You may break, you may shatter the vase, if you will,
But the scent of roses will hang round it still…Thomas Moore
I haven’t written about visiting my 85-year-old dad for a while because sadly, due to Covid restrictions coming into force at the hospital for three weeks, I simply wasn’t allowed to visit for the duration.
We kept in touch with the ward by phone, so we knew he was doing fine… but still, it was a difficult time not to be able to see dad in person. He has vascular dementia and doesn’t remember about the Covid pandemic, or understand why ordinarily he is only allowed two designated visitors never mind none at all for weeks on end.
So as soon as hospital visiting recommenced at the end of last week I booked a slot to see dad again, and it was such a relief on that first visit to find that we simply picked up pretty much exactly where we had left off – he seemed to have no recollection of the fact that we hadn’t seen him for a few weeks, he was settled and chatty and he looked well.
I noticed that dad has had his hair cut since I saw him last, and with a puzzled look he brushed his hand over his head and said in surprise – oh yes, so I have! So I asked him who had cut his hair, but all he could offer (with a wry smile) was – I’m buggered if I know!
But as soon as I saw dad this morning I realised he was having a ‘lost’ day – where he finds himself neither easily in the here-and-now, nor happily living in the past, but stuck somewhere in between. He said hello and gave a brief smile as I hugged him and sat down, but he kept looking around, distracted and agitated, seemingly trying to pick up visual and aural clues to work out where he was.
I asked him if he was OK, and with sad eyes he said he was in a place full of strangers where he didn’t recognise anyone… A friendly nurse came in and spoke to him by name, and he was surprised that she knew him – he was so sure he didn’t know her. Poor dad, he was so aware that everyone else seemed to know with confidence where they were, so he concluded he must be the one who is confused.
While I was visiting we called mum at home with my mobile phone, and then afterwards my brother called us with the on-screen video function so both he and dad were able to see each other in real time, but dad really struggled to keep his attention on the screen with so many distractions in the background and soon handed the phone back to me, disappointed he was unable to follow the conversation.
I reassured him that it was still good to be able to see my brother via the phone, and dad agreed but wondered why he hadn’t spoken to his mum and dad for a while – he hoped they were still doing fine? I smiled and quietly admitted I didn’t know – what’s the point of reminding him his parents have been dead for a good 30 years…
Dad often lives in this nightmare psychological no-man’s-land these days, alone and lost in a mental landscape ravaged by dementia, increasingly burdened by his inability to make sense of his surroundings. He tries so hard to make his brain work the way he wants it to. He thinks and he thinks and he thinks; puts in so much effort to try to understand it all but somehow nothing makes sense any more.
It hurts us to see him hurting and struggling so much, but with the best will in the world there’s nothing any of us can do to ease that burden for him. There’s no easy-to-read how-to handbook to help with all of this, no instruction manual for coping with the disintegration of mental capacity caused by dementia. All we can do is be there for him and guide him and continue to love him for a long as we can…
Sometimes fresh air is the best medicine – I’ve got a thumping headache today so decided a walk along the canal close to home might help, and I took my camera with me for company. It was sunny enough with blue skies when I left the house, so I was in no rush.
But before long the sky darkened, and I got not too far along the canal basin when I felt the first spits of rain so turned around much sooner than I’d intended and it’s such a good job I did – the heavens opened and by the time I made it home again I was soaked. Even now the rain is still hitting hard off the window just to remind me it’s still there…
Sadly my headache is no better but I did enjoy my walk – well, at least the first half – and did get a few decent shots before the winter weather turned for the worst… 🙂
An atmospheric city skyline across the River Ness in Inverness, looking from Bridge Street over towards Huntly Street, taken tonight on my way home from the hospital after visiting dad.
There had been a beautiful orange sunset, and this moody, darkening pink and purple sky was all that remained by the time I reached the river 🙂
If I were to divide my life up into musical movements, I would say my life from birth to about 15 was lived vivace, lively and fast. From 15 to 30 life was lived allegro, fast, quick and bright, and from 30 to 45 things slowed down slightly as I preferred a more andente tempo, a far more comfortable walking pace. From 45 to 60 I’ve been living more adagio, slow with great expression, and from 60 onwards I’m looking forward to life lived largo, slow and broad 🙂
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… ❤
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…
Sorry it’s not a better image of the raindrops on the bus top deck front window and the sun shimmering on the wet road at the bus stop outside Inverness Airport the other day – I only had my phone with me, an it’s really not a great camera in dodgy light, but I kind of like the moody, broody atmosphere created in this shot 🙂
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! 🙂