It’s not easy to explain, but I’ve known this was coming for a long time, and been preparing for it. Spending most of my time living back with my parents that is.

While it’s strange, and I miss being on the boat and with Barry, there are a few positives. I feel incredibly blessed to be able to give back some of the time and love my parents have given to me over the last 54 and a half years. And it’s good to just ‘be still’ and reflect for a while.

Navigating the system

It’s taken me over 12 months to even scratch the surface of navigating the system of ‘caring for the elderly’ in UK. I finally feel as though we’ve arrived somewhere, with equipment and people around to provide support. I just wish it wasn’t such a complex and confusing process. Or maybe it’s just me?

We now have Social Services on stand by should I/my sisters, not be able to continue to provide care for dad, and mum, 24/7 (though I have yet to complete the pages of information required about their finances to see if they’d have to contribute to this or not), we have the district nurse involved and providing a myriad of aids in the home including a raised toilet seat and frame, a ‘perching stool’ for perching on (naturally!) whilst washing at the sink, a walking frame with wheels, and a step up to the shower cubicle.

My younger sister and I have spent months sorting out such necessities as Lasting Power of Attorney, investing mum and dad’s meagre pensions to buy a special armchair which raises and lowers, and most recently and expensively a new bed that has similar capabilities, with separate mattresses for my parents to enable them to sleep better. I’ve also worked through the quagmire of forms to apply for Carer’s Allowance and Attendance Allowance.

Dad’s mental and physical condition is variable throughout the day and night, sometimes lucid, more often confused and talking about a diverse range of memories or imaginings.  And we’ve been quite limited in what we can do to occupy our minds, as there’s concrete stairs at the front and back door of their home, so it’s not safe for me, alone (or with my mum), to get dad out of the house.

However …

We had a helping hand on Monday when Barry visited us, as he’d come by bus, from Kidderminster, to the local GP to present his passport in order to get registered there (one of the challenges of continuous cruising). So we grapsed the chance to escape into the fresh air!

The dark side of ‘old age’

There’s been a flurry of media activity in England recently about the immense concerns of the care elderly people are receiving. Mary Beard, in the BBC News Magazine on 9th May, writes a heartfelt piece on The Paradox of Growing Old which addresses many of my concerns about death and dying well.

“What is worrying is the thought of what might happen to us if we cross to the dark side, to the Tithonus side, of old age. Past the senior railcard, to a world of incapacity, indignity and incontinence.”

Last year I read Jennifer Worth’s (the author of ‘Call the midwife’) fascinating book called ‘In the midst of life‘. She relates her nursing experiences of people dying well, and those where health professionals and/or families had extended the life of those ready to die and where their demise was long, often painful and drawn out, and in a few cases heartbreakingly awful.

On that note, Mary Beard also suggests:

“I can’t help thinking here that some of the modern medical profession have made much the same mistake as the goddess Dawn. Why on earth, when so many doctors themselves wish for a quick death from a massive heart attack, do they expend such efforts (and money) in preventing their patients from having exactly that, consigning us to the expensive and nightmare world of the very old and the very decrepit?”

We didn’t watch the recent Panorama programme about the mistreatment occurring in some ‘care’ homes in the UK, regular readers will know we don’t have a TV. But we couldn’t fail to hear about it via social media. As an ex-nurse, I’m aware of the challenges. I spent a few months in the geriatric ward as a newly qualified ‘Staff Nurse’, and during my midwifery training, to earn a bit of extra money, tried a night shift in a residential home – one was enough! The next day I said to my girls that if I ever got to that stage would they please suffocate me rather than put me in such a place.

I’m sure there are many fabulously well run residential homes for the elderly too, with compassionate and caring staff providing excellent services to their residents. I’d just rather my parents didn’t have to go there, if at all possible.

“I don’t think anyone could have watched these programmes without feeling ashamed – to see old people crying because no-one will take them to the lavatory, to see them being ridiculed, abused and hit, was deplorable.”

However, I am a realist, and have no idea how long I can sustain this level of care for my dad, and mum. I’m very aware of the possibility of it becoming too much for me and my sisters, and needing support from others. Dementia is a degenerative condition, and the effects of the strokes are very apparent. For now dad’s more confused each day, with moments of lucidity. But should he become more truculent, which he is at times, then it will be far more challenging.

From stroke to Stoke

In the meantime, Barry’s moving on up towards Stoke for The Home Brew Boat’s next trading event at Etruria. Jim, previously from NB Starcross, arrived yesterday for a couple of days cabin crew support. Thank you Jim!

Well we thought it would be The Home Brew Boat only trading at Etruria, but I’ve heard recently that their booked face painter is no longer available, so I’m welcome to paint away. Marvellous. And another newsworthy note is being extremely flattered to have a photo of me, at ‘work’, published in The Droitwich Standard last Friday. Check it out. What do you think?

So it’s next stop Etruria, so long as dad’s stable and there’s someone to tag to take over here. In the meantime, I may get a chance to visit Barry and Areandare again this weekend …