New Year’s Resolutions

Fandango’s Provocative Question this week asks:-

Do you plan on making any new year’s resolutions this year? If so, can you share a few of them with us? If not, why not?

The trouble with new year’s resolutions is that ideally everyone wants to start the new year with a fresh clean page, turning over a new leaf, hopeful new beginnings and all that. Except of course real life always gets in the way before too long, reminding us (in the words of Robert Burns) that ‘The best laid schemes o’ mice and men Gang aft a-gley’. This time last year we were newly back in lock-down again and I was hoping that surely 2021 was going to have to be better than 2020 had been…? Yeah right…!

By last new year’s day I really wasn’t feeling all that well and to be honest I thought I was perhaps sickening for something potentially flu-like (not unusual for me during the winter months), but on January 3rd it was confirmed that unspecified ‘something’ ailing me was actually Covid. And since then for me everything has changed. Here I am just short of a year later a lot better, but still not anywhere near 100% back to how I was before. Granted at the time I didn’t ever get ill enough to be hospitalised, but I had no idea that many symptoms simply would not be in any hurry to go away and would dog me long-term, even now.

So this new year I’m going into it all with nothing more than the vague hope that in spite of ridiculously rising infection rates I simply don’t catch Covid again. As well as my own personal post-infection antibodies (probably from the Delta variant) I’ve had two AstraZeneca vaccinations and a recent Pfizer booster shot newly coursing through my system, but it seems with Covid and all its myriad mutations there are no guarantees so I’m certainly not assuming myself invincible.

We may well avoid facing any further planned lock-downs here in the UK but I get the feeling nothing is inevitable with this apparently indestructible virus. Two years on from when it first began and somehow it seems we are all still in relatively uncharted territory, lurching from one tsunami-wave infection crisis to the next. What has 2022 in store for us all? Who knows…

Covid and Me, One Year On

In two weeks’ time, on 3rd January 2022, it will be a whole year to the day since I tested positive for Covid. Which means it’s almost a whole year since I last felt properly well in myself. Although I wasn’t badly ill with Covid, as in not hospitalised, to be honest although I am now feeling a million times better than I was in January, a few of my most tenacious Covid symptoms have never fully gone away.

For the first few weeks afterward my initial infection I waited patiently for my symptoms to fade… and then it moved on to being patient for the first few months… and then I realised that like it or not I clearly had Long Covid, and it seemed it was here to stay. At that point I was hopeful that after my first vaccination my symptoms would miraculously completely disappear, but was disappointed to find it made no real difference to how I felt.

The first real glimmer of hope came with a partial return of my sense of taste and smell, which slowly went from zero to… well, not quite zero any more. And although much improved since then, both still come and go from time to time on a hap-hazard blunt instrument continuum of sometimes quite good, sometimes not so much. These days I rarely have nothing at all but sadly it seems I’ve lost any nuances of smell or taste. Whether or not it’s permanent I can’t say, but presumably only time will tell on that score.

Thankfully, though, after my second jab amazingly I felt as though a lead weight had been lifted from me health-wise. My extreme breathlessness improved immensely, and it was such a huge relief to feel so light-chested again, so much better than before. But however much my lung function was improved, two things soon became clear – ‘better’ is a relative term, as like my sense of taste of smell my breathlessness still comes and goes on a whim, and even at its best my breathing is still not back to pre-Covid levels.

Some days I can be reasonably fine, but on others walking any distance at all even on a flat surface can leave me puffing and panting and wheezing like an unfit heavy smoker running a marathon uphill. Other Covid symptoms which have improved over this past year but still remain noticably present are (in order of making their presence known on a daily basis) extreme fatigue and tiredness, dizziness (sometimes even when lying still in bed), and headaches.

I know I’m luckier than many – I caught Covid and survived. But I feel the whole experience has aged me before my time, and it’s one I’m in no hurry to repeat any time soon. I’ve had Covid, and from the timing of my infection it was probably the Delta variant. Since then I’ve had both vaccinations and my booster jab, but still I’m worried about catching it again. So far Omicron seems to be more infectious but less deadly – but again only time will tell.

Honestly, I get breathless even thinking about it…

Ragtag Daily Prompt: Breathless

Limbo…

For the past five years my elderly dad, dealing desperately with the ongoing difficulties of vascular dementia, has experienced an ever-moving mix of three potential states of being – fully aware of existing in the here and now along with the rest of us, stuck happily in some time-warp parallel universe where for him the past is strangely superimposed onto the present, or suspended scarily in an unfathomable limbo…

When dad was first diagnosed with dementia, of course he was mainly present in the present but with the odd random serious lapse of memory that was certainly more than one step beyond common-or-garden forgetfulness. The first real sign of dad’s depth of confusion came a few days after he returned from his brother-in law’s funeral. Dad was chatting to us about people he’d seen there who he hadn’t seen for ages when he suddenly said – I think I’ll give Ian a call to see how he’s doing. We couldn’t get dad to understand that it had been Ian’s funeral he’d been at to see all those people from his past in the first place…

And then dad started doing the occasional odd thing in place of the everyday thing he’d been doing for years. Like when making a cup of tea, dad would have the cup sitting on the counter upside down but not understand why he couldn’t put anything in the cup. Or worse, he melted the plastic bottom of three electric kettles before we finally stopped him trying to do things in the kitchen. On two occasions dad had filled the kettle then sat it on the hob to boil – the acrid smell of melting plastic had brought my mum running. And on the third occasion dad filled the kettle, balanced it on top of the toaster, and switched the toaster on.

Dad’s dementia is the vascular type, brought on by several small strokes, so as well as cognitive difficulties dad also has worsening mobility issues. In the past he has forgotten how to walk when half way across a room, standing precariously, leaning on two walking sticks and unable to move further because he doesn’t know what to do next. He has forgotten where he was in the process of walking to the bathroom, confused and bewildered and agitated because he needed to go to the loo but couldn’t find his way through the family home he’d lived in for 40-odd years. And we soon found that when dad was in a more lucid frame of mind again, he consistently forgot that he had been unable to do these things. When he was lucid he wouldn’t believe that he’d been so incapacitated, in his mind he was still fine which was so frustrating for him.

It was almost more difficult in the early days when dad was far more aware of his surroundings and what was going on in his brain. In a sense it has become easier as the dementia progresses and dad is spending less and less time in the here and now. We get the occasional glimpse of grounded reality but on the whole these days much of dad’s day is spent reliving random memories of his past in real time, often including people and places long gone. Knowing his family history we can join him there, and have perfectly enjoyable conversations that leave dad feeling visibly content. The other day dad was convinced I was his sister Edith, not his daughter Ruth, so we were chatting happily about going to visit an uncle and aunt along the coast. Everyone dad mentioned has been dead for years but his memories are so real they carry him through.

At other times, though, dad seems to lose his visual and experiential link to the past, but at the same time cannot quite reconnect fully with the present. These are the days where dad just looks lost within himself. He’s neither here nor there, stuck in limbo, and you can see the confusion in his eyes, traced on his furrowed brow. His speech loses its clarity, slurring a little, and often the wrong words come out so communication loses its vibrancy and leaves dad feeling even more lost. He says sometimes he hears my voice and knows I am talking to him but cannot quite understand what I’m saying, everything just sounds jumbled in his head. He looks intently into my eyes trying to make sense of everything but then soon he looks away, despondent.

It’s a horrible situation for him to be in but in spite of all of this, on the whole I find dad is still very much dad. Somehow deep down he has retained some of his dry sense of humour, which always fills me with such an overwhelming feeling of warmth and love. I asked him the other day how he had slept the night before, and he said with the merest hint of a wry smile – With my eyes shut! Oh, how many times over my lifetime I’ve heard that same response, and how wonderful to hear it now. I’m not in denial, I do know that dad’s mind is slowly disintegrating, but personally I prefer to focus on what we can still share together rather than on what has been lost between us.

Dementia really focuses me on the importance of spending whatever time I can with dad, while he’s still with us, while he still knows us. So I visit him, and sit with him, and chat with him. I hold his hand, and hug him and let him feel the familial security of the father-daughter bond that has always been so strong between us. We are where we are in life, but he’s still my dad and I love him as much today as I always have done… ❤

Life and What Matters Most

Fandango’s Provocative Question this week asks:

What’s the best thing you’ve got going on in your life at the moment?

It’s a really good question, and it’s really brought me up short. Life may be far from perfect for me at the moment, but I know in the past it’s definitely been a hell of a lot worse. Not only do I still have a lot going for me, but also I need to acknowledge that every cloud has a silver lining.

At grass roots level, the best thing I have going on in life at the moment is life itself. I’m still sitting here, safe and warm in my own home, with lots of people around me to love who love me too. I have food in my belly and clothes on my back and money in the bank and hope for the future.

OK, so I have a few annoying health niggles, but I’m a post-menopausal woman in my late 50s who has had poor health since childhood so perhaps that’s only to be expected. And yes, we have a few quite serious family worries just now, but at least I have loving family members to be worried for.

So there we go – I honestly think without doubt the precious reality of living has to be the best thing in my life at the moment 🙂

Holding On…

When I walked into the hospital ward this afternoon to visit my 85-year-old dad, he looked astonished. ‘How did you know where to find me?’, he asked, before frowning and adding a little forlornly – ‘I’m just baffled, I don’t know where I am…’

Dad has been in hospital for almost four weeks now, and sadly does not seem to be getting any better. If anything, he seems to be deteriorating visibly. His level of confusion gusts and lulls with the wind but his mobility is consistently a lot worse and to cap it all he’s now not eating and drinking properly. This is in spite the best endeavours of all the wonderful staff at the hospital who try so hard to coax him and cajole him to eat and drink and stand up and walk. But dad is having none of it, so today he was put on a saline drip to bring his fluid levels up.

Dad has vascular dementia, the result of several past strokes, and was admitted to hospital at the end of October after a bad fall at home resulting in a bash on the head, which has now healed beautifully. With the help of home carers coming in four times a day and additional weekly respite, my 79-year-old mum has been caring for dad at home over the last five years but it is clear to all of us (except dad) that this arrangement simply cannot continue any longer. Dad needs proper 24-hour nursing care now, and so we are working behind the scenes with dad’s Social Work team to find an appropriate Care Home for him.

And in the meantime dad has better days and worse days, sometimes knowing where he is and others not, sometimes chatty (though confused) and sometimes all too quiet and uncommunicative. When I visited dad this afternoon my mum had already been in earlier in the day, so I knew dad had been up sitting in his chair when she first arrived but was sound asleep safely tucked up in bed when she left. So I asked him – Have you had a wee sleep today? And he answered quite animatedly ‘No I haven’t had the time, I’ve been too busy trying to get my brain to work!’. Poor dad…

And so I continue to visit him for my allotted hour as often as I can, and just be with him. Sometimes he looks sad, or fed-up, or puzzled, or tired, but I just let him be in whatever frame of mind he is in, and sit with it. I sit with him as he sleeps, or talks about things that confuse him, or most recently as he just looks at me, holding his gaze for ages. I too keep eye contact and see him looking deep into my eyes for answers to unasked questions he can’t even begin to fathom, and I know I can’t help him find what he’s looking for.

But I can be there with him and for him and hold his hand and hopefully let my being there bring him some little comfort to his lost word, however momentary. Because I am still his daughter, his first-born, and he is still my lovely dad. Thankfully for now he still knows me and I will always know him. Within me I carry his genes and have inherited his high cheek bones and blue eyes, and amongst other traits his quiet nature, his love of the outdoors, his brick-wall stubbornness and dry sense of humour.

So I sit with him and I treasure every moment because I know I am so lucky still to have him here. He is still very much part of the fabric of my life, however unravelled and frayed and worn his memory threads may be these days. Right now I feel as protective of my dad as I do of my children, as if in his vulnerability I love him even more than I did before. Dementia brings such an urgency to love, a need to make the most of what you have while you have it because you never know when, in the blink of a vacant eye, it will suddenly be gone.

I do realise that one day dad will no longer know me, no longer know any of his family, but until that day comes I’m holding on with all my heart to letting him know quietly and constantly how much he means to us. It’s not much but in the circumstances it’s all I can do, and so I try to do it with as much patience and understanding and comfort and love as I can… ❤

A Lost Cause

Where have you been?‘ asked dad when I saw him yesterday…

My 85-year-old dad has been in hospital for the last two weeks, after a fall at home and a bang on the head. Dad has poor mobility due to four strokes over the space of several years, and has vascular dementia. I’ve gone up to the hospital to see him most days, but sadly he doesn’t always remember things. Like where he is or how long he’s been there, or what time it is, or what day, or what year, or what decade for that matter. Or in particular when anyone last visited him.

There are still restrictions and limitations on hospital visiting due to Covid, so there’s nothing straightforward about booking a fixed appointment slot in the ward to ensure that only one visitor per room is in attendance at any one time – and as dad is in a six-bedded room, that means sharing all available individual slots with a potential five other visitors on a first come, first served basis. Additionally, each patient is only allowed two designated visitors for the entirety of their stay – so for my dad, that’s my mum and me.

But of course dad doesn’t really comprehend the intricacies of any of this – not long-term Covid restrictions, not his being in hospital, not his dementia, not why things have to be the way they are for him right now. Dad doesn’t always remember when I visit – I mean, he knows at the time I’m there, but generally he doesn’t retain that information even to the next day. It’s the same when mum is there with him, he doesn’t always remember when she visits, either. Inevitably that hurts, makes it all so much harder to cope with.

I try to remain positive but to be perfectly honest I’m growing weary of constantly juggling work and buses and visiting slots, and I feel guilty that I’m finding it all so stressful. I mean, he’s my dad, and I do want to see him as regularly as I can to make sure he’s OK, but yet… Some days I go up and dad gives me a big smile when he sees me, and that makes it all worthwhile. He is usually happy in the moment, and for dad, the moment is often all he has. But on days like yesterday it feels like a lost cause…

For whatever reason, dad was not in a good place yesterday. Quiet, uncommunicative, not partaking in anything much when it comes to social interaction but easily distracted by watching the comings and goings of staff in the ward. ‘Where have you been?‘ is pretty much all I got from him yesterday, accusatory, as if I was failing him somehow. And perhaps I am. So I just sat patiently with him for my allotted hour, simply keeping him company, trying to engage him in conversation but mostly passing the time in silence, and then I got ready to leave.

Where are you going?‘ asked dad as I stood up, and I told him I had to go home now, because my visiting time was up but I’d be back again tomorrow… I gave him a hug as usual and as I turned back to wave at him I saw the confusion in his eyes, the puzzlement, the struggle for him to make sense of it all… So I sat on the bus going home with tears in my eyes, knowing there is no easy answer to any of this, there is no quick fix, no positive prognosis to look forward to… No real hope of salvation.

Dad has vascular dementia, and the harsh reality is he will have good days and bad days but there can be no getting better, only a slow downwards progression towards… what? Who knows… ❤ 😦

Erased

My mum worries that my 85-year-old dad is being completely erased by his vascular dementia, as if he is disappearing before her very eyes.

To be honest, nine times out of ten dad’s short-term memory is shot to pieces, but that only serves to make his long-term memories even more vibrant and real to him. It’s certainly true to say that dad has very little realistic sense of time or place these days, so he may not always be experiencing the same decade or external landscape as the rest of us but as long as you know his life history it’s usually easy enough to orientate ourselves to wherever he is, to make a connection and have a perfectly enjoyable conversation with him. He’s not really lost the plot in life, just the chronology, the timeline, the link to the here and now.

The biggest difficulty of course is in recognising dad’s dementia for what it is it and accepting it. Mum badly wants dad still to be the vibrant young man she fell in love with, the man she married, and sadly is still struggling to accept that he is not that same man and never will be again. She looks for him to be independent and active and all the practical things he was before he had his four strokes and gradually developed dementia. It’s as if she looks at dad and sees only the loss of those things she valued so much in him, and cannot reconcile her growing regret with the reality of his increasing infirmity.  

Understandably this was not what either of them had wanted for their old age. Whatever frailties befall people as you grow older, whatever successive health crises hit you, the expectation is that you will remain ‘you’ at source. Become a bit forgetful perhaps, a little slower and unsteady on your feet, find your eyesight and hearing depleting, or worse, develop a terminal illness that takes you too soon. But in essentials you still expect to feel like you until the end. And you expect the person you love to be the same, to retain the precious memories of the long life you built together, creating a shared past to sustain you both as you ease into retirement and beyond. A diagnosis of dementia cruelly robs you of that possibility forever.

After almost 60 years of marriage my dad still recognises my mum as his wife in the moment but no longer necessarily feels the safety and familiarity of the home they have lived in together for the last 48 years. Sometimes he recognises being comfortable in his own space with his own things around him, but at other times he talks of ‘home’ as being the faraway home of his childhood, and talks of his ‘family’ as being his parents and siblings, all alive to him once more. For mum, at these times it feels almost as if dad has erased her and the children she bore him from his memory, as if we have no importance or relevance in his present, and she feels the inevitable hurt of what she perceives as his unintentional rejection.

Dad is mum’s chosen life partner, but as he regresses further into his past she feels the fear that he is in danger of leaving her behind – or is it beyond – potentially losing all memory of the marital link between them. Meanwhile my brother and I are learning to live with an internally time-travelling dad who occasionally shows us fascinating glimpses of a multitude of pasts, some we recognise as being from our childhood, some from long before we were born. In our late fifties with grown-up children and grandchildren of our own, we are both just so grateful still to have both our parents alive when so many of our contemporaries do not.

So we try our best to help mum look beyond what is so clearly gone on the surface and take comfort in the depths of dad that still exist underneath it all. Yes, we have to acknowledge that dad is no longer independent or active or practically-minded as he once was – but he is still alive and is still incredibly loving and caring and considerate of others. Dad is neither aggressive nor violent in his manner, and although he doesn’t always get the familial connections right he does know who we are, which is wonderful for us and something special we need to make the most of while it lasts. Sadly he’s just a lovely old man who through no fault of his own is slowly retreating into the memories of his past.

Like it or not we are where we are, all of us together, and all we can do is love him and hold him and be grateful that we still have him in our lives… ❤

Fandango’s One Word Challenge: Erase

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! 🙂