
Step-changes, road maps, motivators,
Not even with a sense of irony!
I’m out – vini vidi vāsī!!

All so eager to climb the ladder,
It’s The Apprentice – only sadder,
Competing always to stay late,
These are the true rats in the race,
No friends, no fun, no family,
No way! Vini vidi vāsī!

Here sharp elbows are the norm,
Each new start pressured to conform,
Go home come eight, you’re seen as shirking,
Over-dependence on “networking”,
Need to leave for my sanity,
I’m done – vini vidi vāsī!

And, oh, the chaos! Utter torture!
Ducks paddling madly underwater,
Beneath the glossed corporate veneer,
It’s inefficient as hell down here!
Lastminute dot com is not me,
I’m out – vini vidi vāsī!

It’s never substance, only style,
Fancy Powerpoints and Excel files,
That’s our output – nothing more,
Formatting slides is such a bore,
No “added value” I can see,
I’m gone – vini vidi vāsī!

The clients pay us through the nose,
And yet the Emperor has no clothes!
To blag it all just feels so wrong,
Make it all up as we go along!
Who knew I had integrity?
I’m through – vini vidi vāsī!

And my boss (already mentioned here),
A mad workaholic too, I fear,
No scruples, morals, people skills,
One of those who smiles as he kills,
This is not what I want to be,
No thanks! Vini vidi vāsī!

It’s not been a complete dead loss,
Thankfully there I came across,
One lovely girl – a true good friend,
It’s turned out for the best in the end,
No “what ifs” that could bother me,
Still tried! Vini vidi vāsī!

I came, I saw, I conquered here!
On resigning, my boss made it clear,
If I would stay, there’d be more pay,
Thanks, but no thanks! Just no way!!
For I’ve got great new job in the can!
Veniam, videbo, vincam!!!

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Blind Leading the Blind

Carers, carees – we seem to spend the days,
Trying to navigate this dementia maze,
Each with health and sanity erroded,
Both trying to find the way blindfolded,
Each wanting to help the other through,
Yet neither knowing what to do,
Both locked into this toxic bind,
It’s just the blind leading the blind…

We pay our visits to the GP,
In hope that of some help they’ll be,
They listen, nod – some sympathise,
But where it counts are not that wise,
For still the best that we can get,
Is the “disease-slowing” Aricept,
A cure’s still lagging way behind,
It’s just the blind leading the blind…

So, having paid our taxes to date,
We look for some help from the state,
Only to find another source of stress,
The bureaucratic mess that is SS,
Who even when they’re on the ball,
Don’t offer that much help at all,
And if a support worker’s assigned,
It’s still the blind leading the blind…

In desperation, we search online,
Communities of the afflicted find,
Practical advice, a listening ear,
That’s what we hope to find on here,
It helps to not feel so alone,
But we’re all fighting battles of our own,
And I don’t mean here to be unkind,
But we’re just the blind leading the blind..

There’s no end to the daily grind,
No button which could time rewind,
Each and every effort undermined,
No way out that anyone can find,
Life of carer and caree so entwined,
Yet each in their own way lose their mind,
To our fate we all must be resigned,
It’s just the blind leading the blind…

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Wedding Rant….

Sorry to have been AWOL so long – have been busy at work and pulled my first mid-nighter in the office on Tuesday, which wasn’t fun but probably scored me a few brownie points at least! Still recovering from that one tbh.

Anyhoo just here for a rant. Had a family wedding yesterday – MIL’s god-daughter. Thank God it was local so not far to travel, and the wedding itself was beautiful.

But oh, MIL, MIL, MIL.

Cue about a phone call every ten minutes from Thursday afternoon onwards about what time we were picking her up, who was getting married, why hadn’t we told her, what was she wearing (we had the outfit hanging up for her) etc etc.

‘Who is getting married – why didn’t you tell me etc’ theme carried on right till we were sitting waiting for the bride and groom till they walked down the aisle. OH going nuts and getting angry all throughout – which wasn’t helping.

After that cue endless fretting about when we’d be sitting down for a meal, and then whinging (loudly) throughout all the speeches as to when her dinner would be coming (they did the speeches first). You wouldn’t think it was her beloved god-daughter getting married at all.

Had to be restrained from drinking all the red wine out of two bottles on the table for everyone – and then moaned endlessly about that.

Took her to the toilet (for hundredth time) and she was woozy on the little bit she’d had – tripped on a step and somehow I managed to on instinct lean forward and grab her before her face went smack down on to the gravel. So feeling a bit heroic over that.

Took her home at 6pm and came back for evening – only to be called back an hour later by the neighbours as she’d gotten herself confused as to where she was (think she might have thought she was at the wedding hotel?) and where we were. Settled her and didn’t go back as by now too overwrought.

She’s called ten times within the last hour this morning asking what time we’re picking her up for the wedding today – everything from yesterday completely forgotten…

Yes, I know, I know – all par for the course with dementia, and she can’t help it. It was an event out of routine, which always knocks her massively for six – before, after and during.

But even so – AAAAAAAARRRRRRRRRRRRRGGGGGGGGGGGGGGGHHHHHHHHHH.

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Who…???

Mum-in-law doesn’t “know” me – I’ve said this before,
Not my job, age, nor degree – she’s no clue any more,
She still “got” I was a relative, in any case,
But now – for the first time – she’s forgotten my face…

She was over at our house for dinner last night,
To be fair, I could tell she was tired, not quite right,
And yet it still struck like a bolt from the blue,
When she turned to me and said, “Is Miss Merlot coming too”?

Tried to brush it off, but she asked three more times,
Not suspecting at all that the name here was mine,
I said, “That’s me, MIL” – she replied, “Oh, that’s true!”,
Who’d she think I was before then…? I haven’t a clue!

In my little life, she has loomed oh so large,
These last five years – the defining factor by far,
And so, yes, it stings a bit – of that you can be sure,
That so quickly and easily I just slip out of hers….

I know that tomorrow she will know me again,
And it was not her intention to cause me this pain,
I was the last into her life, and so – without doubt,
It stands to reason, I’ll be the first one out…

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Rock

When I come home full of bubbles and beans,
Buoyed by the minor triumphs of my work day,
I can’t wait to come home and fill you all in,
You show your love and pride with a vocal “wa-hey!”.

When I come home spitting venom and bile,
At some stupid triviality that has come my way,
I know that I’m safe just to vent all to you,
Of course you agree fully with all that I might say…

When I come home shattered and horribly late,
Stressed out, under pressure, nearly out of my mind,
You’re on hand at the station, ready with TLC,
Once home you make dinner and pour me my wine…

Whatever the day and whatever my mood,
Whether I’m happy, tired, angry or sad,
You’re my true retreat at the end of the day,
My rock and my refuge – and of you I’m so glad…

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