Update on Emergency Assessment

RESULT!!!!!

And hoorah for the private care agency (PCA – abbreviation not agency name) – truly worth their weight in gold.

Sooooooo following on from PCA’s direct contact with SS and epic talking-to delivered, the emergency assessment happened today with Social Services with a member of the PCA present, who knows and understands MIL best, and was able to detail all the risks – including the drinking of candle wax (or possibly shampoo, on further inspection).

By all accounts, MIL flipped out; there was rotting chicken in the cupboard under the sink and off milk in the cupboard; she couldn’t work the oven; the flat stunk of cat litter and was dirty; the only edible food in the house was cornflakes; and MIL failed the capacity test miserably. In the end MIL started screaming in their faces and kicked them out.

So all in all, exactly what we needed to move things along at this stage – sad to say.

SS now fully agree that 24/7 care is required and are escalating this internally.

PCA have got the impression from some of the conversations that previous SW we were assigned (the god-awful one) is not on a/l but has left or is leaving, and SS is now volte-facing so hurriedly to make up for all her previous mistakes.

So it seems things are finally moving, and in the right direction at last. Apparently the aggression she displayed though means she has been put in the ‘challenging’ category, so any future home will have to be equipped to handle that too.

I know we have yet another long road ahead in finding / approving / financing etc wherever she moves to next, and this is just the phase of another chapter…

But right now, I’m so, so, sooooooo very very relieved. I’d say you wouldn’t believe how much, but I know you all do.

Thank you all for being there up to this point. I’ll check in once I know more.

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Klaxon – something is actually happening!

Soooo, after months of agonising limbo with my MIL getting steadily worse and SS taking about 6 months to put a care package in place (2 x daily visits – which we’ve protested as insufficient, and weeks on still isn’t actually in place yet), there is actual movement now as I type…

Background: the last two weeks have been very worrying. MIL suddenly stopped providing access to the carers, either through not being able to work the buzzer on the flat, or refusing to buzz them up.

This was the result after ten days of partial access, as fed back from our amazing private care agency:

I went to see Mrs M this morning and I was concerned about her level of confusion. She was getting quite distressed saying ‘why can’t I do things? Why am I so confused all the time’? These were phrases she kept on repeating. Mrs M only had a packet of peas in the fridge (which she was feeding the cat) and I found a pint of milk in the cupboard. Mrs M was also distressed because she had no money in her purse and she couldn’t remember how to withdraw cash, or even if the bank would give her any. I took Mrs M to the bank and she withdrew £50, she was then worried this wouldn’t be enough, I assured her that it would be, she did seem a little calmer once she had some money.

Awful as it sounds, we didn’t know anything about money / food situation (you might remember that until now we’ve had the exact opposite problem, with massive food and money stockpiling). She didn’t call us to let us know at all either, which in itself is massively unusual – she will call in a flap still if a mere lightbulb needs changing. Nor had she mentioned any lack of food or money when OH had popped round in the week. Needless to say, we have since stocked her up for the time being, and will keep a better eye going forward.

On the next visit, the carers managed to get through the door, only to be thrown out again:

On Saturday morning the carer had a very difficult care call with Mrs M. First of all Mrs M was fine with The carer but as soon as The carer asked Mrs M if she wanted to go to the shops to get some milk and tea bags Mrs M turned on The carer (she had no milk in fridge or tea bags in cupboard) . Mrs M became very agitated and angry with the carer. Also Mrs M cleared the cat litter box with her hands. The carer encouraged Mrs M to use a spatula and to wash her hands but it made things worse and Mrs M angrily asked the carer to leave. She managed to complete 40 minutes of the care call but with great difficulties.

All of which I’ve flagged to a million different people at Social Services, as our Social Worker (the useless one) is on annual leave (predictably failing to set up her out-of-office before she went).

And just today I got a call saying that the carer had found MIL drinking what she suspected to be cleaning fluid (ok, not bleach, but something cleaning fluid-y). While she seemed fine, the care agency called a doctor – no adverse reactions after an hour though, and it didn’t seem that she’d drunk much.

The manager of the private care agency then called Social Services directly (as opposed to going to us with their feedback) and professional-to-professional flagged this and some other pretty major risks (walking in front of traffic, touching cat’s poo and then her food, burning self on stove etc.) pretty firmly it seems! (All these risks had already been flagged, but by us mere mortals as opposed to fellow carers.)

Social Services now profess themselves to be “concerned” at this information (as – presumably – opposed to “indifferent” previously), and are going back on Thursday with the private carers to do a reassessment!!

This is really good news, but awful at the same time. Poor MIL. My heart breaks for her reading some of these messages.

I have also rang round all the several care homes for which MIL is on the waiting list to see when a space might become available – SS or not, it’s time for residential care.

Isn’t it…?

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Still surviving…

Anyone still reading…? Apologies for checking out, and not coming back with any new poems – been quite busy at work of late!

Sooooo, on the dementia front, things rather got worse since my last post before they got better – though that’s not saying much really, still in the same old limbo here…

OH started cracking up again (I think I’ve referenced his 2013 full-on breakdown on here before…?). Same symptoms – random sweats, shakes, panic attacks, chronic insomnia, episodes of losing the ability to think or physically coordinate properly, a couple of instances where he thought he was going to die, etc. Not pretty, and extremely worrying.

I said back in ’13 that I couldn’t go through that all again a second time (picking up the pieces after a breakdown – emotionally, physically, financially, and in terms of caring for him as well as him mum while it lasted), and I still don’t think I could have done. Had it not been for all of this coinciding with Brexit (potentially cutting off the escape routes), I was sorely, sorely tempted to get my old job in Europe back and just draw a line under the whole 8 years (5 years with dementia in the mix).

Fortunately, he acted on my instructions to get himself off to the GP and – having been on anti-depressants, anti-anxiety and blood pressure tablets for the last month or so – is much more himself, and we’re finally finding our way back to each other again. He’s made a conscious decision to change for me and for himself on a lot of fronts, and the difference is quite palpable – long may it last!

This includes a commitment to sell the house (in trust to him and therefore once an absolute taboo subject), should it come to it. I’d hate to do that to the current tenant (newly single mum – seems lovely), and am still hoping we can come up with a deferred payment solution for the time being instead.

In the meantime, MIL continues to go slowly but surely downhill – we went through a period of about 3 weeks of semi-incontinence and her smelling a lot of urine, but this seems to have abated lately.

I haven’t seen her hardly at all myself – I just can’t bear to be around her any more, sad as that sounds. In fact, I don’t think I’ve seen her since she turned 80 over a month ago – OH is still doing the dinners and the more or less daily visits though, so she’s not going short.

Instead, I’m doing most of the liaison with Social Services, who are now on the scene but are about as useless as a chocolate teapot – the woman we’ve got is a virtual illiterate who seems to have no sense of perspective or professionalism whatsoever, and in the 4 months we’ve had them involved have got nowhere nearer getting a care plan implemented than at the start. Needless to say, I am feeling pretty murderous on that front.

Anyway, that’s it really on the home front – work is going really well and am still happy in the new job, which is really positive. Also have a new wee nephew, who I’m enjoying seeing getting bigger and more of a little person by the day!

Hope all is well as it can be with everyone else still tuning in…

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Oh For Fuck’s Sake…

Argghhh.

So in addition to all the usual MIL “issues”, this is the latest turn of events…

For context, we moved MIL to assisted living last year, where she is a private tenant. Her old house, after much renovation, is rented out to cover the costs of her current rental (and go towards future care homes fees). OH and I (but mainly me) “manage” both tenancies (MIL would be utterly incapable), but don’t get any financial benefit from it – just the stress, of which there has been a shed load of late…

In the last week, both tenancies seem to be suddenly going to hell in a hand basket – both due to the seeming family curse of plumbing (see ‘Great Flood’ issue of 2012!). I’d ask what are the odds, but in our case, the odds somehow always seem to be stacked against us…

Not-so-short story is that the other week, the water pump at MIL’s AL place conked out – cue week-long meltdown on MIL’s part at lack of hot water (including repeat abusive rants towards House Manager, whose job it isn’t to resolve) as we scrambled to sort it out (plumber needed to come twice, source parts, etc – not a quick job, but she couldn’t remember he’d ever been, so thinks nothing is happening to fix it). Not helped by the fact that AL landlord (son of the man who owned the flat) is completely MIA (not responded to any of our many phone calls or letter for two weeks), so the only option (given MIL is nigh on 80, vulnerable, and without hot water for two weeks – plus growing increasingly unmanageable as a result), has been to have the plumber in to do the work and settle up by deducting the cost (currently on OH’s credit card) off the next month’s rent – that’ll get him in contact, I’m sure, and then it will all be disputed after the fact, no doubt!

In the meantime, new tenants move into MIL’s old place yesterday – and (you guessed it!) – their hot water is gone too! We’d paid £2k last year to make repairs to the plumbing (again, still all on OH’s credit card – money he can ill afford) beforehand, and the hot water was confirmed by the estate agent as fully working just last month (unless they were lying to get the next set of tenants in?). So now we have angry tenants (last thing we ever wanted), are in the dark about what’s happening as the estate agency never answered all our follow-up calls over Saturday to confirm if a plumber had been dispatched yet, and now it’s Sunday and closed, and probably have another huge plumbing bill yet to face…. Great.

Then there’s the ongoing saga with the the first disastrous tenant, who (as it turned out) suffered from mental illness (all the estate agency staff were scared of him, as he’d keep turning up at the office stinking of hard liquor and screaming irrational abuse etc) and – just as we had agreed to start eviction proceedings against him – disappeared off the scene without giving notice (only found out when the rent wasn’t paid). That’s all going through arbitration with the DPS, as he doesn’t seem to “get” the concept of a notice period and is challenging the retention of his deposit – it will all get sorted in our favour in the end, but I just hate hate hate the stress and hassle that goes along with all this…

Still with me? No? I don’t blame you!

Who’d be a landlord???? Or a tenant?? Feels like we’re getting the worst of both worlds at the moment, and none of the benefit – we don’t live in the place where we are representing MIL as tenants, or benefit from the rent from one we are letting on her behalf…

Am so, so, so heartily sick of lurching from MIL crisis to MIL-related crisis.

These are not simply misfortunes that are “just” happening to us; these are all a direct result of someone else’s (i.e. OH’s) own choices in a) insisting on keeping the house under tenancy and not just selling (he owns half), and b) keeping MIL out of residential care – and I just end up held completely hostage to these decisions. Funnily enough, I don’t get any kind of say in either of these major questions, but I do get to deal with all the fall out – not a “deal” that’s working for me, thanks.

Right now, the best of a bad set of options, and a seriously tempting one seems to be to ask OH to move out, and come back to me in 6 months when it’s all sorted one way or the other – cause right now I am officially done.

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Pulling the Plug

Oh dear…

Just had a call from OH as angry as I’ve ever heard him sounding…

MIL has been ringing non-stop since Friday harrumphing at us about a minor plumbing issue she’s having (water running slower) – and we’ve also had several messages left by the House Manager telling us she’s doing the same to her, though much more nastily in her case (actually, MIL’s been calling her – amongst other choice epithets – a “silly moronic old cow”).

(How odd that – of all the things MIL forgets – she somehow still remembers that HM was not particularly nice to her in the past (when MIL was much better able to manage), and reacts accordingly (if, without doubt, excessively and without the usual social fetters on…)).

A plumber was duly arranged by us for this morning, and OH called MIL twice to make sure she knew he was coming, but then we later hear from the plumber (who annoyingly didn’t call while he was standing at her door – only after he’d left) that MIL wouldn’t open up over 15 minutes – and OH is 99% certain she was there, as he’d only called her 3 minutes earlier…

Cue OH snapping and going mad (in his own words) down the phone at her, telling her she’ll be locked up if she carries on like this etc etc. He even said he understands now how people hit those in their care with sheer frustration – he was that angry (thankfully this was over the phone, so that sentiment was not put to the test…).

Arghhhhh.

Plumber can be rescheduled. HM will be apologised to. But what to do with MIL???

Personally speaking, this is just another example as to the writing on the wall for MIL’s “independence” of late…

The carers, as well as local shopowners and hairdressers, have all alerted us to the fact that MIL is going down to the corner shop several times a day (potatoes seem her most recent fetish – she has enough in stock to feed a small army…), so much so that she has even had her feet bleed on occasion (and, yes, this does make my heart well and truly break…).

Her flat stinks of cat litter (despite daily changing on our part), rotting food (hard to engineer a removal these days without a showdown ensuing…) and stained underwear (she’s not incontinent, but I think has serious “issues” now with wiping…).

It’s a care home or nothing for me now, in terms of the level of effort I’m now willing to put in in terms of keeping MIL afloat.

I’ve wasted enough of my life dilly dallying round the edges and trying in vain to delay the inevitable. God knows, I’ve moved mountains enough for MIL over the last few years, and will undoubtedly do so again when it comes to moving her on into residential care, with all the stress and bureaucracy that will inevitably entail.

Until then, I’m done trying to make any sort of constructive difference in her life, not when it will all come to nothing anyway. There is only one more “concrete” change to come (if not death) – and that is the move to the care home. Anything less is just window dressing, as far as I’m concerned – and I’m way beyond that now…

I’m counting down till then. It can only be a matter of time now till OH cracks, or events otherwise overtake us…

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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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