The month starts with a chat with Jane about Gina’s somewhat ‘brief’ response to our very considered cry for help & how we could all move forward along with how it made us feel – which for me was ‘let’s cut to the chase & get to the point now’ as it ain’t no surprise . . .
I follow-up the MyChart smokescreen by speaking with a really helpful lady in their customer service department & run through my situation: I have HIPAA & have been granted MyChart access by Mum & her deceased husband previously, but have now been taken off by PoA who claims to be trying to put me back on but nothing has happened for months, so how can I get back on as both Mum wants me to & I’m authorised to? Simples. I’m told it’s easy: Simply to ask Gina to fill out one solitary form & hand it to Mum’s doctors. Double simples.
I update J & B about my chats with Agape & MyChart, along with suggesting I send the following to Gina, as I’m aware I seem to be hitting my head against a brick wall there – or simply ignored – & I still value Jane’s input into communicating with our leader:
Tim to Jane: I suggest I send this to Gina:
The password was never the issue Gina, it was that you changed Mum’s contact details to yours & won’t confirm or remove the 2-factor authentication, hence effectively blocking me.
Also, would you also give Agape permission to discuss my own Mother with me please – as they are telling me you have expressly advised only to discuss with you.
I also send Jane this graphic again . . .
I really feel the need to reinforce that even big pharma acknowledges these ‘side effects’, but for Mum personally it would be more accurate to label them ‘effects’ . . . 🤦♂️
Deadly effects.
Jane jets off to Thailand as she needs to get away – she’s as frustrated by Gina’s responses as I am – & messages to confirm that she’s also wondering why Mum’s had such a sudden steep decline. Personally, all I can rationally can come up with is the drugs & different environment without a constant friend are behind it all, as she was a completely different person beforehand. I’m no doctor of course, but history is repeating itself with mood swings, aggression & physical decline. Surely we’ve been here before & without action the writing is on the wall . . .
I’ve really had to bite my tongue with Gina as I’m aware that letting it all out in the open would definitely not be productive with her, plus I’m trying to let go of all, as it’s clear to everyone that Gina is in control &, ultimately, it’s not my fight as I don’t have authority here. I try to keep all my messages entirely factual & to the point – which seems to be Gina’s language – but of course I see that historically she simply disagrees with anything I have to say along with regularly contradicting herself, but ensuring Mum is cared for is my priority here, which personally for me means I need to tip-toe around any US of Awesomeness ego & pride issues . . .
I give the ladies a couple more days to continue chatting, but when it’s clear they’re finished I step in:
@Gina: The password was never the issue, it was that you changed Mum’s contact details to your own & wouldn’t confirm the 2-factor authentication code that was required just once to log-in, hence effectively blocking me.
However, I have now formally requested access & LexMed & MyChart confirm they require you to complete & submit the Proxy Adult Access form to them at either the Primary Physician Clinic or LMC in West Columbia please, which will grant me separate access from your own account:
> CLICK HERE – MyChart Proxy Form <
I attach the PDF following this message to make life easy. All my full contact details attached along with my Email address, as they specifically requested my Email address in order to contact me as I am overseas.
Also, would you also give Agape permission to discuss my own Mother with me please – as they are telling me you have expressly advised only to discuss with you. Please advise.
Much thanks
T
As you can see, I include the PDF and a link to all information required as per MyChart’s instructions during my call to them directly to sort this farce out, to ensure progress without any mis-communication or error.
Funnily enough it turned out there was, as Gina responds with:
Gina: My chart. Not actually true what information you have been given.
I am asking the hospital to help me with giving you an id – and it doesn’t appear that you are speaking as Susan. Reminder that we do not use LexMed doctors anymore.
As far as agape. There is ONE person assigned to discuss care.
Of course I am that ONE person since the health care power of attorney has my name listed.
I try to make life easy & reply cordially:
Me: Hey up,
As I don’t know the system in the US so I’ve spoken again with LexMed to avoid doubt & they confirm that a Proxy Account will be made in my name – so I won’t be interacting as Mum at all.
Sarah Walker in the Medical Records Department suggested you call her directly on 8037912018 to confirm. Thank you.
Agape – here’s where I’m coming from Gina; I only want to ask how Mum is doing & them able to tell me, would that be ok to allow?
Yes yes I absolutely don’t want to interfere in Mum’s chosen care, but simply would like to avoid the ‘we have not been authorised to talk with you by the PoA’ line when I ask how Mum is – can you action that please?
Again, I’ve done my research to ensure my facts are correct – even down to calling MyChart customer service again & obtaining a name & direct dial number for action to ensure there cannot possibly be any issue or misinterpretation here, so we can all move forward & focus solely on Mum. I was pretty chuffed thinking I’d managed to phrase all clearly, kindly & concisely, for once.
Back came the reply:
Gina: Tim.
Open your ears. You don’t hear me.
There is only ONE person allowed to call and get information from Agape. Since I go to see her at least once. Day, I am not willing to let that ONE person be YOU!
That ONE person … legally is me.
Oooh, willy waving.
Sigh. Right, Gina still thinks I’m trying to gain authority & potentially usurp her, yet Agape need Gina the PoA to authorise them to even simply talk with me – I’m not asking for a full medical breakdown & thesis on her care package as I’m resigned to my bit part role – but I cannot seem to convey this simple message, so I try to reply simply:
Me: Wow Gina – there was no need for that as this is my Mum we’re talking about here.
Agape simply said when I call to say ‘Hello’ to Mum they will talk to me with your consent.
Gina: You can talk to susan but the STAFF can only give medical information to ONE person. Only ONE person can call in for information. I was told that you have called several times and you were told that they can’t give you information.
That is correct. They can take a phone to susan.
Is it me or am I going round in circles? I try again, hoping against all odds that I’m actually heard:
Me: I ONLY call to try to chat with Mum Gina, & naturally I ask who transfers me how Mum’s doing – in a nutshell is she better or worse, not for a full medical rundown.
Agape categorically stated you had the power to authorise them to talk with me – so if you say no then I hear you loud & clear. Ditto MyChart.
Clear? Exasperated . . .
Gina: Susan has only had a few hours of awake time this past week. She has eaten very little solid food in 4 days. She has been getting juice and Ensure (liquid protein)mainly by a syringe yesterday. This morning her temp is 99°. Her eyes are closed this morning but she moves her eyes around and she moves her legs around.
Complete change of subject, right, I get it. Of course, diversionary. Mind you, she has come back to the priority after all & I’ve wasted enough time, effort & emotion on this madness anyway, so I emotionally move on & let go a little more.
Later in the day another ping:
Gina: It’s 6:15 in the afternoon. I am on my way to sit with Susan. I will hold her hand. Pray with her and simply love on her. She has the most peaceful face.
Oh Gina. Apparently she’s gone from allegedly not sleeping at all – despite always being told she was asleep whenever I called 😳 – to rarely being awake, having little solid food & a fever to now a peaceful face & being sat with to pray.
Yep. Powerful image eh.
I’m fuming again at this lack of openness. I know how delicate Mum’s life is & how it now hangs in the balance – I can read lines & between the lines – but I simply don’t get this controlling gatekeeper who drip feeds information as & when she feels like it. I vent as much to Jane:
Me: I’m very conscious of 19 weeks ago Gina was unable to care for Mum for more than a single night, when at that point it would have been possible to arrange care at Warner Woods or Colonial for a couple of days & flown me over immediately to offer care, so like previously when Mum visited here & arrived completely stressed out & disorientated needing 24-hour comforting whilst she got her bearings, but when that was suggested to Gina I was told clearly that what I wanted wasn’t in Mum’s best interests. Remember?
I believe her recent messages confirm exactly who the real Gina is & what she stands for, but as Bob & Mum chose her to handle their future ‘care’ my hands are tied. I have to accept their choices, but have tried my very best to have input as I truly believe that the brain meds are killing her physical body – which is backed up in real world testimonies worldwide, away from big pharmas money-making club – but Gina has made it clear she is calling the shots & will not involve me, so ultimately she is behind this rapid decline, as I hope we all note it’s not just a mental decline – it’s a rapid physical decline too which contradicts all documented FTD evidence & timeframe guidance.
It stinks. Note the mis-medication. Note the side effects described. Note the pillar to post disruption of her life, routine & ‘home’. Note the atmosphere she has been surrounded by for the past months. Note the lack of ‘care’ & warmth in all communication. Note the lack of actual action to involve us. Bah.
And breathe.
Seriously, yes, I will absolutely point the finger at who & why I believe there has been a decline, along with noting that I have been consistent all the way through this nightmare, but right now I need to focus on my entire family’s well-being & grieving of losing my birth mother.
My own homelife is suffering too as Mum’s welfare now has taken over everything else, plus Jane has had to get some time away it feels like I’m just treading water waiting for the inevitable to happen in front of my very eyes, all the time handcuffed far far away across the ocean desperate to help but being blocked at every turn.
My head & heart believe that my Mum is being killed – literally – & my head & heart desperately want to save her, but I’m being blocked & I don’t have authority to do anything about it. Ultimately I see it’s not my fight now. Everyone concerned has a right to make their own choice, & will be responsible for their own actions, I can only be responsible for mine – which is to ensure I honour my Mum & live with grace & love. Tough though.
The next morning, the 5th, I message to ask how Mum’s been overnight?
Gina: I stayed until late. She actually opened her eyes and was blinking and looking around. But no conversation with me. I went home late to catch a nap and I’m on my way back there now.
I thanked her, & asked about the fever & if morphine was involved?
Gina: Yes her temperature was back to normal & she was on no meds at all & once the nurse was finished did I want to video call?
Oh yes I do. It’s been a month – probably more . . .
I duly video called & was greeted by the screen full of Mum for the first time in what seemed like a lifetime. She was almost unrecognisable – skeletal except for her swollen morphine mouth – clearly incredibly frail & fragile along with being unable to communicate. She was vaguely conscious, slowly moving her head & arms occasionally. I have a sense that she can hear, but she’s unable to respond. Oh Mum.
Finally the penny dropped: Of course no meds as that’s what happens right at the very end of life & course she wouldn’t be seen by LexMed any more – so no need for MyChart – as she was bed-ridden so wouldn’t be bumping into things either.
Obviously I haven’t seen her for a while & although Gina & Agape have tee’d me up that Mum wasn’t in a good way, I wasn’t prepared to see her like this, as although I’m acutely aware of her maniacal rollercoaster of behaviour issues there’s never any actual physical description of her apart from the comparison photograph I raised a few weeks back; it’s a massive shock to see anyone like this – let alone your Mother . . .
I give Mum my love & tell her I’ll see & hug her soon, & Gina then turns the camera around & asks me to hang on whilst she makes her way out of Mum’s earshot, then proceeds to tell me pretty much the above information about how she thinks the frontal lobe dementia along with being angry with Bob have taken hold but is now peaceful etc., etc., blah, blah, blah, until I step in & simply ask if she’ll recover?
“No, she won’t.”
Now, honestly I can say hand on heart this was not new news to me, but I felt the knife turn deep inside. I guess it was because I had to ask rather than it be volunteered, & my frustrations at Mum’s ‘care’ over the last months rose up & all I could voice was to say that it was such a shame that Gina’d decided to do all herself, as the treatment & medications Mum has been fed have taken her life rather than the improbable double-quick onset of FLD BS that we were being fed.
Gina said she was sorry I felt that way & hung up.
I could’ve taken her out of this world myself that very moment, without a second’s thought & would have happily paid the price for it.
Responsibilities & sloping shoulders along with pride & legalism don’t make a good combination, & just because you wear a dog collar doesn’t make you a Christian – just as sleeping in a garage doesn’t make you a car. Ahem.
This pastor has never exhibited any Christian love to Mum’s family from where I’ve been standing over the last few months, in fact I’m reminded of Pharisees as she’s single-handedly controlled Mum’s life for five months & drip-fed whatever information about her whenever she has deemed fit despite the outstretched hand & heart pleading to be involved. I’m sure there have been struggles for her too, but she had free will to withhold information, ignore wishes & messages along with rejecting the offer of proactive help along with physical care throughout the whole journey. She’s consistently usurped family whilst passing Mum from pillar to post – three ‘facilities’ in as many months – & subjected her to the US of Big Pharma guinea pig drugs whilst ignoring Mum’s single basic need: love – all whilst constantly shouting about what a caring & marvellous person she is over social media. She even visited Mum without actually speaking with her for goodness sake. No, I’m not taken in by this.
Too strong? No, far from it: Look at the behaviour; look at her own family dynamic & ultimately just look at the fruit.
Within 10 minutes she messages me:
Gina: Wow! Just Wow!
You don’t know all the facts. You have no right to say that she is dying because of the meds I chose to put her on.
Just to let you know this is the last text and video chat I will have with you.
Only I can control my boundaries and this boundary loop had been closed. You will not be able to make me cry another tear.
Her tears?! This really is all about her.
I message straight back:
Me: Oh wow indeed Gina, wow indeed that it’s all about you eh. You have taken on Bob’s role perfectly.
I have always looked you in the eye & communicated with you Gina; I don’t hang up or threaten to go silent, because Mum’s care comes first, not your boundaries.
I have every right to express my views to you – especially as my views are backed up by action & fruit. If my Mum had come back to England as requested initially this would never have happened – but you refused & told me you know best & shut me down, despite Mum belonging with her family.
Communication with you has been shocking – why have you kept my Mum from me? Why? You actively denied me contact & information, consistently trying to passively-aggressively bully me, so let’s confirm right here that if ‘I don’t know all the facts’ it’s because I have not been given them.
You have caused me much more stress than I could ever have caused you, because my Mum is dying with you.
She blocks me. Of course she blocks me.
Yet again I find myself typing message tennis & wish I could offer something more interesting but really, facts are facts & above all I’m trying to keep these words totally honest & real. I’m not trying to character-assassinate anyone here, but this has just got really real & transparency is essential, so I let Jane & Brenda know what’s just happened:
Me: Called Gina & spoke with Mum; she is not in a good way at all, with a very swollen mouth but certainly conscious.
Gina then took me to one side & essentially repeated her previous message about frontal lobe dementia & Mum’s anger with Bob, along with confirming that Mum isn’t now expected to recover & is now completely off all medication.
I told Gina that I felt the overuse of medication had brought her to this point too quickly for FTD – but was met with a cold ‘I’m so sad you feel this way’ & she hung up.
I then cut & paste Gina’s above message to me followed by my reply – as I have nothing to hide – & end with:
Me: @Jane & @Brenda – please do keep me in the loop.
I pray for light to shine in this darkness, truth to come out & Mum to be in a better place than she is now 🙏
A couple of minutes later this pings up:
Gina: Sorry. I failed to block this group.
And she leaves the group.
Even that message tip-toes on the edge of the English language, but I get the jist . . .
I vent to Jane:
Me: Looks like I couldn’t bite my tongue any longer . . .
Well, when faced with Gina rubbing my nose in it by telling me how much she’d done for Mum & that the issues started back at Deweyland so her decline was to be expected, whilst I could see Mum struggling to breathe with her skeletal swollen mouth – which I’ve seen before, so know exactly what causes it – so soon after being medicated up to the eyeballs on a cocktail of this & that including morphine & bizarrely only ‘clean’ today was too much to let it lie. So I didn’t. I told her it was just as likely that the meds were affecting her physical body which was clearly shutting down quicker than expected & she ended the call & messaged me as you saw.
I’ve tried to keep all open in the group chat so both you & Brenda can clearly see exactly what happened, as I’m aware that Gina historically plays to the crowd & distorts events. Not any longer with me.
No one comes between a Mother & Son. No one. Even a new one!
Right, moving on – Mum is still with us so all is far from lost & I trust Gina won’t take out her boundary issues on you & Brenda – who incidentally called me to offer her support & encouragement so is fine with all but doesn’t want to comment in the chat – but do shout if there are any issues.
She’s a control freak who is lethal – be careful.
Jane’s concerned for us all; she confirms she know I was bound to explode one day & that Mum isn’t eating & is apparently off all medication & drinking very little.
She knows timing is running out.
Timing isn’t perfect as Lia & I head off to Crete on the 8th as we have a long-standing booking to see the Easter festivities, along with naturally visiting Mary, Lia’s Mum. As it turns out, it’s not the easiest of family times there either – but that’s a whole other blog . . .
I speak with the ladies during my first week away, & on the 11th Branda messages to say she visited Mum the night before but she was sleeping, so went this morning & found her awake but not talking, plus also confirmed she’s not seen any change the previous week. She says she’ll visit tomorrow too & offers to call me whilst there. Thank God for Brenda 🙏🙌
Mum indeed isn’t really ‘with us’; she’s conscious, but pretty unresponsive although Brenda swears she squeezes her hand when they’re together & is convinced she can still hear all that’s said.
On the 14th I have a brainwave – 🤓 -I start a group WhatsApp between Jane, Brenda & I & record a voice message for Brenda to play to Mum when she visits.
Genius. Better late than never eh . . .
Jane sends her own the following day, along with a video too:
I’ve included the voice messages here as as they are such a powerful part of this journey it would leave a gaping hole to omit them, because as always seems to be the case, the miracle is in the timing . . .
Then all is quiet until the middle of next night when I receive a call from Jane, who between tears tells me that she’s just heard that Mum has passed away.
Mum has gone.
She follows up quoting a message she’d just received:
Gina: Jane,
Our sweet, caring, loving, precious Susan now rest in the arms of Jesus. She passed about 20 minutes ago. April 15, 2023, 10:40 pm
She is at peace now🙏
Susan Dewey (née Burns)
06-10-43 – 15-04-23
R.I.P.
Good bye Mum.
I’m stunned but not shocked. I’m sad but relieved. I’m angry yet at peace. I am an absolute walking conundrum.
I’ll try to put it into mere words: I’m stunned we’ve been robbed so quickly after meeting each other, but not shocked as I look at how she’s been treated throughout her life; I’m sad we won’t be able to spend any more time together but relieved she’s no longer in pain; I’m angry because I feel she was taken way before her time, yet I’m at peace she’s no longer in turmoil.
I let Jane know I will definitely be attending the funeral & can return from Crete immediately, but ask her not to discuss this with Gina because she felt the need to block me when Mum was alive, there is absolutely no need for contact now that she’s died.
Then Brenda sends through The Message of all messages:
Wow, Brenda had played Mum our messages before she went. How comforting & warming is that. Thank you Brenda, thank you thank you thank you.
I cannot begin to convey how much that means to me: that Mum passed knowing beyond doubt that she was not alone & loved by us all – & that, when all is said & done, is what really matters. I truly hope she can now rest in peace.
Emotionally I’m more relieved than anything else – as the writing was on the wall for a good few weeks, if not longer, & I was struggling witnessing Mum’s life & spirit fade away.
I’m not suffering with what I imagine are the usual feelings of losing your Mother: being left totally alone without that unconditional back-up that your Mum offers, because my Mum never did back me up – ever – so there’s no loss in that respect, as of course she wasn’t always with me. What I do feel though is a little numb that this lovely kind woman was robbed of so much: Robbed of the chance to be a real Mother; robbed of love by a loving & caring husband & robbed of long life living how she wanted to live. I’m also acutely aware that she was ultimately robbed of love until the very end. I also acknowledge that I was robbed of the chance to be with her at the end too, which I find turns my sadness to anger.
Steal, kill & destroy.
However, anger won’t help either her or me now, so I acknowledge my role in all of this & am content that I was able to offer my outstretched hand to my birth Mother & literally tried my very best to do right by her. I could do no more. Naturally, I’m frustrated by the outcome, but I fully accept that we all have free will.
I’ll really miss her you know; She was always a bright spark in a dull room & even when not fully ‘with-it’ she could easily raise anyone’s mood & beam that huge smile to light up anywhere when she felt loved & valued – perhaps just like us all eh. I found it oh-so-easy & oh-so-natural to understand her & just ‘be’ – as I seemed to instinctively know how she was feeling. It was life-affirming for me. Unconditional. Truly unconditional, because no matter what, who or where she chose, throughout our journey together I was there for her & I believe she knew that.
I knew it was one-sided, but I felt hugely buoyed by experiencing that in my life, which has been far from my norm: Adopted, only child, selfish, failed relationships trailing in my wake – I wasn’t exactly a shining example eh – but am just so happy that I was able to offer what I now know is true love, as per 1 Corinthians 13:4-11 which has healed my heart, warmed my soul & pleased my spirit.
What a tragedy that we live in a society that focusses on outward image & inward pride along with the kerr-ching of financial gain rather than nourishment of the heart.
APRIL IN A NUTSHELL:
THE END
Mum dies & that part of me dies with her. I’m using my favourite pic of her to start this month’s words, as to me it’s the happiest I’ve ever seen her, which is exactly how I want to remember her.