A Caregiver's agility wears thin
The only constant is change, so we adapt again.
Hello, dear Reader, and a warm welcome to all you lovely people who recently joined! Thank you for spending some of your precious time and energy here.
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
It’s a little mix of things in today’s article-newsletter.
Evolution: I’ve evolved the website (desktop version of the publication), which is the best way to view, access and navigate the wealth of resources in Carer Mentor.
Constant adaptation; agility. Even after a decade of caregiving, I’m still having to learn new pre-emptive ways and backup plans to compensate for unreliable services. Sound familiar?
Stress aggravates grief, especially when YOU’re the advocate and buffer-interface.
…and that’s why I’m planning some Me-time Respite.
Evolution: Our community is growing, and so must the website - slowly and at an empathetic pace.
Carer Mentor offers heartfelt empathy when you feel isolated and have limited time/energy. A hub of practical tools, resources, and insights. A portal of hope.
The Website (desktop version) offers easy navigation of all the articles. I recommend viewing the whole website in a desktop version to navigate through the various indexes and interlinked articles.
Alternatively, download the Substack Mobile app to read Carer Mentor on the go. This is the best way to save and read a specific article in a waiting room, in a shopping queue or on the bus!
Now, there’s a Community Outreach space. ‘Community Outreach’ enables us to meet each other and share thoughts on specific topics.
The Back-office Support/Signposting (BOSS) articles will offer insights into Carer Mentor’s publication journey. The first provides a directory of articles by Substack Experts for readers seeking support writing a publication.
How does this all fit together as a website offering?
Take a look at Who Started Carer Mentor and Why? Updated February 18th.
The Community Outreach discussion threads will remain open to allow everyone the opportunity to engage at their own pace— when there’s an opening in the care routine, when individual energy permits, or simply to accommodate readers in different time zones.
When you have a few minutes, please comment on the discussion and reply to someone else’s comment. Let’s continue to build support for each other.
Constant adaptation.
Even after a decade of caregiving, I’m still having to learn new pre-emptive ways and backup plans to compensate for unreliable services. Sound familiar?
Context: The car battery decided to tell me it was low the morning of one appointment. Cue a call to the service garage. I just hoped the car survived long enough to get us through the morning appointment.
Home, phew. I take the car to the garage, and they offer me a ride home. Next, I called to reserve a taxi for the next day.
The taxi company is the largest taxi service in this city. They were great with Dad in the wheelchair. There may have been more WAV (Wheelchair Accessible vehicles) 6 years ago.
I asked for
a low car as Mum can’t get in and out of a car easily.
enough space for a foldable wheelchair
emphasised the need for the driver to wear a mask. ‘Please can you make sure they’ll wear a mask so I don’t have to argue with a driver when I have other things to worry about?’ I used explicit words like cancer and immunocompromised.
I’ve had a few glitches with them before, but not like this.
The result? A 4x4 pulls into our driveway late. At this point, my brain has already started whirring on alternatives, looking at my watch and at Mum while we move outside.
The driver, a young woman, doesn’t leave the car until I stand waiting for her. She sees me holding Mum and the wheelchair, masked with my hands full.
When I ask her to wear a mask, she says she gets ‘bad skin’ from them. I would’ve hands-on-hips-cocked-head and given her full attitude if I hadn’t still got the wheelchair and Mum attached to me.
So, I have to get directive and insist. Adrenalin is starting to raise my blood pressure.
She says she doesn’t have a mask, so I tell her I’ll get one from inside our house for her. Her slightly sulky, pleading look must have helped her get what she wanted from others, but skin irritation does not trump cancer and immunocompromised!
I think I said to her that Mum has cancer at least three times, and I spelt out the need for us to protect ourselves because she’s got low immunity1.🙄
Then the wheelchair gets hoisted into the boot, standing upright (not folded, lying down, or off its wheels). At this point, who cares? I’m too busy trying to ensure Mum doesn’t fall out of the car when she tries to get up and onto the seat without a step.
Note to every ‘BIG’ car driver: raised cars aren’t great for elderly hips. It’s not just the height. It’s also the fact that the passenger needs to swivel to get into the seat. A risky move if they’re not far enough inside. It’s a movement we younger folk take for granted. Not easy for Mum.
Fuming and stressed, I was a whisper away from pulling the wheelchair out and returning to the house.
Imagine the slide side-to-side the wheelchair did around the sharp bends she took. Scuff - bang…scufff-bang.
The driver then complains, ‘It’s not easy to breathe in these masks, is it?’ Is she seriously asking for banter or sympathy right now? 🤪 🙄 The masks protect us; they’re not meant to be lovely and comfy for F's sake!’
At that moment, I concentrated on my breathing and calming myself down. Placate and educate. If you don’t say something, you’ll be more mad at yourself later.
‘Well, thank you for wearing the mask because that helps protect us!’ I was NOT going to say ‘sorry’ or apologise for her having to wear a mask.
These are the moments when we expend more energy than initially planned. We’re frequently pushed into situations where we have to regulate our emotions quickly so that we can move on…pay, get out of the taxi, get the wheelchair, and get to the appointment.
We may/may not have the time to complete the stress-cycle2 of emotional turmoil or be able to create space, pause and objectively assess our response.
The most helpful in-the-moment tools I use:
Focusing on my breath (try box breathing) to let the anger/frustration/ stress wash off and out of your body like water.
Grounding myself to the physical things around me: what I’m sitting on or standing, listening for small sounds, taking in smells or touching the seat. I use my senses to zone into external ‘data inputs’ and connect me more with what’s around me, away from the inner turmoil.
In the early days of caregiving, this situation may not have irritated me as much, or when it was a single event now and again—these days, with a few appointments close together, I always know there will be an issue. I’ve come to expect it.
Thankfully, we didn’t have to wait too long for Mum’s appointment, which went smoothly. I checked that Mum was okay and her hip was okay.
The taxi ride home was smoother, although the wheelchair assisted taxi I had prearranged said he was on another job…but that’s another story.
The balm over this episode: Our car had been serviced, and the battery was charged (we didn’t need a new one—PHEW!). The car was cleaned (!) returned to our driveway, and the keys were posted through our letterbox. Bless those car service guys!
I'm very grateful for the relationships and support services I’ve curated and nurtured over the years. Community is not just friends and neighbours; it also includes reliable services that walk their talk.
My recommendations:
Maintain a good relationship with a good service garage that can charge your car’s battery overnight3. OR get a solar-powered car battery charger. 😊 I did that for a few years, but our lovely garage service checks the brakes and washes the car. A car health check is worth it to avoid all this taxi stress. I’ve already booked another overnight stay for our car. It needs some TLC (tender loving care), too!
Identify a taxi person you can pre-book with AND rely on as a backup to the backup. I’m searching for a new one now. How many backup plans do you have?
Trust your gut. If you think it’s better not to attempt to get in the taxi or car, don’t. I trust my gut, having aligned it with Mum over many years, so I don’t have to second-guess my decision. I can tell you the exact moment when Mum and I committed to getting into the car, despite the unhelpful driver and high seat. Do what’s right for you and your loved one. If you’re unsure, err on the side of caution—better safe than sorry.
I’ll take a small box of chocolates and card to our service-garage soon. Even if we pay for their service, thanks and gratitude are essential when so many other services are unreliable.
If you know someone in your community with regular or several appointments, could you be their backup person, driver, or support?
Watch out for when stress aggravates grief.
When YOU’re the advocate and buffer-interface, frustrated anger can trigger the most aggravating grief waves. Hands up who hates tears when you’re angry?
For me, grief is love persevering in all its human messiness.4
When Still By Victoria (February 15)
When still my heart cracks at memory's sharp blade piercing hard the shield of grace bravely held with love upright, not hate nor fear, despite the dark blindness of night. The seismic scars of fissures born of fate Keep this body cloaked tight perpetually bound in a heartbreak state. So I mirror the memory, even with the bittersweet pain of love lost over time. A balm of soft care can restore some grace and fuel love's light, a beacon, not shield, to warm and shed the cloak of fear and need for flight. To build new memories, to sheath the blade, bring comfort while observing the cracks because I am, Still. Despite heartbreak here and CAN thrive. When still, With Love.
The conclusion? I’m planning some Me-time Respite
I recognise the brain fog, tiredness, and edginess. Please avoid clichés or ‘you can’t pour from an empty cup’ stuff.
The lovely sign from the world was when the website went down most of Saturday due to an issue with the host domain. Digital speak for ‘you’re forcibly disconnected,’ go chill! So a few days away is in the works…
A last word..
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We had a bad experience with Mum, then myself getting COVID and pneumonia from a short visit with relatives at the end of September 2024. Mum was hospitalised for 4 days, and I camped out in the hospital room to avoid her being discharged during the night. So, we’re sensitised to the impact of short-distance transmission.
Recommendation: 'Burnout and how to complete the stress cycle. Emily and Amelia Nagoski'
Just because you’ve dealt with the stressor doesn’t mean you’ve dealt with the stress itself. The stress cycle is incomplete, the emotions can linger in your body.
When your car journeys are short - to hospitals, shops and GP surgeries- the car battery doesn’t get charged enough and can steadily deplete over time.
Two articles I wrote sharing some personal reflections and resources :
Eek! So sorry all this happened. I'm glad it ultimately worked out. I'm also glad you are seeking some respite time. It's so hard when our situation doesn't allow for extended periods of rest, but even getting away for a few hours can make such a difference.
Wishing you the best!
You are so much kinder than I! My reaction to the driver would have been a sympathetic “Yes, and just imagine how much harder it would be to breathe if I had to haul you into court for deliberately causing grievous harm to my sick mother!”
But you are a good person. 😀