Sharing is Caring . . . – Mum's the Word . . .

The month starts on a downer as Brenda messages to tell me she’s with Mum at hospital; she’s fallen & cut her head needing four staples. Sigh. Poor Mum.

I’m losing count – is it again, again, again, again?

We catch-up with a chat, where Brenda lets me know about some new developments that Gina’s implemented & I let her know my concerns & findings regarding Mum’s recent behaviour concerning meds vs falls vs depression, plus reassure her that I’m delighted she’s seeing Mum & thank her so very much for being in our lives as it’s visibly clear Mum enjoys her company. She simply replies she loves Mum & will be visiting her & calling me as often as she can.

Phew.

I breathe a sigh of relief at this new development in Mum’s welfare – as not only am I chuffed to be getting back to some regular video calls with Mum because it’s been very quiet recently on that front, but Mum absolutely adores Brenda – which is reciprocated – so should be medicine for her soul too. Fantastic.

I message Jane a brief update on Mum’s recent shenanigans too, so we’re all up to speed on her reality:

Mum – ah well, yep, she fell again as you know – more stitches – more visits to urgent care – more ambulances – more friends leaned on – more suspected UTI – more more more! Now it’s progressed to a 24-hour carer needed too, & Westminster have told me that Gina’s ok’d Mum to move to a more, err, ‘secure’ unit if she continues to vent her aggression.

The following day this pings up:

Gina: I had a great break and stopped by to see Susan last evening. Brenda was visiting when I arrived. I had also received a phone call that two of the ladies from church had visited and wanted to know if I knew that Susan had fallen. (The were speaking of her fall last week).

I know that Brenda is FaceTiming and calling y’all. But things that she doesn’t know, I will try to keep y’all updated.

Mmm, it doesn’t quite tally up with these new facts does it, so I don’t really know exactly what to make of Gina’s message; Is it my lack of understanding American vocabulary? Maybe it’s simply my cynicism at how economical Gina is with the truth historically? Perhaps I have discernment that I’m being fobbed off with what someone else wants me to hear? Time will tell eh, but I ask her to let us know the news Brenda doesn’t know . . .

Next morning Gina replies, saying Mum’s having a great morning along with a pic of her looking a little vague & somewhat sheepish, & then another message saying that she’s just spoke with Brenda who would be calling me later today; plus that if Gina knew any medical things that Brenda didn’t, she would share with Jane & I & apologised if she caused any anxiety for me.

Eh? Not anxiety, just confusion!

Two minutes later Brenda video calls & we have a surreal video chatty with a super spaced-out Mum, plus it’s confirmed that that she’d had a bad night. Oh dear. Mum struggled to string two coherent words together, but was clearly pleased to see both Brenda & I although was unable to communicate what she was thinking or feeling.

I message Gina – pointless calling right? – to let her know I was confused & concerned due to the contradictory information along with hearing/seeing Mum’s condition with my own eyes, & receive an immediate reply:

Gina: Who at Westminster told you she had a bad night?

I shan’t beat around the bush – this pissed me off. A lot.

What’s that question got to do with anything? Where do your interests lie Gina? What’s your priority. Actually, who is your priority? Why are you diverting focus away from the truth of what was said? Where’s your responsibility? Do you actually care about how Mum is? Mmmm. 45 minutes later she messages to give me a new password for MyChart. Oh. I wasn’t expecting that.

I’m truly lost at her powers of communication. Or lack of . . .

I try to keep things moving forward so reply to her original question the next morning, confirming that Mum’s poor night had come up in a video chat with Brenda & Mum, along with letting her know MyChart has two-factor authentication so would she prefer either a text or Email to let me access it?

Nothing. No reply. Zip. Nada.

Four days later – count ’em! – I jog her memory receive:

Gina: Well it looks like Susan’s has been combined with mine. Unless we get this solved, I can share the dr notes after a visit.

What?

Talk about obstructive!

‘It looks like’? is a Gina-ism for ‘I have changed it to’!

‘Share the dr notes after a visit’? I’m done with relying on Gina to share anything.

Perhaps I’m missing something – my viewpoint is skewed? I’m cynical? Too controlling? Misled or misunderstood? I read her message again, manage to get my stress levels back down & take stock of all. I’m aware that we’re rapidly declining in politeness & it seems like I’m grating with her now, so I err on the side of caution & message letting her know that I think it’s great that’s she’s combined my Mum’s settings with her own, which means MyChart will send her the 2FA code rather than to Bob’s phone or Email, which will make life easy to log in – so I let her know I’ve logged in & requested to via text so could she let me know what it is. I also confirm that my inclusion won’t grant me access to her own records, just Mum’s – as per Mum’s own wishes before anyone changed the settings – & if there’s any reason why this can’t happen to just let me know. Nice, I thought. Nice one – polite, friendly & concerned, straight to the point & no wriggle room. Lovely job. Simples.

No, not simples at all, as it was totally ignored.

I’m strongly feeling that I need to visit now & simply bite the bullet over finances – as all will work out in the end 🙏 – but as time has ticked on I notice that my passport now runs out in seven months, so I’ll be really pushing it to keep the mandatory six months period of grace after travel so I’ll need to renew it. Pronto. Sigh. Arrangements made & I whizz up to Peterborough to pay through the nose for an expedited brand new new shiny blue one to be able to visit at the drop of a hat now. Good.

The silence is deafening for another week.

Brenda is away in the mountains so I call Westminster a couple of times & speak with Mum, but although both times she was eager to chat she was very incoherent, which are typical symptoms of her medication overload. Naturally the home want her controllable, so I can see why this is likely, but it’s not going to get any better is it.

On the 22nd Gina pings through an Email – obviously yet another method of comms is just what we need as Messenger & WhatsApp isn’t anywhere near enough already. Sigh.

I’ll quote it verbatim here, as I accuracy is vital:

Gina: Hello to both of you, wanted to update y’all on what’s happening that you don’t know yet.

(Tim, all of these NP and facilities are outside of the mychart system, so I have not spent time trying to get Susan’s records separated from my sign-on).

During one of Susan’s trips to the ER – Sue Drinkwater noticed one of Susan’s numbers in her blood levels was elevated. She told me she was referring it to a hematologist. The hematologist called and the earliest we could get into the office was March 14th. I have that appointment scheduled.

The issue of Susan falling has been a concern to all of us. I have a physical therapist and an occupational therapist – working with Susan twice a week. Susan is not as active (She doesn’t walk Able for an hour at least once a day.) This gives Susan extra and added exercise. Sometimes just an additional walk outside of the hallways and into the courtyards redirects Susan’s focus and she seems to settle quicker.

Also, a second Nurse Practitioner who is in the palliative care department was asked to go to Westminster and check on the care which Susan was receiving. (This is normal when patients are in memory centers.) This was also a recommendation from Sue Drinkwater. This NP is to oversee any and all of the medications that the “in house NP” and Sue Drinkwater had prescribed at the last appointment. This NP is Susan’s NP. The “in house” NP will also continue to see Susan, and work with the new NP. They all agree on the same meds, this new NP is working with the timing of the meds.

Susan has “sun-downers” and the timing of these medications is crucial in staying in front of the mood swings and anger which Susan began to show around 3:00pm each afternoon. When she became angry and aggressive, there were no positive outcomes until Susan just became completely exhausted and would then go to bed. When Susan stays up until 3-4am, she sleeps in and then misses the dose of medicine and then the cycle begins again at 3:00pm again.
Susan was completely exhausted for about 4 days until the new NP offered a new schedule of the meds.

I went by to take some supplies to Susan. It was 9:00am and I was delighted to see that Susan was up, dressed, and had eaten breakfast. This is by far – the best I have seen Susan in months! She was well rested and we had a delightful visit. I spoke to the new NP today and we discussed the timing of the meds and that Westminster has seen a difference in Susan’s demeanor and that she is calm (though still very active) and has not had the times of anger and combativeness.

I will continue to keep you updated. Tomorrow is Ash Wednesday and I plan to take ashes for her forehead and take communion to her tomorrow.

I read it, then read it again. And once more for full understanding & clarity. And what do I actually see when I read it?

I see that Gina has not & will not put me back onto MyChart despite taking me off, & is now trying to fob me off that it’s not relevant or won’t be used should Mum be admitted to ER or UC again – BS; I see a lot of procedural systemic BS; I hear a lot of doctor-talk BS to try to put a label on Mum’s behaviour & much nodding of heads in agreement with US of Assisted Living lemming culture of big pharma guinea pig drugs dispensed willy-nilly to treat symptoms rather than addressing the root cause, & finally I see the only proactive suggestion to actually treat Mum’s constant rollercoaster of moods & multiple injuries is to dispense her new meds at new times of the day.

Oh, & I see the doc wants a nice expensive scan of bloods too, & Mum is falling over because she’s not active enough, despite Gina saying that carers can’t keep up with Mum’s energy. BS BS BS.

What I don’t see is any reference to how Mum is actually feeling; no reference to what she talks about & if she smiles; no reference to her quality of life; no reference to family inclusion & certainly no reference to her ups & downs & rollercoaster or any link between these massive mood swings.

In fact I very clearly only see an ‘update’ on what Gina has decided to do, without consultation with Jane or I, so we have zero input on Mum’s care or future. Zip.

Who made her God?

What a shit show.

The penny finally drops & it sinks in that whatever ‘cure’ Mum had two years ago when I visited is simply not part of the equation now & won’t be looked at by The System, as all Americans with authority are fully paid up members of The System.

I finally accept that I have no power or authority in any of this. Not even any influence or sway. Nowt. Diddly. It was Bob’s choice to appoint Gina as Power of Attorney – & for the record I sincerely hope Mum was aware of that choice – but ultimately I am the signed-away ‘ex-son’ so cannot ‘enforce’ anything here. I am powerless. Even if I were to visit & physically drag Mum out of this madhouse I’d be locked up at gun point or more likely I wouldn’t even get in the darned country to start with. Don’t think that route hasn’t crossed my mind – but I need to act accordingly . . .

I’m devastated. And really distressed, as it seems somewhat obvious Mum won’t be coming out of care any time soon if at all as the word ‘palliative’ has now been raised.

Gulp.

I sleep on it & the next day I voice call Gina as I’m at the end of my tether with everything; In my eyes she has a duty of care to my mother along with her family, & from where I’m standing I’m seeing no care whatsoever – just placement in a ‘facility’ surrounded by strangers, medicated up to the eyeballs so she can’t speak coherently & is clearly very unhappy. And it’s getting worse. Quickly. Time is of the essence.

Sure, I’m reasonable & rational enough to know I’m not on the ground in the US of Avoidance so it’s best to hear all from the horse’s mouth to get an accurate picture, but a Pastor with PoA & full training & experience in flock management along with an estranged son who is desperate to offer love & care should surely be the perfect combination to bring life & light to this darkness . . .

We actually manage to speak – at length too, as I work through the notes I’d made earlier – which I cut & paste below for reference – as in my mind this was Last Chance Saloon for Mum:

1. Do you see me as Mum’s son?

NO!
Why not? Mum does.
You’re a daughter & have a daughter of your own, so would hope you recognise family & blood ties, but I cannot influence how you see me, but must say we’re all answerable to God.

YES!
In which case what is stopping Mum being with her family here – is there anything you’re not telling me as I don’t feel I’m being treated as her son.

She’s in a facility with no friends – her words, not mine – clearly not happy as she’s having to be medicated to suppress the anger at being where she doesn’t want to be, yet her son has offered – pleaded actually – to take care of her for the rest of her life.

2. My visit?

Over a month since you asked for my travel plans & said ‘I’ll make it happen’. Nothing. That was 20th January – Over one month ago.

Bob seems to be controlling Mum even after he’s died. How is Mum’s condition right now in her best interests? Why can’t we give me a try!

Three months this has been going on, & Mum’s getting worse daily as now she can barely speak coherently because she’s so highly medicated – & incidentally she was concerned about not pleasing God yesterday when I spoke with her. She’s full of negativity.

2. MyChart?

You took me off! This is my Mum & this is the only real-time link I have with her health – you know that.

That is out of line. You have no right – Bob & Mum wanted me involved & I originally asked you a month ago to reinstate me. This is my Mum Gina.

Do you know how it makes me feel to be kept at a distance from my very own Mum? Honestly, it’s worse than how Bob treated me.

I don’t want to burden you with relaying everything either; you are a busy lady with a large flock. I am her son – it is what I should be doing.

3. Meds?

History is repeating itself – she doesn’t tolerate them well. There’s nothing of her. Just look at the cycle of not happy & feeling unwanted & unloved, because let’s face it she’s been taken to a strange place & then moved to another strange place without any say in the matter. That’s now compounded by her not liking it & lashing out, which the only treatment offered being medication to subdue her so the home can cope with her. Happened before with Bob. Exactly the same. Has never happened in my company. In fact it’s the opposite, & she thrives. Why so difficult for me to come or her to come to me?

I went through all the above & despite my cynicism Gina reassured me that she did regard me as Mum’s son but essentially was busy & struggling to cope with everything put upon her, although she was doing her very best for Mum, & we both acknowledged there was a lot to do. I stuck to my guns that it wasn’t panning out well & we also both acknowledged there had been a breakdown in our communication & she told me she thought it was bizarre that I didn’t visit for Bob’s funeral, so I explained the situation in this financial climate of running a house & business alone in the UK with no income so dropping everything to visit the US of A Lot of Money for an unknown period of time wasn’t as easy as it appeared – plus Lia was likely to be overseas caring for her own Mum at any moment – hence pleading for Mum to travel to be with her son like most parents would, rather than vice versa. Addtionally I’m not vaccinated, so cannot officially step foot into the US of Pfizer either. There were serious reasons for my actions & ultimately I want my Mum to spend her days with me. End of story & I shouldn’t need to explain myself, but logistically I need to work with her & that means you need to know where I’m coming from without making assumptions. This finally seemed to sink in & she confirmed that ultimately she did want me to visit & was working to make this happen. Still no mention of Mum coming here, but I seriously think that window of opportunity is now closed, as right now she was totally dependent upon full-time care. Additionally, although there was no issue with the amount of money in the account to help with care, there was an inexplicable issue why these very same funds weren’t being released for Gina to use for Mum’s wishes of me visiting. She was talking with lawyers about all &, well, as it’s the US of Wild West they need so many lawyers to make sense of their madness so I took solace in knowing her experience on the ground was different to the picture she had painted with her minimum & often-times elusive words, & was ultimately working for our reconciliation. Ultimately I trusted her. I had faith in her word.

I poured my heart out to her for 75 minutes.

Our call ended amicably & with good heart; I came off the phone reassured that I would be on my way to see Mum very soon & Gina was right behind me too.

Things are looking up until two days later this beauty pings up:

Gina: Oh my! Got a call from Westminster that Susan took a tumble. She was very lethargic. She seem to snap out of the lethargic state immediately. We have been in the emergency room for four hours. I have wrestled with Susan for four hours literally. She will not be still for two seconds. She has a UTI. We are now released and she doesn’t want to get dressed so that we can be released.

Arrrgggghhhh.