Personal reflection: 'Home-aids & Starting the Care Discussion'.

You can’t un-see risks, once your lens is turned.

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

I hope you and your loved ones are well.

These days, I have a physical reaction to daytime TV, and it’s not good!

When I see retirees in programmes like ‘Escape to the Country’ or ‘A Place in the Sun’, UK television programs where couples search for a new home or holiday home - I cringe.

I wince at the remote locations or the stairs and narrow passageways. Not because I have a particular aesthetic style, well, I confess I probably do have a minimalist style over ‘cottage style’, but my lens is heavily skewed elsewhere now.

In my head, I’m assessing homes in terms of accessibility for stretchers, ambulance chairs, fall risks on narrow stairs and other potential safety hazards for an elderly person with mobility or heart issues or increasing frailty due to …well, getting old! [And ‘scuse me, I’m getting older, but this isn’t about me! ;-) ]

I’m calculating the time to the nearest hospital. The ability of an ambulance to navigate down a narrow, windy country lane and find the house/cottage in the middle of the night. I’ve found that Friday, from midnight to 3 am, is THE most prolific time for every crisis.

Most of all, I’m looking at the chocolate-box cottage and wondering how the couple will manage the place, cut the grass, repair the thatch, manage flooding, prune those trees, or dust all those tiny spaces! All fall-risks.

And why spend so much of their London flat money when they may need it to hire carers or make a wet room on the ground floor?

Ouch. This is how crises and caregiving have impacted my outlook.

On the other hand, I’ve heard and seen the wonders of a village community. A tag-teaming of pharmacy runs, meals and checks on its vulnerable members. Sometimes, everyone knowing each other’s business is a big plus.

Think ‘Miss Marple’s’ St Mary Mead or ‘Midsomer Murders’ villages with pubs…just without the murders! [Guess which Sky TV channel Mum loves!]

Or a small group of a few community-minded, well-organised locals willing to network a care system! Heart-lift people restoring faith in the neighbourhood, the definition of community support! Father Brown’s housekeeper?

COVID accentuated these home fires of help burning in small pockets around the UK. These community support groups are inspiring and locally organised. Try to investigate what community support is available; you may be surprised, or ask Carers UK via the helpline. Or here you can see if there’s support near where you live in the UK.

If you’re less familiar with the care situation in the UK, Glimpse into the UK care situation here.

Unlike childproofing a home, adding or using home aids is a choice that can be refused easily by adults of any age. Like most things, people don’t like to be pushed or manipulated into a choice. So, home aids are often only considered after a crisis happens.

Any change in daily habits can be difficult. Any change linked to becoming more frail, losing independence and touching mortality is filled with dread and fear. No one is right or wrong in difficult conversations about ageing. We’re entitled to our opinions.

Dad had various surgical interventions over the years, including quintuple heart bypass, titanium knees, hip, straightening fingers, toes, and tendon stitching. Heart failure and rheumatoid arthritis were complicated in 2016 with bladder cancer and organ damage. Alongside all this, we were forced to have ‘THE Talk’ repeatedly.

‘The Talk’ started ‘way back when’. It comprised me retrieving the ‘Grey folder’ and Dad walking me through critical contacts: solicitors, funeral directors, etc. and his wishes. It's not exactly something a 14- or 15-year-old wants to hear, and for a while, I riled and recoiled. Then I just listened. I often found that he needed that reassurance. I had listened and understood - messages received loud and clear, over! Roger, check!

Despite all his preparedness about the practical logistics and our complicity, we were still unprepared for the long drawn-out palliative to end-of-life care.

For Dad, Mum, and I, living safely, with dignity, and much love was/is our priority. But there was a long rollercoaster of small, additive, repetitive piecemeal discussions, arguments, passive-aggressive, tense moments, and much more to get aligned.

Unfortunately, there were also some heart-wrenching moments when I knew Dad was ‘just complying’ because there was no safe alternative or choice. Seeing the fire dim and fear grow behind his charismatic, mischievous, and fiercely proud eyes was terrible.

How I initiated the discussion

In hindsight, I can offer a smooth narrative now, but I can still remember those stressful moments when the choices and approach were unclear. It was an exercise in forming and storming, with hit-and-miss norming and little time for performing before the subsequent ‘step-down’ decline (see the article on this model). I was in ‘project management mode’, treading softly, empathetic, eager and a little scared - then a lot scared.

We started with the most functional home aids that offered the most obvious benefits. Grab handles and motion lights provide more support and visibility at night. These easy inserts made the next idea of a bedrail more plausible. [Five home-aids article is here]

We bought all these things privately and implemented them rapidly because Dad already had minor falls at night. An everyday cane can lead to a fall if it drops to the ground and needs retrieving. Hence, the stand-on-its-own cane. Dad hated it! Perhaps because we had our own little ‘conga-dance’ to and from the loo. He was in front and I stabilised him from behind or to the side.

Occupational therapists and social care can perform a needs assessment in the UK to identify aids for the home. Experienced carers debate whether they’re ‘worth the effort?’ The reality is that it’s a postcode lottery as to how quickly and efficiently one is done.

In my opinion, the benefits outweigh the risks, the hassle and the time we have to invest to make it happen. However, that depends on what you’re dealing with when your request is fulfilled (NB. there can be a big gap between request and assessment). For most, there is an immediate need in a crisis on top of everything else - kids, work, etc.

The trouble is the burden of ‘making it happen’ always falls onto ‘the most obvious person’ - that might be the partner/spouse or the son or daughter, the eldest or the closest…in the end, all these labels become synonymous with ‘caregiver’. It’s like a precursor to ‘Caregiver’. An unspoken assumption and emotional burden on one person. Are you the obvious one? Do you want to be? Are you reacting or planning ahead? Important questions to address and not avoid.

‘Making it happen as a carer’ is an encyclopaedic topic. Some chapters could include

• the many hats a caregiver wears

• a carer is the ‘glue’ connecting the fragmented transactions and providers

• offering unconditional love and comfort when your heart is grieving and disintegrating.

• a big soapbox chapter would be dedicated to ‘Never assume that… it will happen, or be communicated or available.

• Prime your heart, strengthen your back support and get ready to hustle

Eventually, we had a good, empathetic experience to get home aids. An assessment happened after we’d established what worked for Dad. So, everything except the toilet seat-riser frame went into the garage a day after it arrived.

As always, I’d spent a lot of time with Dad patiently, explaining and testing the use of the equipment. It was clear Dad was frustrated, tired and fed up. The equipment offered no added value, so we ditched them. Love and care aren’t always about ‘being right’, pushing the use of one thing into the routine.

Because we had a routine and system with the equipment we did have, I like to think he and we were ‘safe-enough’ and ‘comfortable-enough’. After all, Mum and I were his principal 24/7 stabilisers and support.

This is a luxury only open to some. Many ‘obvious ones’ sleepwalk into caring or juggling family, work and eldercare or are trying to ‘manage it all’ as part of the ‘sandwich generation’.

Being a carer and caring must be a choice, and everyone within the routine must be safe and comfortable. But these days, this is more of a visionary aspiration than an attainable goal for most people in the UK.

For us, comfort, habit, safety and familiarity overruled efficiency and speed 99.9% of the time. This is why empathy and listening are essential, but much easier said than done.

All of this comes with a lot of frustration and discomfort. Starting the conversations is imperative because more significant, harrowing situations happen next.

If you can align as a team: ‘the obvious one’, the loved ones being cared for, and every hands-on supporter you can possibly identify to add to your potential care team - you’re already well advanced in planning.

A last word on our current care routine: after everything with Dad, the bonus of caring for Mum now is that we’re absolutely in synch and have our routine aligned. Over lunch, we check what’s coming over the next few days and what we’d like to do, and then she watches ‘Countdown’ and her other daytime programmes.

I retreat to my little office space so I don’t need to cringe-watch retirees navigate the remote, chocolate-box village cottages and instead start actioning what we agreed.

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Apologies if I’ve tainted your outlook on ‘Escape to the Country’, a ‘Place in the Sun’. Now you have a few daytime TV shows to research!

You can’t un-see risks, once your lens is turned.

How have you started the ‘care discussion?’ Can you share any conversation traps or issues? Or what’s worked well?