Lost in a Lonely Place…

My 85-year-old dad has vascular dementia, and his particular dementia demon means his mind often plays cruel tricks with his sense of time and place.

In general he still knows who we are, the members of his immediate family, which is lovely for us. But sadly it also means he’s not always ‘with us’ in the here and now, he regularly becomes ‘lost’ in a place that we in our current form don’t exist in. Even at home, in the house he’s lived in for 48 years, he often becomes ‘lost’ in himself. Sometimes nothing looks familiar to him, and he finds himself a foreigner in a strange place. Yet at other times he finds he’s somewhere he knows very well – unfortunately it’s not the same place as the rest of us are in, but it’s very real to him…

Dad is currently in hospital after a bad fall at home, and I knew as soon as I walked on to the ward last night that he was feeling ‘lost’. His brow was slightly furrowed and his eyes were constantly looking around, bewildered. As soon as he saw me he said with some urgency ‘We have to get out of here, we’re in the wrong place’. I asked him where we were and he said ‘We’re in Mary McRae’s house – look around, can’t you see? We need to be next door… the next house’. I asked how we get there, and he gave me clear directions to a house we lived in 50 years ago – and Mary McRae was indeed our neighbour at that time.

When dad first started his internal time-travelling, mum worried that he was perhaps delirious, imagining things, babbling incoherent rubbish. But we soon realised that dad’s brain was taking him to real times and places from his past, and almost superimposing those memories onto the present, like an old film-reel running against whatever real-time surface it meets. In his mind he’s in his childhood home, or completing his National Service, or deeply entrenched in some other precious memory from the past.

Tonight I visited dad in hospital again, and thankfully he was looking a lot more settled, but as soon as he spoke I realised he was still ‘lost’. ‘Did you come by train?’ dad asked me – I told him no, I took the bus up, there is no train. ‘But you got off the same train as Bill Smith’ he insisted. I gently reminded dad that Bill Smith lived in Stonehaven (about 110 miles away), and we hadn’t seen him for about 20 years. Dad looked puzzled – ‘Aren’t we in Stonehaven?’ No, I told him, we’re in Inverness, you’re in hospital after a fall.

Dad remained consistently confused about our current location, and wanted to know how I’d get home, was I going to be staying with Bill Smith and his wife? And where was dad going to be staying tonight, was he going home on the train, did he have to book a hotel, how much would it cost for a night, did mum know where he was and that he wouldn’t be home tonight? I reminded him he would be sleeping in the same hospital bed as he slept in last night, and patted the bed cover next to us to remind him. ‘That’s not my bed’ said dad, ‘I’ve never seen that bed in my life before… Where am I going to sleep tonight?’

And so it goes on. This is always dad’s biggest worry every evening – where he will be sleeping. The nurses on the ward were concerned dad’s growing confusion was because he was in the unfamiliar surroundings of the hospital, but I let them know that sadly this happens most nights at home, too. Dad’s ‘lost’-ness is internal, not based on external location.

There can be no comforting him, no lasting reassurance to be offered. Just variations on a theme of the same repetitive conversation, played out night after night, dad fretting moment by moment about where he’s going to sleep, lost in a lonely place inside his own mind he can never escape from, frustratingly out of reach of reality…

Fandango’s One Word Challenge: Trick

Booking In for a Hospital Visit

My 85-year-old dad recently had a bad fall at home so has been in hospital for the last few days, spending the first day in A&E and the second in a short-stay ward before moving yesterday to a proper Care of the Elderly ward.

The last time he was in hospital, early on in the first Covid pandemic lock-down, no visitors were allowed at all so we didn’t see him at all for five weeks, from admission to discharge. We could of course speak to him on the phone but for an old man with dementia that was really difficult to deal with.

This time around, however, limited hospital visiting is allowed. You have to book a visiting slot in advance to ensure there are not too many people on the ward at one time, and you have to stick strictly to your allotted time, but the point is we’re allowed to visit, which is wonderful! I actually had my outpatient hip X-Ray done at the hospital yesterday (it went fine, results available from my GP in two weeks) so I booked a visiting slot with the ward immediately afterwards. It was so good to see dad, to see him content and well looked after – his confusion is quite bad, and his mobility is awful, but it was so reassuring to see him in the flesh. I had to wear my mask for the whole visit, but at least I got to see him.

They think dad had been particularly unsteady on his feet at home due to a urine infection adding to his usual poor mobility (because of right-sided weakness due to several strokes in the past). The urine infection also exacerbated his usual dementia confusion, then to cap it all a bad bump on the head due to the fall gave additional cause for concern. I mean, how do you test for concussion in someone with dementia? Thankfully his CT scan was clear, so no lasting damage done, so he just needs to get clear of the urine infection and back on his feet before being discharged.

I’m booked in to visit dad again this afternoon, so hopefully he’s a little bit better today… 🙂

Stream of Consciousness Saturday: Boo

Body Parts

OK, so Linda wants us to blog about body parts for this week’s Stream of Consciousness Saturday… But which body parts should I write about?

What about my monkey-mind tangental brain, thinking myriad random ramblings 24hrs a day?

Or my vulnerable heart, sensitive and scarred, permanently open to both hurt and hope? And love, of course, don’t forget to include the love… ❤

Maybe I could focus on my eyes, ears, nose, mouth, skin – the physical touchy-feely sensational parts of me?

But I have to say the body parts foremost in my consciousness right now are the bits that are failing and slowing and seizing up – so in particular my right hip that is currently paining me night and day, internally screaming like a silent rusty hinge as I wait patiently for an appointment for an X-Ray to see what the joint damage might be… And ooh look, that means I can use this post for Fandango’s One Word Challenge too – result! 🙂

Finding My Feet…

To be honest I’ve never really found it easy to find shoes that fit comfortably but I’ve usually had fun trying on plenty of potentially promising contenders over the years, even though our perfunctory podiatric interactions regularly result in discarded dreams and disappointments all round.

I’m like a bare-foot Cinderella in reverse in the sense that it’s me going round every shoe store in the kingdom asking ‘Does this shoe fit? Nope’… Does this shoe fit? Nope’… Even shoes in my ‘correct’ size are often too tight or too unforgivingly stiff or in some other way just too wrongly shaped for my feet… Without the benefit of finding a magical store called ‘Glass Slippers R Us’, shoe-shopping for me has often been an insurmountable quest with questionable success.

My UK size 4 feet are technically short enough to fit into the bigger sizes of kids’ shoes, and when I was younger this sometimes proved to be a far better option for me than shopping in the women’s section. But nowadays although my heels are still narrow I have rather a high instep and a steadily-broadening middle-aged midfoot, and when I’m walking my toes far prefer to splay out comfortably rather than be crumpled into a too-tight ill-fitting toe-box, so sadly the days of me finding kids’ shoes that meet my specific criteria are long gone.

Mind you nowadays as even the smaller sizes of adult women’s shoes can be far too narrow for me I often find myself either searching out so-called ‘wide-fit’ designs or alternatively buying a whole size bigger in an attempt to accommodate the specific spatial needs of my fussy feet. And on top of all of the frustration of slim-line form-over-function design derailing the whole process for me, the painful pull of plantar fasciitis has created additional restrictive requirements in my futile search for the perfectly fitting shoe – namely good insole cushioning, proper arch support, and neither too high nor too low a heel.

And now it seems I also have to start to accommodate the needs of an increasingly arthritic hip when considering my footwear choices on into the future, although to be fair what works best for my plantar fasciitis also works best for my dodgy hip as long as the resulting shoe is reasonably lightweight too. Fashionable trends – not that I’ve ever been a dedicated follower of fashion in footwear or any other wear for that matter – have necessarily taken a complete back seat in my recent deliberations and decision-making.

Nowadays I simply wear whatever fits that I can walk in comfortably that doesn’t offend the eye. Still, I might not be in the slightest young and trendy any more but I don’t necessarily want all my shoes to be boringly bland – where’s the fun in that? Maintaining mobility may matter more than anything else but I’d still prefer funky over frumpy footwear any day. So I’ve got a sneaky suspicion that all things considered, finding my feet when it comes to choosing comfortable footwear that looks good too might take me even longer than before to get right… Sigh… Good job I like a challenge!

If…

If… Such a small word, such big consequences… It can suggest an infinite expanse of hope shimmering on the horizon, heralding the promise of better things for the future. Or it can sew the seditious seeds of doubt that can grow malevolently into a dark and twisted bitterness that sours the soul…

Stream of Consciousness Saturday: If

Covers and Seals

I know someone who used to run Tupperwear parties, and she was always correcting me on my incorrect use of the word ‘lid’ – apparently Tupperwear don’t actually DO lids, they do either covers or seals. Apparently a cover… well, covers the vessel in question and a seal… um, actually seals the stuff in… But in my book both covers and seals are still types of lids, so there we go… 🙂

Stream of Consciousness Saturday: Lid

Settling and Accepting…

Fandango asks a really thought-provoking Provocative Question this week, and is actually one that I’m pondering in real life right now. He asks:

Do you see a difference in settling for things and accepting the way things are? If so, in what way are they different? If not why do you feel settling and accepting are the same?

Hmmm… Well, the convoluted back story to my rambling answer is that I’ve had ongoing/ recurring problems with the ligaments in and around my right hip since my late teens and early twenties, when I was pregnant with my three kids for pretty much three years in a row.

I was diagnosed a long time ago with a Sacro-Iliac Joint Dysfunction which is annoying and extremely uncomfortable more than anything else and frustratingly it still plays up occasionally (usually when I’ve inadvertently done something to it), needing some concentrated targeted exercise on my part to mend – until the next time it plays up.

My kids are now all in their late 30s and I’m in my late 50s, so one way or another I’ve been dealing with my dodgy hip/ lower back/ leg pain on and off for a long time. By now I generally know when to rest it and when to push it to work it off, and it’s got me this far so I must be doing something right.  

Recently, however, I hurt my hip while mowing the grass in the garden – not actually that unusual an occurrence for me. I kind of turned and twisted at the same time while turning the mower around and my hip protested immediately, admittedly to an acute level of pain way beyond the norm – it felt a bit deeper, somehow a bit more than I’d had before.

I tried my usual programme of a few days or so of deliberate rest and exercise and anti-inflammatory pain medication but although the ligaments and muscles seemed to be moving OK the internal hip pain remained and if anything, it got worse as time passed. So after a few weeks (I’m nothing if not stubborn!) I finally accepted maybe something else was wrong and I probably needed to see a doctor.

The doctor duly arranged for me to see a physio, and after a thorough manual examination the physio diagnosed osteoarthritis within the hip joint itself. I’ve got to have an X-Ray to confirm exactly how much degeneration/ disintegration there is, but it seems there’s not much doubt as to what’s causing my hip pain.

I have no more range of movement with passive manipulation of the joint than when actively moving my leg myself, and although my left hip allows for an easy 40 degree rotation before it meets any resistance at all my right hip sticks fast at a measly ten, at which point it absolutely hurts like hell, screaming in its refusal to move beyond the barest minimum.

The rest of the physio consultation consisted of discussing potential treatment of what is clearly going to be a long-term problem to learn to live with – no quick fix, no cure, just a sensible programme of mobility management on into the future, and the sooner I start thinking about that, the better. In one sense, it’s no big deal.

It’s an age-related wear-and-tear arthritis in my hip, so it’s inevitably going to slow me down a bit – I mean it already has slowed me down these past few weeks, it’s been depressingly debilitating at times – but it’s not something that’s going to kill me. I’m going to need to support and protect my gradually disintegrating hip joint as best I can from now on, carefully doing just enough to keep it strong but not enough to exacerbate it.

So here’s where the settling/ acceptance thing comes in. In my current situation I have no option but to accept that my ongoing hip problem is now a lot worse than it was, and clearly I’m not going to be able to continue to manage it in quite the same laissez-faire way as I have for the last thirty-odd years. I’m not going to be able to carry on doing everything the way I’ve always done it, and some things will have to change, like it or not.

Even now physically I can’t curl up on the sofa, because already my hip just doesn’t bend that way so I’m sitting differently. I’ve already been sleeping with a support cushion between my knees for the last few weeks to allow my hip to remain reasonably level, otherwise the pain wakes me up every time I turn over in bed. And I already wear supportive cushioned footwear due to having Plantar Fasciitis, so that’s a start.

I realise I might have to start walking with a stick at some point to further reduce the stress going through my hip joint with every step – to be honest I’d probably find it helpful even now, although psychologically I’m not quite there yet. And I’ll have to change the way I do the gardening, maybe creating some raised beds instead and rethinking long-term access to the back garden (currently via stone steps leading down from the patio).

But one of the reasons we bought a bungalow in the first place was due to looking ahead to potential mobility problems as we got older. This is maybe a bit sooner than we’d intended for contemplating such considerations but the planning was already in place for accommodating such a change in circumstances once we’d retired.

Thinking about the way I like to live my life now, I’m sure I can adapt the way I do some things – most things in fact – but probably not everything. Only time will tell. So for those things I will have to give up at some point, is that going to be me settling for something less than ideal, or simply accepting my new reality?

I think for me it will necessarily be more of a positive acceptance of my new limitations, because in my mind the idea of just settling for something sounds unacceptably second best, as if you’ve decided to spend the rest of your life mourning what you simply can’t have or can’t do instead of focusing proactively on what you still can do and still have in your life.

Perhaps what I’m saying is that once you’ve done everything you possibly can to improve any given situation, whereas ‘settling for something’ sounds to me like taking a glass half empty approach with something notably and regretfully missing from the past, ‘accepting the way things are’ is more about looking at the glass as half full of possibility and hope for the future, and personally I know which I’d rather do…         

Dark and Brooding

I tend not to feel too much like colouring in (or much of anything else, actually) when I’m feeling the heavy weight of depression dampen my soul, but today in spite of my dark and brooding mood I thought I’d push myself to make the effort… And here’s the dark and brooding result, with a far higher concentration of grey and black than I’d usually choose in this standard mandala design… Definitely different from my normal choice of multiple bright colours, but I suppose it still counts as creative nonetheless! 🙂