However, as it turns out 2022 doesn’t end particularly well as Christmas is a wash-out for Mum because she contracts Covid so is forced to spend it in total isolation. Sigh. Apparently she copes well – with just the sniffles – but is prescribed Remdesivir in good US of Amedication style. Kerr-ching!
J&J leave on the 26th December having spent a month in the US of Admin caring, cleaning & clearing, so once released from quarantine Mum will still effectively be in isolation in a strange environment from those she knows & trusts unless Gina visits her, although she’s a social soul & seems to attract company wherever she is.
I ask Gina whether this proposed ‘less severe’ dementia facility that she’s mentioned will be a permanent move, as no reference is being made of long-term plans & I’m very concerned that Mum’s future isn’t being addressed, only the short term. She states that she’d like to get Mum on an even keel first, then look at travel plans. Ok, makes sense. But then she cofirms ultimately her plan is to see Mum return home to Warner Woods to have either visiting or live-in care, but all is subject to an evaluation by her brain doc at her planned appointment in late January.
Mmmm. Why?
Mum has previously proven that with some TLC – 1 Corinthians 13:4-11 – she will recover & from where I’m standing being holed up in a ‘facility’ isn’t ever going to yield recovery – in fact she’s surrounded by negativity, chaos & unfamiliarity along with zero familiar faces.
Naturally a long phone call results & I try my very bestest to convey to Gina that this is my Mum we’re talking about, & that I’d love her to be with me. Us. Here. Family. Here in our own home if at all possible, or if it looks like she’ll need to spend the rest of her days in a facility then wouldn’t it be better to live in a UK facility where family are close by & will always be part of her life?
I also mention my concerns about the brain doc diagnosing Mum for over two years & with zero improvement – actually the opposite, as all she’s done is dispense increasingly psychotic guinea pig drugs so that Bob could cope – despite Mum so obviously suffering on them – along with her falling for Bob’s fairytales about lifestyle & diet, so either she couldn’t discern the reality of her patient or simply bowed to Bob’s requests – neither of which fill me with any confidence for Mum’s future treatment & care, so I asked Gina for a second opinion but was firmly told that they like this doctor & she is capable of change. Impasse. I pray she does.
I raise that Mum has never lived on her own as an adult – never – & even in recent years when she was absolutely seething with Bob she still wouldn’t physically leave him, so why does Gina feel Mum would like to be on her own now? I don’t really receive a response – certainly nothing that makes me think Mum wants this herself & that it’s in her best interests, but Gina is adamant that the she & the doc will decide & call the shots when they meet, so I can do no more than hope the seed I’ve sown germinates . . .
The Meeting is on the 20th, & ultimately I wonder why there’s so much reliance on a doctor who so far has brought nothing to the pot, except large bills?
You know, I’m truly not sure if any of my words land, as I strongly get the feeling Gina & Jane are looking at a US care home being the only realistic option for Mum. I don’t like to assume, for obvious reasons, but I do wonder if they feel either I’m not capable of handling Mum or if I simply don’t know what I’m letting myself in for? I try to reassure Gina that in addition to the three months I spent with Mum previously where she was worse than she is now yet recovered beyond all recognition, I’ve also witnessed my (other) Mum & Dad spending their final days/years in homes so am fully aware of what the future looks like & Mum’s real need for constant companionship; Family is family – I feel an unconditional desire for the best for Mum & will do all I can to make it happen. I’m truly praying this sinks in, as honestly, leaving Mum alone in a facility with Gina popping in every now & again along with sporadic visits from a couple of other friends feels so very wrong. On every level. I really don’t like it, but what can I do, as I realise Jane & Gina have their feet on the ground & are seeing all close-up & personal & I have zero authority or influence; I’m not being heard so resign myself to standing back & watching how Mum’s well-being is handled so I roll with it . For now.
Gina does indeed move Mum into a new ‘home’ on the 6th; but let’s not kid ourselves, Westminster is a ‘facility’ that is used by those who are mentally impaired to various degrees & she’s locked in so it’s not a ‘home’ in the slightest, especially as she cannot leave without a chaperone.
Calls from Gina stop – to be fair she appears to be very busy & being pulled in all directions so I don’t read too much into it &chat directly with Westminster staff who pass the phone on to Mum which is terrific, plus via the photographs on their Facebook page I see that Mum’s involved in some daily activities & seems to be mixing ok – including the fabulous balloon photograph above – so I still get a picture of how she’s doing. To confirm, the staff tell me it’s up & down – sometimes amazing, sometimes not – but a few days appear to have passed without incident so let’s see what unfolds.
Well, it turns out Mum unfolds herself within a week of arriving as she is discovered with a deep gash in her forehead one morning & is ambulanced straight to ER to have her forehead stitched up. Sigh. Familiar? Scroll back a few months eh. Deja vu. Oh my, I just get a funny feeling about care homes. I blame myself for not voicing Mum’s previous form for falling out of bed, but it’s too late now. Sigh. Mum’s stitched up & sent on her merry way, with no apparent internal damage. No reference is made to ‘how’ this happened, which I find concerning, but of course I’m not privy to all from such a distance.
Gina messages occasionally to give short updates about Mum doing really well & says she visits every other day – but states that she often watches from afar so there’s no physical interaction between them – & long-gone are the days of our video calls. I’m flat out with man flu for a week so don’t make contact with the home itself again until 16th January when I receive news that Mum’s kicking off & is back in Urgent Care with another suspected UTI. Groundhog Day again – including poor Gina who’s there on chaperone duties – but after many tests it transpires there’s no infection to be seen. Again. Westminster confirm now that Mum’s actually been deteriorating since she arrived & was agitated & lashed out at the staff, so the picture being painted isn’t anywhere near as bright as it was. Contradictory in fact.
This is very different to the positive picture being painted to me by Gina, so I raise my usual concerns about potential mis-medication, change of location, lifestyle, personnel, diet, hydration, sugar etc. etc. blah, blah as I’m worried by not just the difference in facts by also why there’s differences. Truth is lacking somewhere, as they both can’t be right eh.
I try to keep my chat positive with Gina, & as previously I wonder if there’s a connection to Mum’s last suspected UTI a couple of weeks into her previous home & history repeating itself, & Gina confirms she’s imminently due to visit Westminster to discuss their thoughts & findings; Great, as obviously it’s not working as it is. I ask Gina for a video call with Mum, as this has gone on too long, as it’s now nearly two months since Bob passed & she’s declining quickly.
Nothing.
Two days later Gina messages to say she met with all at Westminster & they confirmed that over the past four days Mum’s behaviour has got much worse, causing concern. They confirmed she did not have a UTI & that everyone wants what is best for Mum, then in the next sentence went on to say ‘they’ are going to medicate her – which they call ‘levelling medication’ – to try to help with the mood swings.
Ahhh. America. Medicate everything & everyone eh. The United States of A-medication. Just put a big ole plaster on it.
Gina also mentioned that Mum had done things in the home that left her aghast – ! – but didn’t elaborate or divulge any further & now Mum refuses to participate & is not taking care of herself, so has asked for Mum to be pampered by the hairdresser.
That was it. Really, that was it! No mention of root cause or anything of substance. Get a blow dry madam, that’ll sort it . . . sigh.
Well, it was it for two whole hours as then I received a message from her saying she’d visited the home & Mum was doing well with no meds last night, so suspected she was exhausted due to her increased ‘activities’.
As you know me a little by now, naturally I messaged Gina again asking her to call me to discuss, as this contradictory drip-feeding of information was simply too much to bear, & because it felt unlikely that she actually would call I also detailed my thoughts in the message so she could digest them whenever she had time – plus Jane could see all too for reference – as Mum seemed to be deteriorating rapidly with a merry-go-round of random information & nothing constructive happening apart from random medication. And let’s face it, historically drugging Mum up doesn’t end well. Not well at all.
Here’s the full message – which I admit is far too long but I had a lot of ground to cover:
Hello Gina,
A lot there, thanks for the update. Easier to talk, so please call when you are free as I feel there’s need to chat about this . . . but in a nutshell I introduced myself to Westminster today & spoke with Mum too; she was great with me & chatted freely, but is clearly unhappy there & expressed huge desire for me to visit.
Therefore would it be an idea for Mum to visit me for a while to see if life works out better here with me & Eva, rather than putting her on drugs in a home she clearly doesn’t like?
–
In not so much of a nutshell – so Jane is in the picture too – here are my concerns & thoughts on all to be clear – please excuse brevity, just to the point for now: Mum declining: You previously stated Westminster said Mum was declining over the previous 10 days, now they’re saying four? Which? No-one can see a trigger for this, so they have opted to dispense Xanax – have I interpreted this correctly?
If I have, then they are treating the symptoms & not the cause, although of course I understand that is their protocol & perhaps they have no other option, but she can’t carry on like that. Please do note historically Xanax has made Mum MUCH worse, documented when Lyle prescribed & then hastily removed when Mum ended up pretty much suicidal, which I’m sure Jane remembers. If you go ahead with this – which for the record I utterly disagree with based upon previous experience – it’s vital she’s observed constantly. I appreciate you have PoA, but as you say, it’s vital you & are familiar with all her medical history right?
Talking of medical history – it’s all there to see, what causes you concern? Zoloft: How long has it been given on an ad-hoc basis? Is this just at Westminster or was it happening at Colonial too? Pampering: Although wonderful in theory Mum is not used to that Gina; her culture is being told what to do, when to do it, how to wear her hair & when to say please & thank you et al by Bob. Period. Being part of a codependent & narcissistic marriage for 40+ years means her life is now utterly different & unfamiliar to her without a single constant, apart from feeling she’s not happy.
ANYTHING away from her previous routine will potentially be viewed with suspicion & confusion, & naturally when confused she will feel unsafe & lash out, which appears to be happening here. I go back to the last conversation I had with Mum at Colonial, where she asked for a weapon because she felt unsafe. When pushed on that she narrowed it down to a rifle. Serious. No one mentioned she was confrontational with staff/residents there, but she clearly felt unsafe & said as much, so what does Mum have to say about how she feels at Westminster now, or didn’t you get to speak with her today? For reference she told me she can’t wait to see me & is looking forward to visiting me or me visiting her – as witnessed by Anesha.
Participating: Westminster are portraying a different story as she’s been included in virtually all of their daily public photographs of exercise & activities, but I appreciate this is just a snapshot of the day. I thought she looked well – even with smiles until yesterday, where I did note she looked disheveled & had no sneakers, as I’m sure you did too. I also noted the sugar snacks offered.
I hope it goes without saying that I hope everyone concerned wants what’s best for Mum, but she is currently in a home, not her home. It’s different. She has no one there who’s a familiar face who she knows & trusts, & perhaps finds herself surrounded by people she doesn’t particularly want to be surrounded by. Has she been asked?
MRI – Dr also concerned about kidney function too right? Dr would get a handle on all if she wishes to get to the root by working on the fallout of a 40+ year narcissistic marriage to address lack of self worth & confirm that not only is Mum is loveable, but she is loved too – & then start to evaluate how demented she truly is.
–
Mum is in fact the real Energizer Bunny – liked the Masked Singer but more real! She has more energy than any of us so don’t be fooled by that wafer-thin teeny-tiny exterior – she’s astonishing BUT as there’s so little of her it doesn’t take much for her internal chemical balance to be affected, as her diet & fluid intake affect her more than most, which when combined with the potential fallout from prescription over/under medicating AND the recent Covid drugs means her gut flora will have been destroyed, so the inclusion of proven pre- & probiotics would be surely welcome to get her gut health right before adding in yet more chemicals do you feel? And, most importantly, she’s not happy, that’s clear for all to see.
Please call.
T
I receive a reply within the hour:
Gina: Tim, I know what you want and I don’t think that is the best for Susan right now. She has had so much change on her life since 11-22-2022 and I think that is most of these issues. She doesn’t know which end is up.
My initial reaction is: “Wow – who does this woman think she is?!” I’m Susan’s son who literally wants to care for his Mother for the rest of her days; I’ve witnessed Mum’s ups & downs long before Gina’s taken the reigns & have a proven track record of physically & mentally helping her cope with her issues & bring her back to reality, plus I’ve stuck my head over the parapet to say ‘I’m here – I want to help so please use me!’
Gina has pulled rank.
Ok, I try to be nice:
Me: Agreed about so much change & all upside down – which is why I believe she would benefit with time with her son – who IS constant in her life now, & familiar as so far the alternative isn’t working. Whyever not?
Which was completely sidestepped by:
Gina: She seems to be worse on the late afternoons. I plan to go by this afternoon / evening to check on her.
I’m ignored. I return to the point:
Me: It’s not about ‘what I want’ Gina, it’s about what Mum consistently wants, & maybe more importantly what she needs is her son & family around her now. Just to put your mind at rest as I’m not sure we’ve covered this, I saw my Dad through till the end with his dementia, so it’s not new ground.
Gina doesn’t reply. That makes it a hat trick. I’m shut down.
“I know what you want and I don’t think that is the best for Susan right now.”
Just imagine for a second how that makes me feel.
Mum is in a ‘facility’ – even Bob knew she wouldn’t do well in one of those – surrounded by negativity & being treated like a child. Add to that her meds are up & down like a whore’s drawers & now the only vaguely familiar faces in her life are neighbours with busy lives of their own who may or may not interact with her. And a legal right to call the shots.
I can’t physically get there to be involved.
My words are ignored.
My previous three month visit & how she improved beyond recognition is ignored. She recovered. Fact.
In fact I am being completely ignored – I’m being squeezed out.
There’s nothing I can say to deaf ears.
Nothing at all.
Mmm, I’m seething. I’m fuming about being ignored & hugely frustrated that Mum’s previous recovery is not being recalled plus I’m now worried for her future, as the US of Alzheimers is well-known for druggin’ ’n’ lockin’ up its ole-timers rather than giving them life with family. Land of the free my arse . . .
However, is how I’m feeling really about Mum’s welfare or is it about me & how I’m being treated? Oh I give this some serious head & heart space plus drop down plenty to forgive & repent, but there’s something here that really doesn’t sit well & is irritating the heck out of me, but I need to discern whether it’s Mum declining & her wishes not being honoured or me being ignored that is really pushing my button; I give it to God, as He will show me the light.
I sleep on it.
Rejection.
I wake feeling rejected. That’s it, that’s exactly what I feel: rejection. Sigh. Open wound.
Again I’m being rejected, but this time not by my Mum, or Bob, but this time by Gina. Oh boy – here we go again until I’m distracted as out of the blue Gina sends a pic of Mum sporting similar coloured nail varnish, looking as happy as I’ve seen her in quite a while as if everything is fine & dandy & a cure has been found . . .
Man, blue nail varnish? Americans eh . . . perhaps it complements the hefty bruise on her left forearm 😳
Yep. Ouch.
I mull over all as I’m unsure how to approach this new battle wound without starting an argument with Gina, when the following day another message comes through that Mum’s in ER again . . .
Again again.
Apparently she’s became agitated with staff & residents in the early afternoon so they gave her Ativan (a tranquilliser – closely related to Xanax as it’s a benzodiazepine med) but then she really started to lose it & was pushing, kicking, spitting along with moving furniture & trying to take pictures off the walls, so she was carted off to hospital.
The US of A-medication ER doc in gave her Seroquel this time (an antipsychotic med used for treating mental health including schizophrenia & bipolar), then sent her home. And today is The Meeting with Dr Drinkwater the Brain Doc – the day everything hinges on – what a day! Sigh.
I reply letting Gina know that I appreciate all she does for Mum along with what a burden it must be putting on her, & offer help in any way I can. I also reminded her that I raised my concerns previously & that now it appears that the only option being considered is medicating her, so I say I would like to visit now as I fear I won’t see her again if I don’t & ask if we can look at that.
Gina replies a couple of hours later letting me know that her opinion of low dose levelling meds is not a bad decision. I don’t disagree but remind her that there is ‘historical observational evidence that she does not respond well to Xanax style drugs etc – but understand she cannot continue like this.’ I also ask her how The Meeting with the brain doc went.
She tells me they’re in the waiting room now. Ahh, great timing Tim, so I video call her as she can’t wriggle out of this one . . .
We chat & Mum was pretty much out of it – clearly drugged up & not aware of where she is or what’s going on, so I don’t hold much faith in Dr Drinkwater giving Mum the all-clear to travel as per Gina’s check-list.
Then six hours later Gina messages me:
Tim. I am on my way because Susan is spitting and slapping the residents and staff. Tell me you travel plans and I’ll make it happen.
Oh my. Clearly the straw that broke the camel’s back has finally landed so I message back with tentative details about being there within a week as I’ll load up my credit card if it can be settled whilst I’m there but I’ll get going with all arrangements.
In reply I receive a photograph of Mum & Gina along with a message telling me, & I quote: “Today is a great day.”
Man, this rollercoaster is a heck of a ride eh.
Glad for small mercies, I send over all my proposed travel details & dates – including pics of my driving licence & passport & apply for a new ESTA – but within a couple of hours I receive news from Gina that the financial team have not completely transferred the accounts & all funds are on hold, so she is calling the lawyer who wrote the wills to find out what’s going on.
Odd.
I pray for a good outcome & let Gina know I’ll simply load up my credit card & roll with it, as I feel me visiting soon is now a priority but I suggest I’ll hold fire till I hear how she gets on with the lawyer before booking, & she confirms I should wait because it’ll be clearer with expenses if she books the travel with payment directly from Mum’s account.
I also asked Gina if Mum’s care at Westminster is affected if there’s a problem with funds, but she confirms that her stay had been paid till the end of February, & ‘those clearly for Susan’s care’ which I guess in English means anything spent on Mum’s care would be ultimately be authorised. I asked that question & Gina has confirmed that Mum’s care is ‘always covered’. Good. That’s the min thing. Reassuring.
My ESTA finally comes through the following day so I let Gina know along with saying that if she’s still waiting for lawyer info I’ll have to push my dates back a week due to logistics with work & she replies with a message saying Mum had ‘bumped her arm on a door handle’ & was in the Urgent Care Department because she needed stitches.
Sigh. Really? Bump – again again again! Does no one see the link between medication & Mum falling over? No one?
I also receive a notification from MyChart – the app that tells me Mum’s medical history & if she’s been admitted for medical treatment. Handy.
I let Gina know that I saw Mum had a gash because there was a pic on Westminster’s Facebook page. Gina replies that that was ‘inappropriate’. Eh?
I send this pic below to illustrate along with asking to talk properly with her within the next day or two as the whole situation is getting worse by the minute . . .
Gina replies with:
Gina: Oh that’s no “gash”. That’s a skin scrape. Today is a GASH! I knew that would not put a photo of todays. I was freaking out and so was the staff at Westminster that todays cut was on FB!
Me: ☝️ If that’s just a ‘scrape’ I can’t imagine how badly she’s hurt herself today. Again.
Gina: That was literally a scrape that has scabbed over. Everyone at Westminster was scrambling to see a “gash” on their page. Today was a real “rip of the skin”.
Me: Report says lower right arm 🤷♂️
Concerned. Too many accidents.
Funny how everyone seems so concerned that it’s on FB rather than it happening in the first place.
I’m starting to lose patience & grace here. Who gives a monkey’s what’s on FB as Mum’s safety is paramount here & should be everyone’s focus, but she’s black ’n’ blue & seemingly on first name terms with the hospital . . .
Gina: The nurse was with her when this morning happened. She is asking the maintenance to see if they can put something over the bathroom door hinge.
Me: Hinge means catch right, not hinge?
Door handle? Hinge? Catch? Why is language so difficult here -ultimately it doesn’t really matter what part of the door it was but it really sums up the poor communication I feel I have with Gina nowadays. There’s no clarity, & because of that I’m starting to lose trust in what I read & hear.
As it turns out I hear nothing. Nada. No reply. So I called Mum – & I did get through & actually had a coherent conversation with her, despite what she’d been through.
Still zip from Gina, so I message her:
Spoke with Mum earlier, she was confused at first but after a couple of mins was back, so we chatted for 20 mins which was a joy & put my mind at ease as she seemed very happy to chat too.
Also an odd thing just happened, password for MyChart has been changed – can you shed any light on this?
Gina doesn’t reply.
MyChart is the app Bob put gave me access to a while ago where all of Mum’s medical history is collated & stored; it involved signing consent papers (HIPAA) & shows how Mum’s medically doing along with giving me a direct route to speak/message with Mum’s GP & nurse, along with showing all admissions, treatment & detailing her prescribed cocktail of ever-changing meds, but now I can’t log in.
That’s right, the official window I have into Mum’s medical life plus notifications if she’s been involved in, err, an ‘incident’ & now I cannot access it. Strange eh.
🤔 Any link between ‘report says lower right arm’ & my access to the report disappearing you think 🤷♂️
I jot down Mum’s ‘activities’ during the month & even I’m surprised at what’s going down:
Sunday 6th
Mum arrives at Westminster.
Sunday 8th
Mum gashes head, taken to ER by ambulance for stitches.
Monday 16th
Mum aggressive, taken to ER.
Westminster & Gina agreed to low dose Xanax meds.
Tuesday 17th
Mum agitated – climbing through & trying to jump through openings.
Thursday 19th
Mum angry & aggressive, given Ativan & taken to ER, who gave her Seroquel.
Tuesday 24th
Mum gashes arm & tares her skin, has stitches at UC.
MyChart password changed.
That’s a busy month in anyone’s diary – & every single admission for treatment shows up on MyChart the moment she’s admitted for treatment – no delay & no waiting for a convenient time for Gina to message . . .
Gina is now my only source of information.
Silence for four days.
Then this pings through:
Gina: I have just worn myself ragged and a sinus infection has knocked the wind out of my sail. I have worked from home most of the week. I’m 75% after a low dose antibiotic and some cough tablets. I don’t like meds and try to take vitamins and essential oils – but occasionally, meds are needed.
My chart: I’ll check on it. Susan’s account is linked to my family account and I don’t sign into her individual account. I’ll see what I can find out about her account.
And yesterday a put a door decoration that she can relate too. She says she loves it.
And that afternoon she agreed to have her hair washed and fixed. It is so pretty!
I reply immediately wishing her a speedy recovery & confirm that I would like her to look into the MyChart account as it’s very strange that the password should change. She asks me what password I use & I tell her.
Another week of silence.
Well, actually it’s quiet because Gina goes on a well-deserved holiday to Disneyworld – until out of the blue I receive a message from Brenda, Mum’s wonderful neighbour down the road, saying that Gina had handed her the Westminster visiting baton & she’d try to FaceTime me when she was there – HOORAH! She duly does, & we all have a lovely chat which was long overdue.
Mum was clearly drugged up & spaced out – but that aside she didn’t look too bad & also looked to be very happy to be in Brenda’s company. I hadn’t spoken to her since that awful call in the Brain Doc’s waiting room a couple of weeks ago – which incidentally I hadn’t received any follow up on, & can’t see the notes as I’m out of MyChart now. Funnily enough I was just baking a cake when Brenda called – don’t ask! – & showed it coming out of the oven to the ladies which which really seemed to spark Mum’s joie de vivre as she used to be a terrific baker back in The Day, & Brenda subsequently confirmed she really perked up afterwards. Marvellous. Like mother like son. It made my day.
Everything’s better with cake right?
JANUARY IN A NUTSHELL:
DISTRESSING
Mum is going downhill very quickly & is seemingly only held together by stitches & staples, plus I’m finding Gina more & more elusive plus downright difficult to communicate with, but I am thankful that Brenda has appeared from nowhere so regular video calls are back on the menu.
I’m very worried about what the future holds for Mum but I seem to be the only one with concerns.