"Changes beyond my control but agility beyond my imagination."

The Fourth Letter from a Caregiver.

Hello, Dear Readers, I hope you’re well. Thank you for choosing to spend some of your precious time with us—a warm welcome to new Carer Mentor subscribers. You can read about me here: Who Started Carer Mentor and Why?

---

Things change. It’s one of the few constants in life that we can rely on. It’s also something that caregivers are especially sensitive to: changes in symptoms, appointments, requests from people/organisations, and many other things beyond our control. Of course, this happens at the exact point of frustration when we’re trying to keep things calm and maintain a stable routine for the person we care for.

We become adept at adapting, as Ross from Friends said in that episode with the couch, ‘Pivot! Pivot! Pivot!’

So, it’s inevitable that during this collaboration, we need to adjust our process and to accommodate unpredictability, given our priorities and the demands on our time. I’m sending best wishes, strength, hugs and understanding to the team members who have had to withdraw from this project. Rain-check!

Agility is one of the most underrated yet vital skills of a caregiver.

I’m taking this unplanned opportunity to share more about myself and share another letter to my younger self with you.

The Letters Sent so far:

1. I introduced the series, and I shared my letter to my September 2017 self.

2. 'Acceptance With Grace' by Mary Beth Kaplan

3. 'Strength in Vulnerability; Growth from Adversity.' By Dr Rachel Molloy

The Triptych of Articles: The Start of My Caregiving…

In February 2024, I wrote 'A Prelude to Caregiving: Love and Torture.' The 2015 hospitalisation was only the beginning. It was the first time I created an overview of the events. 2024 was nine years on, and it still hurt hard.

I published two other articles in conjunction with this prelude because I knew it was incomplete without them; they are the antidote to its ‘grief hangover’.

• Brussels: 'The Sixth and Sixteenth Relocation' 2015 and 1999 were two of the significant milestone years. This is an article that highlights the interwoven chosen-family events that held me together with quality moments and memories.

• Resources: 'Managing the Mental Load' Understanding and enabling yourself. This article shares the tools and resources I’ve leaned into since 2015.

One year more, and it’s easier to share more.

The Backdrop to 2015

[Warning: there are some references to hospital care, health issues, operations and disabilities that some people may find disturbing]

I’d relocated fifteen times across nine countries, spanning four continents, working with four global companies. The work included numerous company reorganisations, mergers, and partnership ventures, as well as supporting teams, individuals, and departments through change management projects. I wasn’t in the C-suite; I was building teams, brands, portfolios, and businesses, and leading them, day by day, through uncertainty.

Can you tell I loved doing what I did? It wasn’t a perfect way of life, what is? There was plenty of stress, pressure and tough decisions. There were politics, chauvinism, and many assumptions…But the best times were seeing my team members being promoted, recognised with rewards, or leaving for different challenges or life adventures. I was a leader of people first and business second—that’s what the headhunter assessments said, ‘An ENTP/J¹ with a strong red HBDI²

Change, adaptation, and acclimatisation to different cultures and countries were part of my personal definition of living and thriving. I was open to learning how to live/study/work in foreign places. I enabled change and sustained business continuity. I had a passion for talent development and an inclusive, values-based leadership style.

My work felt akin to the ultimate anthropological and sociological study, and I was eager to learn and grow; hence, the pace of change, increasing responsibility and relocations. Work-related changes dominated life.

---

Before April 2015, Dad’s health was relatively stable. He’d had various operations, and his heart and rheumatoid arthritis were controlled with numerous medications. He’d had his first heart attack in 1981 and was diagnosed with rheumatoid arthritis in the early 1990s. The quintuple bypass had post op complications, but he stabilised. Rheumatoid joint flare-ups and fevers were less frequent compared to the early days. Pill-box organisers became a regular fixture of daily life.

Over the years, he had more operations: joint replacements (titanium right hip and both knees); hand tendons cut and tied; fingers and toes straightened via surgery and pins (1990s); a toe amputated…to name the significant events. These have been the punctuation marks in our lives. Not full stops, but a litany of commas.

Even with restricted neck movement, fingers curled and gnarled and limited movement due to arthritis, he soldiered on, pushing himself to move through constant aching pain.

“If I don’t move, I’ll seize up,” he’d say, even when I could see his ankle joint was grinding in pain.

So, we knew there was no wrapping him up in cotton wool, coddling him. He was a fighter and an innovator.

Dad found creative ways to secure his grasp of a golf club (one day we’ll make a patent!). He used Velcro-strapped shoes and adapted cutlery. He found workarounds to ensure he could meet his friends and enjoy his hobbies.

Before 2015, my parents were making the most of their early retirement. They went on cruises and extended their house (my childhood home) to include a wet room and a downstairs bedroom space. (A bare essential that’s repaid its worth many times over.)

---

I relocated from Switzerland to London in March 2014 to take on a new position with a new company. It was my fifteenth move. Ten months later, there was a company reorganisation, and my role was eliminated (I’ve lost count of how many ‘garden leaves’ I’ve had, or reorganisations I’ve experienced). After several interviews and discussions, I was offered another position at the same global company, but based in Belgium, at the end of March 2015.

And then, a week later, in April 2015, after vomiting blood at home, Dad was blue-lighted to the ER. During an endoscopy under anaesthetic, he developed ventricular tachycardia. An upper gastrointestinal infection of Helicobacter pylori had caused the bleeds and destabilised his heart failure and rheumatoid arthritis. Cue gross heart failure, ankle oedema, sacral oedema, low blood pressure, and the need for oxygen.

Amidst meeting new colleagues, my new team, onboarding to a new part of the global organisation, negotiating out of an apartment lease, and packing my belongings..I tried to support my parents. I travelled between my parents’ home, London and Brussels.

Should was still a big part of my vocabulary

Pulled in all directions, I was still under the illusion that this high achiever could manage this new reality like any other ‘next challenge’. Should was still a big part of my vocabulary, and I’d emulated being a superwoman, going above and beyond to achieve more than others, earlier than others and been rewarded accordingly… So, unfortunately, ‘I should be able to do this!’ was the 2015 mantra.

Then, in May 2015, Dad was officially diagnosed with vascular dementia after several episodes of confusion and erratic behaviour. In June 2015, Dad was readmitted for left ventricular heart failure (LVF), and my discombobulation intensified.

He had several falls in 2015, which included a broken metacarpal bone. Falls from standing to pee. Falls from sitting on the toilet. Falls slipping off the side of the bed, rolling off between the bed and side-drawers. All his medications were out of whack. His oedema was bad with weeping legs, and his joints were grinding with uncontrolled arthritic pain, making him unstable.

I still thought I could manage, but by the end of September, I requested medical leave starting November 1st. ‘Congee thematique’,³

[It’s worth familiarising yourself with employment laws and regulations in your country and company.⁴ ]

In early April 2016, Dad was diagnosed with Bladder cancer. I was in my third trimester of ‘Congee thematique’, medical leave. The maximum leave time is one year.

For me, there’s been a massive difference between navigating work changes, challenges, transitions and relocations and constantly shifting to respond to the unpredictability of Dad’s symptoms and health crises. The emotional rollercoaster doesn’t come close to being comparable when love is involved.

Letter from a caregiver: ‘I Didn’t Know My Own Strength’

Andrea Faustini released the cover of this Whitney Houston song, November 2015. This was my anthem, the song at the top of my playlist that kept me going.

Dear Victoria, my discombobulated, exhausted self at the end of May 2016.

I’m here, I’m you in September 2025, and I know how much you’ve just been through. You’re not alone. Feel my love and hug, embracing you and holding you for support. I understand your frustration and anger over the recent hospitalisation. You’ve every right to feel the way you do.

Last year, 2015, was just a Prelude to the caregiving you and Mum are doing now.

How could you know, when you took the medical leave (a godsend of a policy!), that Dad would be diagnosed with bladder cancer in April?

I’d forgotten how hopeful we were in January, 2016 when we saw our ‘friends-family’. Things were just starting to get stable, with some routine for Mum and Dad. We were beginning to see some space to ponder what the future could look like! Then Dad’s pee turned from yellow-green to rosé to a lumpy burgundy. Heartsink.

I know it’s been draining, spinning the plates. Managing communications with work, getting the doctors notes and evidence to support the Medical Leave approval every three months. But we both know how blessed you are to be able to have that, especially when you’ve no idea what work/career etc looks like right now. It’s one reason we’ll never regret the decision to take the role even though we second-guessed the wisdom of it at the time. Here in 2025, it definitely was the right decision!

We know, you’re exactly where you’re meant to be. The memory of Dad sitting in the chair in the bedroom crying, so tired he didn’t know what to do with himself is forever imprinted in my heart and mind. When you realised it’s your physical presence that’s his comfort we swore that we wouldn’t mind ‘being a tool’ the hands, the feet he needed. I know this grates on the independent fibres of your soul BUT you’ll learn, or you’re already learning how this ugly twist of fate is actually liberating you from your conditioned sleeping state following someone else’s definition of success. Trust yourself, follow your heart and gut and your head will follow. You’ll find your own definition of living and thriving. Everyone’s is different, I’m living ours now.

I’m holding your hand. I know how hard everything feels right now. April-May has been the ugliest part of the rollercoaster so far. Nails in palms, as you try not to cry and use the pain to try to freeze-dry the emotion, I get it. It’s okay. Do what you need to do. You’ll hear no lectures from me.

I’m not going to go through every sordid detail of Dad’s bladder transection. You and Mum vigilantly followed up, questioned and ensured the anaesthetist knew the limitations of Dad’s neck flexibility, his heart arrhythmia and trauma from the 2015 hospitalisation. So of course, you were relieved when the operation went smoothly that Thursday and he was in a single room! Relief.

And, then all of that relief evaporated. He’d been moved to a 5 bed ward and was crying on his phone in the middle of that Friday night from the hospital. At first you didn’t get how a saline irrigation of his bladder, via a catheter was causing so much of an issue. Forgive yourself! It wasn’t his dementia, we both know, his gnarled fingers make it hard for him to eat, grab that plastic cup or in this case move the catheter tube.

But, the fact that the catheter wasn’t positioned correctly and the outflow tube was blocked were issues you didn’t expect, and couldn’t have predicted, how were you to know!. No wonder he was having painful spasms. You and the nurse agreed to you camping out by Dad’s bed that Saturday night. Okay, you crossed a whole new boundary adjusting the catheter around his penis and trying to assemble some sort of paper towel support to alleviate the positional-pain of the catheter. You just got on with it, and you could see how much he appreciated you being there for him.

Even when the nursing staff are doing their best, things seem so transactional rather than having time to care. Doing tasks, not connecting. As each bag of saline finished, it seemed like air was pushed into Dad, making him spasm, you could see the in and outflow, and feel his pain.

But the most traumatic part was trying to persuade the nurse on Sunday night to let you stay. She quoted hospital policy but it was her slightly patronising tone dismissing your concerns, she didn’t really hear us and that really got you. You hate it when you angry-cry. Breathe hon. You couldn’t do more than you did. Dad knew it, told you so and couldn’t fight for you to stay either.

But then he did the next day. Monday was bad. Dad really hated everything and pleaded to have you there with him. Even the patient in the next bed complained for him because no one was helping Dad eat or drink, when it was obvious he couldn’t help himself. Luckily there wasn’t another more urgent patient case, and Dad got the single room again, and you spent another 8 hours caring for him, watching over him, to Tuesday early morning.

Any discharge is fraught. It’s worse when Dad threatened to self-discharge; when we’re told the hospital wouldn’t organise medications if he was self-discharging. We were caught between Dad’s wishes, his needs (medications), the hospital procedures and being told the doctor ‘was probably only arriving around 3pm for discharge.’ Thank heavens there was Mum and you. Now we’ve experienced some of what Mum went through with each of Dad’s operations. We have a much greater appreciation for everything she’s done! It’s end of May, you both got through it.

I wanted to write this to you now, because I know you’re scared. All his medications are still out of whack. Keep his GTN spray⁵ close. That weird burping-retching, and eye roll, IS scary. I’m sorry hon. But the sun does rise, and do down. Even with all the unpredictability, you can pivot and respond. Trust yourself. You’re building agility beyond anything you could’ve imagined.

You’re using all your communications and leadership training, the microbiology and science knowledge and project management skills…

SO you’re NOT just a tool, it’s not just your presence that counts the three of you have a beautiful love bubble. Fragile, yes, but being together makes the difference. You are making a difference.

Remember: you don’t need anyone else to validate your experience, we know. Listen to your head, heart and gut. I’m with you. Everyone’s experience is unique, don’t try to qualify or compare. We’re all perfectly imperfect humans.

Throughout everything, you and Mum will become even closer. You need each other for what’s to come. You need your friends-family even more now. Don’t second guess yourself about living between ‘home-home’, Brussels and friend’s places—make the most of those breaks. You do survive to thrive, I’m proof of that.

Love you hon.

For Discussion:

Despite having experienced a lot of changes over my career, the unpredictability of change was the most scary piece caring for Dad; ‘waiting for the next shoe to drop; walking on egg shells’.

The inability to prepare for a change meant I hoped for the best, tried hard to plan for the worst and just be primed. So, agility became an essential skill for me. Going with the flow was not a relaxed state of mind; we had to be hypervigilant.

• How has your adaptability or agility changed since becoming a caregiver?

• If you’re not a caregiver, what resonates most for you?

• What, if anything, has helped you having read this letter?

Please ‘❤️’ LIKE the article & consider subscribing!

Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

© Carer Mentor, September 25 2025. This concept/theory/poem is original to Carer Mentor™ VLChin Ltd. If you use it, please give credit and link to the original work. Thank you. www.carermentor.com

1. Myers Brigg Personality Test and 16 Personality Types

2

The Herrmann Brain Dominance Instrument (HBDI) is a system to measure and describe thinking preferences in people, developed by William "Ned" Herrmann (1922-1999)

3. National Employment Office Belgium. ‘Congee thematique’

Procedure for requesting thematic leave.

‘Medical assistance leave’. This is for you to care for a member of your family or household who is suffering from a serious illness

‘Leave for close carers’ : this leave can be taken, if you are recognised as a close carer, in order to provide help or support to a person who, due to their advanced age, state of health or disability, is vulnerable and in a situation of dependency.

4. Belgium: The ONEM is a public social security institution that manages the unemployment insurance system as well as certain employment measures. It is also responsible for the career interruption and time credit system in Belgium

5. How and when to take glyceryl trinitrate (GTN)-Brand names: Rectogesic, Minitran, Glytrin