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

Lucid is a Relative Term

My 85-year-old dad has vascular dementia, the result of four strokes over several years, and one of the things we’ve learned over the last few years is that when it comes to dad, lucid is a relative term.

We’re lucky in that thankfully he still recognises us, he knows who we are, by name if not always by relationship. He doesn’t always get the family connections quite right, but it’s close enough for dad to have a reasonably clear conversation with the people he knows best. He sounds a little bit confused, perhaps, and if you don’t know him well it seems like nothing more than memory playing a few minor tricks on a sweet old man. Everything seems perfectly fine until for whatever reason the conversation turns to the realities of time or place, and then the extent of his confusion becomes apparent – because more often than not dad has no idea where he is, geographically or chronologically.

My parents still live together in the house I grew up in – they’ve lived there for forty-seven years. When it comes to familiarity for someone with dementia, this is probably as good as it gets. Dad spends most of his day sitting in his chair – he has mobility issues due to the strokes – but can’t always find his way without guidance to the bathroom, or his bedroom. By late afternoon he frequently frets about where he’s going to sleep that night, and sometimes stops in his tracks with his walker frame, mid-journey, unsure of where to go next. He worries about which way he needs to go ‘to go home’ later on, does he turn left or right at the front door, which car will he be driving (although dad gave up his driving license due to medical reasons years ago)…

We tell dad he is already at home, and he looks startled, irritated, telling us he is in a strange place he’s never been in before. We tell him it’s OK, he’s somewhere safe, but he’s unconvinced, unsettled. ‘Do you know this place?’ he asks me – Yes, I say, this is the house I grew up in, we all lived here together as a family. ‘Where was I then, when you all lived here?’ asks dad, and I tell him he was here too. He looks at me blankly, so I try to reassure him that it’s all fine, as long as we know where he is and where to find him, everything is fine. He remains uncertain, insecure, and behind his piercing blue eyes seems lost, looking for constant reassurance, and this pattern of conversation repeats in variations on a theme, day in, day out.

Time has different meaning for dad these days, too. When we visited last week, both dad and mum were due a birthday – dad’s 85th the following day, and mum’s 79th a few days later. Dad made jokes about them getting old, and we all laughed. Then my husband mentioned he’d be turning 60 this summer and dad said ‘Oh, I suppose I must be coming up to 60 soon!’ so we gently reminded him that ship had long sailed, by a good 25 years… I told dad I was going to be 58 later this year, and he was shocked. I asked him what year I was born and without hesitation he said ‘1963’. We pointed out to him this was now 2021, so we did the sums together and dad conceded – for that moment at least – if that was the case he must be older than he thought.

The last time I took dad for a walk outside in his wheelchair, he was smiling and animated and I took a few lovely pics of him on my phone camera. When we got back home again, dad settled down in his chair with his usual cup of tea and a biscuit. I showed him the pics I’d just taken and he wanted to know who the old man was in the wheelchair? He was surprised to hear it was himself, so he wanted to know when they’d been taken? I told him – About half an hour ago… And got a blank puzzled look in response… Sad not to be able to build new memories with him, but thankfully we can still share old memories from the past. Well, most of the time, anyway.

Although one old long-term memory of dad’s that seems to have been erased completely has had a surprisingly positive outcome. In the past – at least in my lifetime – dad never ate yoghurt. Apparently one day when I was a tiny baby my dad was holding me up above his head when I was sick straight into his mouth, and ever since then even the smell of curdled milk in all forms had dad gagging and retching. Until his brain destroyed the memory, and now dad happily eats yoghurt without a care in the world. No memory, no trigger, no reaction. Amazing.

I suppose every cloud has a silver lining…

Fandango’s One Word Challenge: Lucid

No Treatment…Just Tears

If only there was some kind of treatment for vascular dementia, but sadly there is not.

My dad is 83 and has had four strokes over the last few years, each one leaving him a little more physically debilitated, a little more mentally confused every time. Most of the time for now, dad is still recognisably dad in his own mind, but nevertheless occasionally his brain fails him completely with no warning, catching us all by surprise.

Sometimes he forgets how to co-ordinate his two walking sticks and two arms and two legs just to be able to walk across the room – sometimes while he is halfway across the room in question. Sometimes he forgets where he is even in his own home, becomes lost or disorientated, or thinks he is somewhere else from his past. And sometimes he forgets who we are, or how we are all related.

Sometimes he knows I am Ruth, but is surprised to find out I am his daughter. He asks my mum in confusion – if he is my dad, who is my mum? Yet at other times dad’s memory seems sharp as ever – well, to be accurate, as rambling as ever. I grew up more often than not being called Edith, who was my dad’s eldest sister. So to be called Ruth so regularly by my dad these days is, in itself, odd.

It hurts so much to see him fail, my strong, unfailing dad. Dementia is such a cruel disease… We all rely on a lifetime of memories crafted cumulatively in our mind’s eye to create our sense of self, anchor us firmly in the present. So when our precious memory fails us so catastrophically, when the shutters come down so suddenly, who are we then?

Fandango’s One Word Challenge: Treatment

Dottled and Thrawn…

Dottled and Thrawn...

A million loving moments fill my head
Remembering my dad from childhood years,
But facing new realities instead
His failing fragile mind prompts blurring tears.

As vascular dementia takes its toll
Forgetful blank confusion plays cruel tricks,
Bewildered absence taunts his stubborn soul
And thrawn and dottled's not an easy mix!

Each tiny blockage works to undermine 
The crumbling bedrock of his memory,
His world's diminished, harder to define
Frustrating future beckons senselessly...

And once the day has come when no "Dad"s left
We'll simply go on loving, quite bereft...

PS For the non-Scots speakers of you out there, “Dottled” means in a state of dotage and “Thrawn” means stubborn… 🙂

Stream of Consciousness Saturday: Critical

Sometimes seriously stressful stuff builds up in peoples’ lives, simmering away ignored in the background and slowly getting more and more urgent to be dealt with until a critical mass is reached and suddenly BAM – one little tip too far and the whole thing just goes into a freefall meltdown… That’s kind of what happened to my parents lives recently.

My 82-year-old Dad has had several strokes and also has Vascular Dementia. My 76-year-old mum is his sole carer, and both had previously refused to discuss any realistic emergency backup plans. So when inevitably she took ill and was rushed into hospital by ambulance with suspected pneumonia at the end of last month my dad was unceremoniously whisked off to a local nursing home for emergency crisis care.

Dad absolutely hated it, not really understanding why he was there and apparently thinking he had been abandoned to his fate forever. Not that anything was necessarily wrong with the place, but it wasn’t his home or his family and he simply didn’t want to be there away from the people and places he knew. So I took some time off work at short notice, booked myself an overnight train to Scotland, and went up to stay in my parents’ home for the duration so both could come home to be looked after…

And three weeks on, now that Mum is much better here I am back home in London again. I’ve basically spent all that time with my brother and I effectively being parents to our ageing parents, sorting out all the major formal stuff with the Social Work team to be sure we have a suitable care package in place and all appropriate health and safety concerns relating to the house are dealt with, and serious discussions are begun about any long-term plans…

The thing is, both Mum and Dad want to stay put where they are in the large rambling rural house we grew up in, perfect for a fit young growing family but a potential death-trap for an infirm elderly couple, in denial and determined to maintain their independence at all costs. Because unfortunately what they really need in order to facilitate that continuing independence into the future is a smaller, infinitely more accessible home in a far less rural location.

Dad no longer drives at all, Mum is beginning to struggle with driving herself, and without their car they would effectively find themselves housebound, miles away from the help and support they need. But after 45 years in situ they are both too set in their ways, too stuck in the past, and however much we try to find short-term solutions for the problem of their location for the time being, one way or another it seems moving will eventually be inevitable.

So all my brother and I can do right now is remain ever-vigilant on high alert, potentially prepared for the next critical emergency to arise, frustrated at the futility of all our well-intentioned efforts ultimately to make life easier for them in the long-term, and simply continue to pick up the shattered pieces for them the next time their precarious coping strategy disintegrates into dust again…

Stream of Consciouness Saturday: Critical