Shutting Down . . .

The month starts off quietly – too quietly – so on the 10th I ask Gina if she’s got anywhere since our previous chat over two weeks ago. I also asked if she or Dion had noticed any issues with Mum’s speech.

Three days later this pops up:

Gina: Hey Tim.  I am taking some time off work to concentrate on Susan.   She has a rough couple of days.  We ended in the er a couple of times because of her aggression towards everyone, including Dion.

As she pulled away from a nurse and scraped her arm one tear in her arm required a couple of stitches.

She came back to the center and again got very aggressive with the residents and the nurse.  She even pulled the fire alarm.

We are leaning towards a 5-7 day stay at a medication center for dementia patients.  Her meds are either too strong or not strong enough.  I feel it important for her to have a low dose anxiety medication which will keep her settled but not sedated.

Argghhhh. Again, again, again, again, again!

I reply, succinctly for once in my life:

Me: We really need to talk again Gina, what time tomorrow works for you?

She does reply & let’s me know the next day between 09:00 & 11:00 her time, which is a welcome relief & I confirm it’s a go-er. I also ask Jane if she’ll be around too, so we can all catch up together.

Gina then messages to say that Mum’s in a ‘deep mood of aggression’ & to call now, as I’ve always said whenever there’s any issue just call me as I will always speak with Mum to try & console/help her through whenever she’s suffering. I duly video call & Mum is indeed distressed, manifesting typical drug-related behaviour so nothing new – but this time I witness Gina talking to Mum like a retarded child. Not nice at all. Speaks volumes. Mum won’t respond well to that. Sigh. I try to calm Mum down but I really don’t get too far, as she’s clearly very agitated, but it’s good to speak regardless, as it shows she’s not alone, & I ask Gina to let me know when she calms down, as it’ll be handy to know how this pans out.

No reply.

Jane then messages confirming she’d like to chat tomorrow, & also details her last call with Mum where she also found her agitated & incoherent. She also asked who was prescribing her meds & if she’d visited Dr Drinkwater again?

No reply. 

The next morning I wake to a new message from Gina’s message saying she’s now not available to talk today, as she has a late appointment regarding Mum’s care, so Jane & I both ask her to let us know how it goes.

The following day Jane again asks Gina for an update, as she’s worried by the lack of information given on Mum’s well-being. Gina replies that Mum is ‘no better or worse & is keeping the caregivers busy ‘chasing her around’.’ She confirms she’s hired a new agency to come in & look if meds are needed at all & if so to monitor dosages.

Ok, more changes afoot, & I’m delighted to hear that finally – finally – a second opinion has now been signed-0ff . . .

The following day, the 17th, I call Mum at Westminster for a chat, but they put me straight through to Gina – which is a surprise. Let’s face it, I’ve heard nothing more about Gina’s references to moving Mum, new meds or who is looking at her meds now, & she pretty much repeats her written messages with no further additions, so I touch upon what’s happening regarding all we spoke about in detail three weeks ago along with Mum clearly declining & when she stopped me dead & told me not to lecture her. I assure her I’m not lecturing, just concerned that what is currently happening isn’t working & she hangs up on me.

I’m stunned.

Well, that’s one word for it, but ultimately I feel I’m an unhappy son trying to discuss his Mother’s clearly rapidly declining health with her PoA Pastor & am firmly shut down.

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New levels of fuming.

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I give it to God; I pray. I look at all – including myself earnestly – & once I have some peace I send Gina the following voicemail from my heart; I don’t want to alienate myself or make an enemy for no reason, but she’d finally crossed my boundary & I’ve found in life if you don’t stand for something, you’ll fall for anything . . .

A response? Nope. Silence.

Have I burnt my bridges?

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No, as it happens I haven’t, as the very next day Gina video calls from Westminster & hands me over to Mum immediately, giving us a three-minute call until she takes the phone back & hangs up without a word.

I’m not daft, & am aware that a Pastor in a position of power cannot be seen to be excluding family, so it’s possible that actions are made to solely look good rather coming from a warm heart, so I take the unexpected call with a pinch of salt but am shocked at the state Mum was in: totally incoherent & not aware of anything at all. In fact barely able to speak, let alone hold any form of conversation.

No wonder the video calls had stopped.

This is very bad.

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I take stock, give it a few days & with the silence deafening me I send the above pic to the group chat for Gina & Jane to see, as the most recent pic posted by Westminster shows the physical decline in her gait as clearly as the look on her face. It truly feels that I’m the only one who’s concerned – or has even noticed – in Mum’s rapid decline as this is definitely too quick to be frontal lobe dementia taking it’s natural path, as all the hard science says it takes 8-10 years for frontal lobe dementia to get a grip; so less than one month seems a little extreme don’t you think?

Sometimes photographs really do speak a thousand words – if not more.

Gulp.

The next day, the 21st, this pings through:

Gina: We moved Susan to a medical center this morning.  The dr and nurse from the other facility confirmed my thoughts/experiences/understandings of frontal lobe demantia.

As I look back on the months before Bob’s passing and the months before that of Susan loosing weight and her evening behavior, we know she probably had “sundowners syndrome” way before going to a memory center.

We tried without meds and it was a difficult task to keep Susan from hurting herself.  These times of aggressive behavior which began to last for hours led us to some introduction of some medication.

I am waiting to speak to the nurse practitioner to discuss this level and need of care.

My chart – none of these facilities use “my chart.” If they have a new system, I will give you access to that one.

She will not be transported to Lexington Medical ER, but rather be treated here.

There it is: if Mum has any issue at all she now won’t be treated in ER, which ultimately means palliative care. Poor poor Mum.

I thank Gina for her update & ask her to catch-up properly once she’s finalised all the the Nurse Practitioner.

In my head & heart I see the end is nigh; I’ve seen it with my Mum Jane, & I’m incredibly sad but surprisingly resigned to the fact she’s fading away. I tried my best, but The System won.

This isn’t frontal lobe dementia – it’s death by medication, which incidentally is the biggest killer in the US of Mis-medi-americation. I also note that the name of this new ‘facility’ is not mentioned along with the word ‘palliative’. I wonder why?

Steal, kill & destroy springs to mind.

Then half a day later this beaut lands:

Gina: Ok.   I didn’t physically see the daily decline until the comparison picture.

This pushes my buttons. Immediately I think: ‘why the heck not?!’ & ‘you’ve made it crystal clear that you’re calling all the shots & what you say goes – yet you can’t even see what’s in front of your face!’

Seething.

I also note that I’m surprised she’s actually admitted it, but despite feeling slightly comforted that she’s finally noticed it & I’m not the only one, I’m properly fuming at Mum being so neglected.

You know I’m honest through this whole journey don’t you? You know this is my real thoughts, feelings, emotions & actions as they happen right – warts ’n’ all? Yep, well, the truth is I thought ‘You bastard’.

‘You ’kin bastard.’ I thought. ‘You complete utter f*ck treating me like dirt on your shoes whilst spending all that time & Mum’s money on bullshit medications & so-called ‘treatment’, pushing her from pillar to post & deliberately being difficult where all she really needed was some TLC & time being loved – which was being offered to her on a plate – but now she’s nearly gone. Physically she’s now nearly as gone as she is mentally, & the one thing she had when you took the reigns was her physical strength, but that’s been prescribed out of her now & she’s a shell of her former self. She’s been robbed of everything in front of my eyes & I feel I’ve been a part of it too – you’ve dragged me into this madness & I now feel guilty myself! I’m watching my Mum slip through my fingers after being robbed of 50-odd years. You basss-tid.’

I’m watching my Mother die in front of my eyes & there’s nothing I can do about it.

That’s how I felt. No filter. Physically seething & emotionally drained. I try to process this horror story but six hours later this corker pops up:

Gina: Susan is moved for a 5-7 day evaluation of meds.  They immediately changed her next dose of meds.  Again, she only slept “maybe 90 minutes” in the past 24 hours.  She is sleeping this afternoon and I feel tomorrow will be a better day for her.   I’ll keep you posted.  Heading to an evening meeting at church.

Again, I just see contradiction & BS. ‘Pacifying’ is the word I’m looking for . . . but I reply that it’s great to hear she’s not as aggressive & now more relaxed, plus I look forward to hearing the docs report on her med changes. Oh, & again I ask where Mum is, & if Dion’s with Mum can I actually speak with Mum?

Silence.

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I add Brenda to the group chat, as she’s tried to visit Mum a couple of times at Westminster & wasn’t able to, plus she’s also getting no response to messages to Gina, so as all is looking a little clandestine it makes sense to keep us all in the loop together in one place, plus of course Brenda can witness the ongoing dynamics between Gina & family to get an accurate picture of communication along with Mum’s treatment & the gravitas of the whole situation.

Three more days of silence pass before I simply message on the group chat:

You see, I can be nice!

Gina replies three days later:

Gina: God morning.  A beautiful spring morning in South Carolina.

Susan is still at the medicine detox/assessment facility.   Dion is with her most of the day.  A sitter is with her 24/7.  I saw her yesterday am and she was sleeping.   She seems to be getting back to a sleeping routine which is wonderful.   I saw her at 5:30 yesterday afternoon and she was eating dinner.   I am waiting until Monday for a report from the doctors.  She is much more relaxed and much less aggressive.

I’ll keep y’all updated.

Ok, so she’s ‘much more relaxed & much less aggressive’ – that’s terrific news – & I reply saying so, along with asking again what the name of this facility is, & if Dion is there can I speak with Mum? I also note Gina is repeating that Mum is relaxed. Good.

Brenda messages me too for information as she’d dearly love to visit Mum. Gina still isn’t replying to her either.

Silence for another five days this time, then this pings through:

Gina: Update:

Susan is still in the medication assessment facility.  She was to be there 8-10 days.    They have weaned her off the medication she was last on at Westminster.  They were then able to assess her with no meds and experienced the baseline state of Susan’s dementia.  Many of the nurses, Nurse practitioners, and doctors have confirmed the frontal lobe demensia.

Jane asks her what happens now?

Gina replies that medication is best to help with the current symptoms, as she’s both aggressive & doesn’t want to keep her clothing on, & Sundowners Syndrome is diagnosed as she’s better in the mornings than afternoons/evenings. She mentions that before Bob passed Mum was like this too, & we all thought it was alcohol, but now ‘they all’ think it was & is SS.

Oh do they?! Shame they didn’t recall a couple of years ago when she displayed the same issues, only for all to cease when clean of meds, eating healthy & surrounded by love & purpose. Sigh.

It’s also not lost on me that we’ve gone from a couple of ‘she’s relaxed’ messages straight to ‘she’s aggressive’ without passing go, or indeed collecting £200. Sigh again.

Gina also mentions she had to have her heart cauterised a few days ago so hasn’t seen Mum, but husband Dion has been with Mum & says she’s doing well.

Sorry to hear Gina’s needed heart work, but eh? Which is it – Mum’s aggressive or doing well?! 🤯

It seems that she’s had some time to put fingers to keyboard as she sends through the following detailed messages which arrives overnight, which I quote below directly so I don’t paraphrase:

Gina: We all believe that she was restless to the point of complete fatigue and then would “fight like a sleepy toddler” until she put herself to sleep.  She is sleeping well and having good mornings.  At 5:30 on Saturday evening, she had just had a dose of evening meds.  She was pleasant and I took her outside to the courtyard for some Vitamin D therapy.  She smiled and listened to the birds.

I continue to work on the financial component, but still do not have complete access to any funding to pay travel costs.   I continue to work on it though!!!!

Susan had several bad nights and the sitters even called their supervisors that they were not able to care for Susan.  I went to the center and spent the night right beside Susan’s bed to both know what was happening, and to keep her calm when she became agitated.

Agitation/aggression was painful for both me and Dion.  Susan was determined to get up and walk but at the same time she had “jelly legs” and would simple buckle to the ground when she tried to stand – even with our assistance.  This went on for 8-10 days as we were trying to get her into a facility to wean her off – and find the right meds.  It was exhausting and heart-breaking at the same time.  Daily, we would leave the center, when a sitter came in….we prayed that Susan would sleep and we would also be able to sleep.  We would go back the next morning to find a happy, cheerful Susan.  Dion would stay.  I would leave… 3:00 came on the clock and the same story would continue.

I honestly, have not had time to sit down and put my thoughts together, much less type these notes to y’all.  Sometimes being quarantined to home after a heart cauterization can be a blessing.

I am glad I been able to update y’all.

I will let you know when I speak in-depth with the Nurse Practitioner/doctor at the facility.  I will let you know the plans after this program is complete.   Westminster is classified as a “assisted living” facility.  I am guessing Susan might need to go to a “skilled nursing” facility.  I will keep you posted.

I reply thanking Gina & hope her recuperation is going well, plus remind her that I’d be only too happy to step in to help if her existing commitments were making life too busy & stressful to be healthy, as this of course could continue for years . . .

I did have a couple of things on my mind – especially the definition of ‘skilled nursing facility’, as she’s already in her third ‘home’ in nearly as many months, so ask if we could have a group call to discuss all between her & the family or whether she’d prefer a written message?

I’ve learnt during this journey to manipulate the outcome to avoid silence 😉

Gina: Written message.

Good, no silence to be seen. Or heard . . .

I let her know that we’ll collate all & message her as soon as possible.

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Man, this is hard. I’m emotionally being torn to bits here & am watching Mum deteriorate in front of my eyes – although that’s not strictly true now, as Mum is somewhere new & no one except Gina knows where. Sigh. I talk through my frustrations & thoughts with Jane, as I’ve had enough of trying to work with Gina, because it’s clear she is doing whatever she wants with or without us – in fact it seems like she’s deliberately avoiding us.

I sleep on it & the following day compose a message to send, but decide prudence would be wise so send it to Jane first for her thoughts:

Tim to Jane: I want to send Gina the following:

Gina, I am extremely distressed at the recent events and I’ll explain why:

1. You refuse to tell me & Mum’s sister Jane where my Mum is, why?

2. Meds – Mum completely off all & baseline established all within one week?! Now they’re adjusting dose & timings to see if it makes a difference – again, no explanation of what drugs she’s been put on now?

3. MyChart – I have asked you put me back on since you took me off on 24th January; Mum & Bob both wanted me on so please reinstate me immediately.

I trust you can see and agree why this is distressing me so much, & if you find looking after my Mum & reasonable communication with the family too much for you, then maybe it’s time to hand over PoA to family?

I believe it’s short, sharp & to the point – as my standard rambling prose is really too much for anyone & clearly Gina doesn’t have the time or inclination to wade through them – plus now my patience has worn thinner than the thinnest thing at an award-winning purveyor of thin things: I want answers now, not friendly banter – & I couldn’t give a monkey’s if offence is caused as Mum’s life is at stake.

I follow up this short message with a long one to explain my rationale to Jane:

Tim to Jane: I have two issues Jane:

1. Gina’s treatment plan for Mum

2. Gina’s treatment of those closest to Mum: Her sister, her one true friend who wants to visit regularly & her son who wants to offer care.

I cannot influence No.1 but if it was going well No.2 wouldn’t exist.

What I find most distressing is that it’s clear to see we’ve ALL slowly been shut out & now have lost all comms with Mum.

Mum’s treatment isn’t working as she’s declining rapidly & Gina blanks our concerns – she ignores messages & drip-feeds us scraps from her own plan in her own time after she’s done whatever she wants to & now signs off saying Mum may need to go into a ’skilled nursing’ facility – which I guess is shorthand for somewhere altogether more dark.

Moving forward, any challenge to Gina’s plans offends her – that’s clear to see – & nothing we can say or do influences her one jot. How do we approach that? Do nothing? Just keep going “yes yes yes thank you very much Gina” whilst only Dion & Gina know where she is & witness her fail?

I don’t think so.

My experience with bullies & control freaks is that it’s best to call them out to stop it getting worse, & that can only be done by raising the issues along with outlining why it is an issue – hence composing the above short message focusing on this rather than my usual lengthy word salad.

I realise I will never ‘win’ with my views about medication harming Mum so am leaving that alone for now, but I really feel she was an entirely different person when you arrived in the US four months ago: fragile & delicate yes; confused yes – not angry, not constantly falling over, not combative or hysterical – just plain confused like a rabbit in headlights. Now look at her. FTD does not come on that quickly by itself.

Unless you’re an American, apparently.

Or mis-medicated initially. Then yo-yo’d from one med to another whilst being in unfamiliar environments treated as a dimwitted child whilst being surrounded by broken residents.

So far Gina’s approach to Mum hasn’t worked & neither has our approach to Gina. I’m not messaging out of malice Jane, but out of desperation & wanting to bring what I believe is wrong into the light.

If Mum was improving, stable or even declining naturally I could live without a daily progress report from Gina or needing to be on MyChart because I would know Mum is ok, but because I personally experienced her incredible complete healing from her previous diagnosis of dementia & Capgras I feel I have something to offer here, but am unheard; I’m fearful it’s very close to being too late, as it will be Mum who’s tipped over the edge rather than Gina.

There’s my heart on a sleeve for you – ultimately I see Gina does whatever she wants with or without us & so far it’s not working well for Mum & it feels very wrong to do nothing about that.

Jane replies that that’s a lot. She’s not wrong – as obviously I needed to get my hit of composing prose somewhere – but she thinks I risk offending Gina.

At this stage, so what?

We bat forward a couple of small tweaks until she goes rogue & sends me this suggestion:

Oh. Yes. A very different approach. She confirms she feels it conveys a totally different tone & comes from a place of mutual respect, common/aligned values & a position of care.

Mmmm, I appreciate the motives but I don’t believe it’s Gina’s language at all, so I remind her that I’ve already asked Gina my questions multi-times & ‘nice’ language simply doesn’t register. In fact ‘nice’ gets trampled upon by people like Gina – however I’m the first to admit that I don’t always get my tone right, so I suggest that Jane sends the message as she is likely to hold more kudos with Gina & elicit a reply, & I’ll stay quiet for now, but howsabout Jane rewords it from her perspective?

Look, please understand that I want to call Gina out on all this madness right this very minute & get us all back on track – including Mum – but I am aware I am not getting through to her & potentially making matters worse, so anything’s worth a shot; plus if it reads that we are all trying our very best to work with her, then if she ignores it I will have yet more ammunition to launch in a day or two . . .

Jane indeed messages the above from her viewpoint, & Gina replies very quickly.

With three lines:

1. We agreed yesterday for Susan to be at Agape House for care.

2. Adivan elixir

3. Tim has the password. He just has to request access.

Three lines! Wow.

Even I’m surprised at the abrupt response – cold as cold can be. Zero compassion. Zero empathy. Zero understanding. Zero mention of ‘together’ – just the absolute bare minimum. Mind you, even point three is a lie. But at least it’s an answer . . .

Jane simply thanks her for her reply & asks if Brenda can visit – as of course no one has known where Mum actually is for the last 10 days since she moved on the 21st! – & thankfully Gina confirms she can. Talk about being the gatekeeper . . .

I stay quiet on the chat to give the ladies a chance to move forward, but I liase with Brenda to find out exactly where the illusive Agape Care is, which turns out to be their facility in Lexington – with palliative care – so I give them a tinkle to introduce myself.

What an interesting call that was, as initially they were very cagey but when faced with clearly stressed & faraway son with a plum English accent who displays genuine concern, insight & love into his Mother they did open up a little. A little.

They confirmed that Mum was there & on Ativan (slow release Xanax) – but has also been given IV morphine to calm her down as she spat it out when given tablets. Yikes. They also confirmed that it was pointless to call to speak with her, as she was unable to string a coherent sentence of words together. Sigh. 

Morphine is never used lightly & Xanax sent her doolally – all I can think of is this:

I was then passed to a, ahem, ‘co-ordinator’ who confirmed & clarified that they had been instructed by the PoA not to discuss Mum with anyone apart from her, so I needed to obtain permission in order to talk further.

Ouch. That hurt. Strange, as I’m sure Gina will say it’s the other way around . . .

I wonder why, as all I’m after is an honest answer to ‘how’s my Mum doing today?’ from a son’s viewpoint, rather than being in the frame for dictating treatment, as no matter how much I’d love that I’m realistic of what’s possible in the US of Attorneys given recent history – but no matter, I’ll simply ask Gina to give them authorisation to chat with me.

I also did some digging with MyChart & will call them tomorrow to set up a ‘non proxy account’, which grants me access to Mum’s account under my own name. Simples.

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MARCH IN A NUTSHELL:

DETERIORATION

Deterioration in communication & relationship with Gina but more importantly a huge deterioration in Mum’s health. Now in palliative care. Dispensed morphone & Xanax along with 10 days off-grid & incommunicado – what the heck is happening here?