I have long been a lover of words. I love reading, I love writing and (sad but true) I love talking.
I’ve now read a couple of books – a novel and a biography – about people who’ve also been word-lovers who’ve developed dementia or alzheimers and have become lost for words. Both – along with other illnesses robbing people of their ability to express themselves – are tragic and I had a little taste of that for myself last week.
I’ve mentioned here previously that my father suffered from vascular dementia. It sounds arrogant, but a post I wrote about him, his memory and its impact on others, is one of my favourite posts ever.
The fact my father had a heart transplant could have been a contributing factor to his dementia – for various reasons… surgery, medications and so forth. The fact my father had a heart transplant is also why I’ve not made a big fuss about the minor surgery I had last week. After all… anything compared to transplanting a new organ in your body is kinda redundant surely?!
My surgery was fine. Other than some delays in recovery due to nausea or something and some post-surgery pain I escaped unscathed. I was only in hospital for two nights and on a drip for that time. My surgeon wasn’t able to visit on the second day after surgery so suggested I could go home (2+hrs away) if the nurses felt I was okay.
In reality I would have preferred to stay as I wasn’t 100%, but in the end they needed my bed, so my drip was removed as I packed my bag and called my brother who’d generously offered to drive me to my mother’s (who lives in a neighbouring town to me and is playing nurse-maid for a week or so).
I didn’t get released with any painkillers, which was a bit of a surprise and was still on a fluid diet of sorts on my release so there was a bit of pain but nothing excessive. I was still struggling a little with my fluid intake (why I would have liked to stay in hospital longer) but figured it wasn’t rocket science. #drinkwhenable
My brother stayed overnight after delivering me to my mother’s. I hadn’t slept well and ventured out to great my brother and mother the next morning.
It seemed to me that my mother kept inexplicably dropping my iPhone on the ground, but as she took it off of me I gather it was me actually doing the dropping. Twice – apparently – I attempted to put it on the kitchen counter but missed!
She kept saying my name and asking me questions. I knew what she was asking and what I needed to say but nothing would come out of my mouth. There were some sounds. But I couldn’t form words. Or sentences.
They ushered me back to bed but then fetched me suggesting I try to drink something. I did. And improved.
Jesus, I said later… I suspect I was dehydrated.
And yet a few hours later – after my brother had departed – it happened again. I was trying to calculate the amount of fluid I’d had. I could clearly see my notes: 200 + 200 = 400. D’oh, right?
And yet I couldn’t understand how I’d worked that out. “How does this work?” I asked my mother. “I mean, what’s 2 and 2?”
She couldn’t understand what I was asking. I knew I SHOULD know how to make that calculation but I just couldn’t fathom it.
And as I spoke words became confused…. I couldn’t find the words I needed. It’s something that happens to me sometimes and I fear my father’s dementia may be more congenital than illness-induced. But this was extreme.
I could think of words but they were wrong. They sounded the same as the words I was looking for, but they were wrong. Even I knew that. But the right words were just beyond my reach. I imagined my hand reaching into the murky waters in my mind, grasping pointlessly at words floating by, and just falling short.
My mother was again worried and put me to bed and made some calls.
More water and some sleep later I was again making sense. My kind local doctor called and spoke to me. I seemed cognisant again she agreed and we decided they’d just monitor me.
It’s been okay ever since, but that memory of my inability to find the words I needed – and my intense frustration as a result – stays with me. We all experience it to a small degree from time to time. It’s a confronting reminder of how difficult it must be for some who struggle with communication because of illness or disease; and those who are not permitted to communicate freely.
But as a lover of words I’m someone who, when writing, will (sometimes) painstakingly consider a variety of options before choosing the right word for a sentence. I consider the pacing and the balance. I weigh words. So to be lost for words has reminded me how precious they really are.
Do you ever struggle to think of words you need when writing or speaking?
Is it something you fear?
I’m belatedly linking up with Jess and IBOT.
* Original photo from Unsplash
July 19, 2016
Wow. That would have been frightening. Maybe left over confusion from the anaesthetic? A mate of mine had an episode of this when he was presenting a tutorial. It was ages ago and he thinks it was just stress because he’s been fine ever since. I panic when I can’t remember where I put something let alone that. Get better soon!
July 19, 2016
Yes, it was probably just the pain, dehydration or anaesthetic still playing havoc with me Michelle, but all I can remember is how frustrating it was!
July 19, 2016
Hugs gorgeous! The anaesthetic was likely to be a contributing factor. Dehydration probably exacerbated it. It must have been terrifying for you and your family. I’m so glad you’re ok now. Hope to see you soon! Rx
July 19, 2016
Thanks. Getting better each day. Ventured out for a bit of a walk yesterday ALONE. Can’t believe it’s one week today!
July 19, 2016
I reckon you were still trying to clear the anaesthetic from your body and it would have been a slower process if you were dehydrated. That explains your lack of words – old age explains mine. I’ll often struggle with finding a word that I know is stored deep in the dusty recesses of my brain. I don’t get too stressed about it now – just let it go and the word will come eventually. My processor is old but it still works in its own good time.
July 19, 2016
I first noticed having problems finding words when I came back from living in Africa Char. I’d predominantly been speaking (bad) Portuguese for the 16mths or so. And I noticed it when I got home… I’d struggle to find a word I wanted. I noticed it because it was so different to the way I was before. I suspect that improved with time.
And I’m pressure sure your processor works just fine!
July 19, 2016
Obviously I’m not a medical professional, but I would worry when it happens in a normal day, not while recovering from surgery xox. Stress, tiredness, dehydration are all “small” things that can impact on us in big ways.
Best wishes for a steady recovery.
July 19, 2016
Thanks Vanessa and yes, we did assume it was related to any of the things you mentioned… The fact I’d been okay (word-wise) the day before probably meant I worried a little less than I otherwise would have.
July 19, 2016
That would have been frustrating and frightening. It must have been so sad with your dad having dementia. Mine is in the very early stages but we know what we are in for as my father in law had Alzheimer’s. What a cruel and degrading disease it is. Glad to read you are up and about.
July 19, 2016
Oh sorry to hear about your dad, but it can be different in everyone. My dad was in his 60s when his started so not TOO young. As I mentioned in the ‘The Rain’ post… his manifested in an inability to transfer anything from his short term to medium and long term memory. One of my favourite books from a couple of years ago was a book called, Elizabeth is Missing, about a woman with dementia. The author put us in the lead character’s head and I liked that she was (MOSTLY) quite in the dark about what was happening.
July 20, 2016
Thanks Debbie, I will definitely read Elizabeth is Missing
July 20, 2016
It’s comedic too which is nice… (would link to my review but am sure you could find it…)
July 19, 2016
When I was pregnant, I had huge black holes in my brain. Only way to describe them. I suppose most call it pregnancy brain. Basically I couldn’t even recall the words to describe the word I couldn’t remember. I’ve had that happen lately on my latest meds with a lot of brain fog. For someone that use to have an almost photographic memory, its frustrating and alarming. I worry that it is a sign of things to come. I hope it isn’t.
I’ve only caught snippets of you being in hospital because I’ve been out for the count myself this past week. Hope all is ok now?
July 19, 2016
Am on the road to recovery now Raych, thanks. I’ve been offline a lot as well, but due to return home this coming weekend and hope to re-engage with life again!
July 19, 2016
Your favorite post being about your father is not arrogant at all. I can imagine this was quite a scary happening. I am surprised they allowed you to leave the hospital when you’d been on a drip! When I had my surgery last summer, I remember being disoriented when I woke up. I somewhat struggled with words, but then I gave up and apparently I was pretty brazen at IHOP. I also ordered the equivalent of 3 meals and my mother so graciously let me.
In high pressure situations, I struggle with finding the right things to say. I come from a large family, and we’re talkers. Even the boys. I think that’s where my trouble is, because I’ve never had to be very careful of things I say. But when it’s really important, I struggle with how to say things in the way I mean. I always have to write things down for them to make sense to me so I know what to say. When I had my first teaching interview, I had a panic attack and stuttered throughout the entire thing. My grandmother suffered from what we know now as progressed Alzheimer’s, and I do worry about that. I think my grandmother was suffering from the onset in the year preceding her death, and our family is convinced one of my mother’s siblings is suffering from dementia. Folks around town have even made comments about it.
It is a scary thought, and I’m glad you are doing fine now.
July 19, 2016
When they talked about releasing me I kept commenting that I was still on a drip (and it had some painkillers going in as well), but they removed it just before I left. In retrospect I’m pretty grumpy about that, but no one’s fault. They probably needed my bed and the head nurse just had to make it happen. I possibly should have been more assertive about my nervousness about leaving and remaining questions.
It’s scary to think about dementia and what might await us, but hopefully there’ll be improvements in medicine before then…
July 19, 2016
That sounds terrifying. I forget words often enough to annoy me but not like you describe. Glad it resolved itself so was surgery related. Big hugs
July 19, 2016
Thanks Deb. Hopefully I just revert to my occasionally forgetful self now! 😉
July 19, 2016
Oh Deb, my heart was in my mouth reading this. What a horrid experience & I too would have been worried. You certainly did not have the “optimum” hospital experience. Drugs, anaesthetic & dehydration would have all played a part for sure. Let’s hope all is coming together much much better now. Your post was fine!!
July 19, 2016
Ha! I sent some weird texts on Friday apparently. And… I was getting hammered by my RE Agent about the sale of my apartment as we got an offer that day…. 4 days before the 3mth contract was up with the Agent. I was trying to countersign things and scan and send them… it was a nightmare!
July 19, 2016
Glad you are on the mend!
July 19, 2016
Thanks Jill.
July 19, 2016
This reminded me of my TIA a few years back. The left side of my face and body went numb and I could not speak, however hard I tried. Even the act of trying to think was hard. The sense of helplessness and confusion is something I hope to never feel again. I hope you are now on the road to recovery Deb x
July 19, 2016
It must have been terrifying Kirsty! I tested myself later a few times for stroke symptoms just in case and I gather my brother was worried re blot clots etc… I vowed to appreciate my (usual) ability to speak and write freely going forward…. (or until I next feel sorry for myself for some stupid reason!)
July 19, 2016
Oh you poor thing! I know exactly how you feel, I’ve had a couple of seizures and right after, I know what I want to say but I can neither find the words or make them come out of my mouth. There was one time, I couldn’t even tell someone my name. It’s a really scary feeling. Wishing you a speedy journey along the road to recovery. Here’s to words and wellness!
July 19, 2016
Ha! Thanks Sammie – and your seizures sound terrible. I hope you’re past them now.
July 19, 2016
That sounds very scary. I’m so glad to hear you’re on the mend. Take care of yourself!
July 19, 2016
Thanks Denise.
July 19, 2016
How SCARY!! I haven’t had this experience but my mum does since she had a stroke. It’s not too bad for her really and she never makes a fuss, got to love those war babies. A friend of mine recently thought she was having a stroke, as did the paramedics… it turned out to be a shocking migraine. But the thought stays with me that we need to get help fast… and drink plenty. Hope your recovery goes well. xx
July 19, 2016
Yes Seana, I’m prone to worry about being seen as a hypochondriac so don’t like to make a fuss unless I think something’s really severe!
July 19, 2016
I’ve definitely had trouble sometimes with not finding ONE word I wanted to use, and not really finding a replacement for it, either. Just really knowing what I want to say, just not exactly how to say it, and that is frustrating, for sure.
It must have been scary to have this happen to you twice after surgery, and I’m always amazed (not in a good way, either) at how fast hospitals want to get rid of their patients once things are more or less getting back towards normal after a surgery…
I hope you’re feeling much better! *BIG HUGS*
July 20, 2016
Thanks so much Lexxie and yes… not being able to find that right word (anyway) is frustrating!
July 19, 2016
Sorry to hear you haven’t been well. Forgetting words is scary, especially for a wordsmith like yourself. There are the physical (dehydration, anaesthetic, pain) causes which are scary enough and then the worries about mental state. I’ve had the ‘words cant’ possibly mean anything’ reason to lose my words this last week or so, with so much loss to express that words are never enough. I find that so hard as someone who loves words to have no words, or not the right ones, that mean anything (or enough) in the face of such grief. Still when we reach for the right words, whether they come out right or not, that is mostly enough.
July 20, 2016
Beautifully said Kathy and very true!
July 19, 2016
Oh Deb that would be awful! I’m glad it was nothing serious.
I know that when I have a cold, words are harder to come by, and that really annoys me. I can’t imagine how hard it must be for others. I do hope that you’re feeling better now.
July 20, 2016
Yes… that damned brain fog sets in sometimes when we’re unwell doesn’t it? Or stressed?
July 19, 2016
I’m glad your op went well, but that must have been a really jarring experience during recovery. My grandmother had dementia and I remember her struggling to find the words. I remember her looking so frustrated, as if sifting through the alphabet in her mind but unable to put the letters into the word she needed. I hate being lost for words, and hope that I never experience it more seriously. Take care Deb, and at least I hope you get lots of reading in during your recovery.
July 20, 2016
Thanks Jodi. Amazingly I haven’t really been in the mood for much at all. I finally read for the first time in about a week the other day. I bought an entire TV series on DVD when I wasn’t in the mood to read, but… I haven’t been in the mood to watch that either! #gofigure
July 20, 2016
That sounds really scary Deb. Hope you don’t have any more episodes. Like you, as a writer, being lost for words (or being unable to read) are probably m worst nightmares. Sometimes when I’m tired or preoccupied I scramble my words when speaking and don’t even realise – saying things like “can you get the fridge out of the milk?” – until the family starts laughing!
July 21, 2016
I think I’m an auditory thinker Janet so sometimes if I’m distracted etc I’ll write a word that sounds like the word I’m trying to say. It’s not until I read my work back that I realise I’ve done it!
July 22, 2016
Gosh Deb, they’re quick to kick you out the door weren’t they. My elderly mum had surgery a few months ago on a stage four uterus prolapse and she had severe internal damage. She couldn’t walk for hours after surgery and they still sent her home a little over a day later, without pain relief. She was so incredibly tired and I found not only her speech was slurred but she also struggled with her speech which seemed to go hand in hand with a fever. It’s only a small glimpse of what you and so many families live with each day and I can’t even begin to imagine how tough that is and emotionally draining.
I mix up my numbers all the time. Since a teen, I confuse numbers. I can recognise a number and obviously know what number it is, but the correlation between my brain and what comes out of my mouth is entirely different. I know it’s a 6 but if I need to recite it back or writing down a phone number, I’ll write it down as a 9 or confuse it with the next number in a sequence. It’s almost a numerical dyslexia if there’s such a thing.
July 22, 2016
Oh that’s interesting Kelly – and bad (for you I mean), but I wonder if there is a numerical dyslexia. Interesting given you read so much and don’t have the same problem with the alphabet.
And you’re right re your mum and my experience, it gives you a teensy bit of insight into what others go through.
July 24, 2016
That would have been quite scary! I can only imagine what it would be like. It’s something I do fear about in terms of the future…I guess some day, with old age, it is bound to happen.
July 24, 2016
Oh yes definitely Sanch… to some degree, to all of us I’m sure.
July 25, 2016
So sorry for all your difficulties.
The only surgery I’ve had since getting my tonsils out was when I got my gallbladder out 2 years ago. They sent me home as soon as I woke up. I chose to stay home alone and just be checked on occasionally; then, just after my ride dropped me off, I had an adventure. I had read all about the proper way to roll out of bed, but nothing about getting into bed. I got stuck up against the wall, unable to lay down or sit back up and try again. I eventually managed to scoot down, but decided I probably should have let someone stay with me for at least the first night.
July 25, 2016
Oh yes definitely! I’ve lived alone for for about 25yrs now and before I moved closer to my mother I struggled after day surgery – often lying and saying I had someone at home. IN reality I had to taxi to and from hospital as I didn’t feel I could ask my working friends to take time off to pick me up or hang with me. They all had their own partners and families and other commitments!