Saying hello…

Hello all,

Just dropping by to say hello, now that we are no longer immersed in the day-to-day dementia world these days…

MIL has been in the care home coming up to three months now, and is at last responding to medication to manage her daily aggressive outbursts. For 90% of the time now, she seems very happy and chipper – I have no idea if she quite grasps where she is or not, but is very engaged with the carers and care home manager, and likes to help about the place etc. They’ve been brilliant, I have to say – it’s not a “posh” place by any means, like some we’d seen, but is clean, orderly and MIL is looked after really well, so all in all best case scenario we could have hoped for really.

OH is still taking her out every other week, and on those occasions she’s more confused than ever these days – referring to her dead husband as being alive, getting toy teddies confused for live cats, etc. But she’s happy to see OH still – though it’s hit and miss whether she recognises me properly still (to be fair, I am seeing her only very occasionally now). And she can still put away a whole mixed grill!

As for us, now the weight has lifted and our minds at rest, life has become so, so much better. The last five years had been a long old slog dementia wise, but fair to say that the last six months before MIL went in nearly broke us – definite marital / sanity / employment make or break material for a time there…

But OH and I survived, and are now coming out the other side and back to ourselves and one another again. OH is coming off his antidepressants, and surprises me frequently by showing glimpses of the “old” OH before all this kicked off, and he became so worn down. In all honesty, I’d almost forgotten what he or we used to be like!

The stress of dementia care has now been replaced by the joy of now being Mummy and Daddy to MIL’s (now our) much beloved cat – to whom we have both now lost any and all sense of reason, dignity or perspective… I thought you’d like to see a few pics of some of his finest moments – clearly he is the absolute cutest cat in the world, even objectively speaking We are just honoured to be his minions these days!

Speaking of cute, my little nephew is now 11 months on the scene and getting more engaging by the day. Gorgeous as he is, I’m not at all broody as a result – I’m exhausted after just five minutes of auntie time! Definitely suited more to cat parenthood myself, I think…

Despite the whole drama of last year (also he first year of new job – so all horrible timing there), I still got a really positive annual review at work the other week, and am really liking it here, as well as the people I work with. OH is ticking along well at the office still too – I think they just see him as part of the furniture these days… They gave him some shares in the company last year, which made him happy at any rate!

So all in all, we’re back to living a nice little mundane lives what with work, each other, cat and family – with regular visits to MIL but none of the associated stress or drama on a day-to-day basis. Hoorah for dull normality, I say – there was light at the end of the tunnel after all…

I hope all are well on here, and I’m sure I’ll have occasion to report back again in future.

In the meantime, thank you to all for responding and holding my hand over the last few years – the support we’ve found online has been invaluabe, and we wouldn’t have survived it without it…

Love for now from the other side,

DG x



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6 week review

Well, that was a turn up for the books.

We were expecting to have something of a fight on our hands (I think we’re still in battle mode from the last hellish year to date), but far from it in fact!

OH and I were VERY impressed by care home management – in particular the very warm, empathetic, capable care home manager (CHM), who is clearly very adept at managing MIL’s various “behaviours”.

I’m guessing Caribbean background (just to set the scene), very quick with a deep laugh and big smile – who spoke genuinely warmly of MIL, who (when not having one of her daily “episodes”) is apparently “lovely”, “engaged”, “talking to the staff like friends”, etc. MIL is also eating, drinking, sleeping well, and taking part in activities – bingo is a new favourite, apparently. She’s also gained a bit of reputation among the staff as “having an answer for everything” – some of the comments and comebacks MIL has come out with that CHM relayed actually had us nearly in stitches. Clearly there is life in the old dog yet.

CHM is clearly very good at quickly getting to know what makes people tick (psychologically manipulative, in the nicest possible way!) – harnessing MIL’s restlessness by having her help out with washing up / setting the table etc, and also discovering something of an apparent ability for writing on MIL’s part. She showed us the most lovely letter, where MIL had written to CHM saying she would like her stay to be made permanent, as if she went home she’d be lonely and had made such friends there. The few times we’ve seen her write over the years, it’s been an semi-legible scrawl, but this letter had straight lines, proper letter format, and even words like “permanent” spelled correctly. Gobsmacked was not the word!

By the end of the meeting, I quite honestly wanted to hug her (CHM, I mean – though more on MIL hugs in a bit).

Yes, there are well-founded concerns about her lashing out when she does get herself worked up (usually happens every 1 to 2 days), though the CHM and staff have apparently dealt with this many times over, and it’s by no means the “deal-breaker” we feared. However, when it kicks off, apparently the whole home knows about it, so they have to manage that around other residents, some of whom don’t react well to noise or upset. That notwithstanding, the home are all for helping her to settle further, exploring appropriate medication, and building on positive progress made to date.

Next steps are that the care coordinator is going to have a psychiatric review done, with a view to getting MIL on memantine or other appropriate combination of medication. CHM is also going to start on managed outings – just down the road to the cafe at first, but with a view to building up to more extended outings that either the home organise, or we take her on in future (i.e. pub meals, cafe visits etc.).

So all in all, a verdict of “when she’s good, she’s very very good, but when she’s bad she’s horrid” (but everyone’s working on that).

After the formal meeting had concluded, the staff brought MIL in – the moment we’d been absolutely dreading and psychologically working up to after last month’s utterly disastrous and soul-destroying attempt of a visit.

She looked so well!!

Being fed, watered and medicated over the last 6 weeks has clearly made a huge difference – she was looking much less frail and fuller in face than she did when she went in, and was in fine form on top of it all too. Delighted to see us, hugs all round, no agitation or asking to go home at all, laughing and joking with CHM, and she recognised me this time round too!

She happily toddled off after about 10 minutes when prompted that dinner was being served, seemingly happy in the assurance that we’d be taking her out for a meal the next week (or at least OH will be)…

I have no doubt we caught her on a good day, and that when things are bad, they are horribly, awfully bad. We are not naive in that respect at all.

But even I had a happy tear in my eye by that point – and our care coordinator (the one who had helped so much in the past) was clearly delighted on our behalf.

Needless to say, OH and I walked out of there after as if on air – and it feels like the weight of guilt and worry that’s been on OH all this time has all in one just rolled off his shoulders…

I always hoped and suspected that the active stimulation / proper food and nutrition / human contact would benefit MIL (always a social butterfly), and by and large that does tentatively seem to be the case.

If we can nail down the medication to manage the aggressive outbursts, dare I say that we might just have hit on the right people and place for her at long, long last…??

Best not, on reflection, but still, a much more positive outcome than we’d initially feared!

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One week on…

Another week on and we’ve finally stolen ourselves to contact the care home again – MIL is still the same as she was at the last count, and has pushed and shoved the carers on occasion too.

They keep trying to get a urine sample from her to rule out a UTI, but with no luck (I could have told them that!) – I think the plan is to get the GP in anyway and see what they can do.

OH is feeling very sad about it all.

As for me, I am feeling surprisingly – not exactly indifferent – but detached from it all, if that makes sense…?

Like I’ve more than done my bit over the last 5 years, and there is clearly no alternative to the above now – therefore it’s time to be selfish, move on with my life and try to be happy at last, after so long fighting to keep both OH and MIL afloat, and advocating on MIL’s behalf.

It makes me vaguely sad when I think about it, so I just choose not to, now that I actually have the ‘out of sight, out of mind’ option and this illness isn’t actively infringing on my life of a daily basis.

I don’t plan on visiting going forward (OH will carry on, once she’s settled a bit more) – it’s not like she cares about seeing me in particular (OH is the golden boy there), and it would only bring me back down again as well. Better for me to keep on top of her administrative affairs (assisted living tenancy in the process of being wound up), and supporting OH when he comes back from a visit all upset (which he will).

Which I’m sure probably makes me a terrible person. Oh well.

But she was a virtual stranger to me at the start of all this, and she’s even more so of one now. My role in her life, which has been all-consuming over the years, feels to me to be officially over now.

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Sooooo, MIL has been in the care home for just over a week now – we had heard early on that she’d been “restless” and “wanting to go home” from early on, and had (predictably) not taken well to the fact she couldn’t come and go (one hundred times a day) as she pleased. So far, so expected.

We had no option but to go round on Friday evening to retrieve her keys for a flat clearance / industrial clean job on her assisted living place that was scheduled for the next morning (wanted to cut off any possibility of return as soon as possible – as remote a possibility as that seems).

We had hoped to pick up the keys, drop off another suitcase and run – but no such luck, as she was passing by and homed straight in…

I won’t forget the look on her face when we arrived in a hurry – utter joy and relief, as if she’d thought for some reason that we were never going to see us again. And of course, she straight away assumed that we’d come to take her home…

She was in a terrible state – all over the place, head in hands, shaking, tears, and unable to express herself coherently – just saying saying it’s “a dreadful place” and “it’s all gone wrong” and (repeatedly) “are we taking her home now…?”. She still thinks she is playing bowls (canned years ago), and doesn’t actually know where home is when you ask her – only that she’s “in a wrong place” and would rather be with “you and wotsit” (no chance!). Pacing, fretting, anxious, agitated, and a word I’ve never used in relation to her before – tortured. Truly tortured, tormented, in absolute anguish.

Accursed awareness.

She clearly needs to be there – of that there is no doubt, but she is at the moment clearly the least far along person in the home in many ways, and the only one seemingly not content to just sit placidly in a chair and stare vacantly at the TV. It’s so cruel that this is a woman who has zero short-term memory, drinks shampoo, boils cornflakes, eats cat food sandwiches, flushes pants down the toilet, and who left to her own devices would quickly run out of food or poison herself with moldy fridge items or chemical fluid within days… And yet, she has the awareness to understand – at least in part – where she is at the moment, and that she is trapped there for the foreseeable.

I can only hope that it was our presence that generated that level of agitation – though apparently she has been like this to a lesser or greater extent for most of the last week.

Come Monday, I’ll be pushing to get her on whatever drugs are necessary to get her to a calmer and happier place. I know it’s very, very early days, and far too soon for her to have realistically settled in as yet – but, even so, I’d still rather she was a zonked out zombie than the cowering wreck she is right now…

As horrible as it was to see her like that, the strange thing is that OH and I have both somehow managed to compartmentalise since. In fact, we’ve had one of our better weekends of late – as if we’re feeling more ourselves again after all the trauma of late, and the clouds are finally beginning to part.

I now I feel bad for not feeling bad. Or at least not bad enough.

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Well, at least someone’s relaxed!

Welcome to our newly acquired step-cat (previous light of MIL’s life), who will hopefully get used to his new mummy and daddy soon….

(He will be getting a proper diet and nutrition going forward though – how MIL has manged to get him to that size while feeding him cornflakes, coffee granules and peas I’ll never know…)

He is still getting used to us at this stage, bless him, and is wandering about and mewing a lot. Apparently, he was so scared leaving the flat on the way over yesterday, he weed himself in the car (my lovely new car, ah well…) – poor thing. He’s barely spent a day in his life away from MIL (and he’s 9 now), and literally not one day out of the assisted living flat in the last 18 months (MIL would absolutely freak if he even looked in the direction of the door there…).

Now I am his mummy, and need to make up for the last two years of “loving neglect” he’s been subjected to, for the sake of MIL’s happiness – how could we have done otherwise at the time…??

As for me, I have never possessed anything larger than a hamster in my life! I’ve never managed to keep a basil plant alive for over three days, and have even been known to kill cacti (despite my best efforts, I hasten to add…). I’ll be hitting the pet shop and googling how to be a responsible cat owner tomorrow – though he must be fairly resilient already, if MIL hasn’t somehow managed to kill him yet!

Bless him – he is our little silver lining to this whole horrible, god-awful situation. I only hope he comes to love me as I’ve loved him from a kitten, from afar all these years…



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What a headfuck of a fucking week…

  • One last minute sucker punch last Wednesday with eleventh care home move cancellation, and mutual plunge into subsequent despair.
  • Then weekend at work pulling off big important project – have only had one day off in the last fortnight, and even that was spent visiting multiple care homes.
  • Three separate crying episodes at work (two of which went mercifully unnoticed).
  • One emergency raw sewage situation (due to MIL repeatedly flushing her pants down the toilet) leading to evacuation of both MIL’s and her poor downstairs neighbour’s flats.
  • Same night, OH and MIL at the local Premier Inn due to aforementioned plumbing crisis, and move to second-choice care home brought rapidly forward as a result.
  • MIL is moved into said care home by OH the next morning, while I am obliged to go to work (have very understanding manager – but am already covering for two other people as it is).
  • Same evening, I am again obliged to go to an important Industry Awards events – an honour to attend and an event I’d been seriously looking forward to (though no, I wasn’t nominated for any myself – and certainly didn’t win any!), but the timing literally couldn’t be worse…

It was really, really hard to put my professional networking hat on (a terrifying enough task as it is at the best of times!) knowing I’d left OH alone on such a key evening, and also to be “spoiled” with wine, food and entertained by famous comedians, all the while thinking how MIL was doing at the same time….  I had to do what I had to do for work, of course, and actually managed to salvage a semi-good time in the process – but it all felt somehow obscence… I also stayed overnight at the hotel given the location, so a second night spent away from OH at one of his lowest times…

As for now, I’ve just got home to see OH now for the first time since Wednesday morning, and also to collapse into a physical and emotional heap on the floor for the next two days now that running on adrenaline is no longer immediately required…. There is MIL’s cat here too – more on which in a bit!

MIL survived her first night at the home, and is sleeping, eating, drinking fine apparently – she’s having her aggressive moments, but “no concerns” on their part, all “expected behaviour at this stage”. They also said when she is jolly she is “very jolly” – which is really positive to hear. Or, at least, it could be a lot worse.

In the meantime, OH and I are both feeling numb and “shell shocked” – the last 48 hours have been so manic, it’s almost like they haven’t happened at all – especially as I’ve been non-stop day and (most of last!) night at work as well, so I’ve literally had no time to process it all as yet. I haven’t slept properly in about a fortnight, which – combined with yesterday’s night out – is leading me to feel very woolly headed right about now.

I’m about to book a spa weekend in for the end of the month, now we don’t have to be on hand constantly fire fighting, so we can hopefully decompress a bit and reconnect with each other at last. As someone pointed out to me the other day, this will be the first time in our married life that we haven’t had to act as direct caregivers in some capacity….

Fuck me. What a roller coaster it’s been, reading back. If I don’t make it to heaven off the back of all this shit, I never fucking will…

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Aaaaaaaaaaaaaaaand….. she’s in.

A bit of fluster at first, but she was then jollied along by staff, and was about to get hair done by visiting hairdresser when OH left.

Feel strangely numb.

Poor MIL. I know it’s 10000% necessary, but so sad her life has now come to this….

On a related note, as of this evening we will be cat owners. I hope MIL for her sake forgets about him soon.

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Shit hits the fan (again…)

There has been drama.

This afternoon, House Manager called us to say that the poor woman living below MIL had been forced out of her flat due to raw sewage backing out of her toilet – most likely to a blockage stemming from the flat above. MIL has form for putting things down the toilet that she shouldn’t, and when OH later went round a pile of poo stained pants we’d noticed in the bath (and hadn’t brought ourselves to move yet) had halved – not hard to put 2 + 2 together there…

HM was struggling to get MIL not to flush the loo or use taps in the meantime (as she couldn’t understand or remember not to for more than a few seconds – even with signs up), which kept making yet more sewage come up below.

Several frantic phone calls followed – between me and OH, me and HM, OH and care home, me and Mental Health team etc. Left work early and cried all the way from office to Liverpool Street – to the obvious disgust of multiple London commuters.

Upshot is that OH is getting her now, taking her for dinner, and then to a local hotel where he will stay the night in next room – so no danger of further loo flushing on her part and plumber can finally get to work. In the morning, she is going into the second, much more afforadable LA home we saw and were “okay-ish” with at the weekend (sorry – should have done an interim update in that regard). We had pushed for today given the circumstances, but they had another resident moving in already and can only “process” one a day.

Thank God (as timing would have it) that the funding for that home was approved today (which we only found out after the whole plumbing issue – oh the relief) – so no possibility of eleventh hour back out this time… She’s going in and she’s staying in this time….

I can’t tell you the relief I feel – but also the guilt on behalf of the poor woman below, who has had to go into temporary accommodation while the plumber finally gets to work. She is elderly herself, and I hate that our family drama has impacted on another innocent party – all because we, or the powers-that-be, or both didn’t act soon enough. Flowers and apology cards are in order there, clearly.

Tomorrow though, this stage of this whole horrible journey will be over.

Thank God. Thank God. Thank God. Thank God. Oh God thank you. I have no words.

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Got word at 5.30pm last fucking night that someone high up the chain has pulled the plug on tomorrow’s move for some ill explained financial reason that even the girl explaining it didn’t seem to understand. All public sector offices were shut, so nothing we could do at the time.

OH is on it now.

In the meantime, devastated is not the word.

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Countdown begins…

So Thursday is “D-day”, when we move MIL to the care home of our choice (the nicest by far we’ve found).

Unfortunately I can’t get the day off work, so I won’t be there to witness the fallout (if any), though will be on hand in the evening to help OH recover.

The plan as it stands is for OH to take a full day’s leave, and in the morning go round with the suitcase I packed at the weekend (which included a number of teddies, trinkets, bowling trophies etc) and set out all nicely, so the room when introduced looks more homely and familiar.

Before introducing her to the room though. he will in the afternoon again take her for lunch in their restaurant bit, which I’ve been in and is really nice, and feed her a three course meal and glass of wine again -which last week she was oohing and ahhing about no end. She was shown the garden and patios afterwards as well, and thought they were lovely too.

Amazingly, she understood it was a care home, and that they were there to see it for her sake. She asked sensible questions, like who would pay (“the council Mum”) and whether she’d have a TV in her room – and seemed quite happy with it all.

That’s not to say to say shit won’t still hit the fan on D-day! The home is confident she will settle soon, on the basis of the assessment – but I’m still worried that if afraid or stressed for any reason she might get nasty at some point, particularly when she realises she can’t go outside beyond the garden… Hopefully they can get their appointed GP to drug her up to avoid any such episodes.

On a lighter note, got this in an email from our lovely care coordinator on the Mental Health team:

I would like to commend you in your caring, supportive approach with your mothers care. My work has been made easier with the support from you both. I would like to thank you both for being such an amazing family to MIL, and a pleasure to work with“.

There you go! Not quite so evil then as my posts and poems at times come across!

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