When we think about the health issues of old age, the issues that will really reduce independence or limit life span, we probably think of broken hips, frailty or dementia but when we really get into the trenches, we meet a thing we rarely hear about: delirium.
Delirium is a sudden, temporary state of severe confusion and impaired cognition, often arising from underlying illness, surgery or medication changes in hospitalised or older adults.
My mum has been hospitalised several times over the last few years and has had delirium each time. According to the definition, delirium is temporary but what the definition doesn't tell us is that, oftentimes, people don't fully recover. Mum has been left with a cognitive loss after every episode. One time she had a long running difficulty with numbers, it seemed to eventually resolve but for many months she would use numbers in ways that were just so far wrong, it was impossible to make sense of. She would announce a heart rate of 300 or a blood pressure of 20, she thought her wedding was in the 90s (1968)
Mum also developed confusion about her phone service. She had once had a working understanding of internet service, mobile phones and landline but after delirium they were all dumped into a cognitive basket for communications and she would say things like she couldn't find an email because the phone at the house had been disconnected. No amount of explaining could help her understand but she also refused to let go of trying make it make sense so we had an ongoing saga of "trying to pay for the phone/ fix the phone/ fix the email" which just couldn't be solved.
A man who came to work looking for care for his dad expressed his frustration about deliriuim and about the silence around it, saying that his dad developed delirium after a surgery and was still impaired months down the track. He thought he might have taken a different approach to his father's medical decisions if he had understood the implications of surgery in old age. He commented that unresolved delirium is the same as dementia and he was right, technically speaking delirium and dementia are different but if they make a person confused and steal independence, the end result is the same.
These past two weeks, mum has been hospitalised again and has developed the worst yet case of delirium. When I visited on Thursday she asked when Dad was coming, tried to rip her oxygen off, wanted to know if she had to pay for a towel (apropos of nothing), undressed herself multiple times, kicked her sheets constantly and told fantastical stories about the great buffet that had been laid out (in a public hospital) and which she wasn't allowed to eat. She wanted her bed up and down about 6 times in a half hour and was angry when I asked how I could help her. After I left she spent the whole night trying to climb out of bed.
It was bad enough that every nurse I spoke to on Friday mentioned it, including some who had been working down the corridor.
After seeing all that, I went home on Thursday night sure that Mum was dying and trying to figure out how to get her back to her nursing home so she could live her final days in peace. When I visited on Friday she was sitting up in bed writing text messages to her grand daughters, still a bit confused but much more herself. I guess I can leave her in hospital to finish treatment after all.
I'm sure there will be permanent cognitive changes again and I wonder how we will navigate them. The good thing this time is she has an aged care facility to return to and we won't be trying to manage a confused, combative person on our own.
The situation must be so sad and frustrating for you. There is nothing to say beyond do your best and look after yourself first.
ReplyDeleteIt is sad, Andrew. Now that I realise mum's brain has changed I can better handle the frustration.
DeleteOld age is a bitch, isn't it?
As you mentioned to Andrew - old age is a bitch! We don’t know what’s in store for us and whether we’ll recognise the decline in us personally when it happens
ReplyDeleteHopefully your mum was tested for a UTI each time. Well known for causing confusion/ delirium in older people. Male and female
Knowing the effects of a general anaesthetic on the brain (at my age - shh - over 80) I voiced concerns to the anaesthetist who took it all onboard and said he’d make sure I was ok. Not sure how he could do that though.
Mum's delirium came from other infections: cellulitis and septic arthritis. Heart failure probably complicates it.
DeleteI'm glad your anaesthetist was on top of it!
I didn't know there was a difference between the two. They are both nasty for everybody involved to deal with.
ReplyDeleteThey are both sad and frustrating. Recovery from delirium is possible, not so with dementia
DeleteThat's tough, Kylie. I didn't have to experience it with my parents but I truly worry I might burden my children in my old age with dementia or as you describe, delirium. I feel so many changes at just 60
ReplyDeleteI hear you, Sam. I used to think I was safe from dementia because it was unknown in both my parent's families but now I have seen both parent's experience cognitive decline and every time I forget something I wonder if it's a sign
DeleteThat is hard, Kylie. I’m glad that you have a new understanding of your mum’s condition but watching a parent’s decline is still very hard and the day to day realities and frustrations are so difficult. I think we all fear dementia as we age whether or not it was apparent in our families of origin, partly because we now understand the various forms that dementia can take. I knew about the confusion and delusions possible with UTI’s but not the added burden of delirium and subsequent cognitive damage. As if growing old was not tough enough without that added dimension. Helen
ReplyDeleteUti is the best known cause of delirium but its also easily fixed.
DeleteI have read that delirium only happens when the brain is already declining but we may not be aware until that extra pressure makes it visible
Wow. That sounds difficult. At this point I guess it's hard to see how things will get better. It's tough watching someone living through the last phases of their life. Especially when we wonder how we are going to be when we get to their age. It's such a lottery too.
ReplyDeleteHi Michelle,
DeleteYou're exactly right. It's hard to watch and hard to imagine I'll get there.
I don't really expect things to get better, the delirium might go but there's no question mum is unlikely to make much physical recovery.
How often does delirium strike elderly people? If the answer is a relatively small proportion of people in their own homes, then we may not know what to look for. If hospital is a more common place for diagnosis, then the medical and nursing staff could be training the patient's children and grandchildren.
ReplyDeleteHels, I'm not sure how often it strikes people at home. It comes on with infection so it can happen at home or in aged care. It becomes almost guaranteed in a hospital setting with poor sleep, newcroutine and anaesthesia.
DeleteWhen it happens, there's very obviously a problem.
This sounds awful and I simply do not know what else to say.
ReplyDeleteIt wasnt fun but I feel like it would be less shocking if we were more aware of it. Hopefully my experience makes it a bit easier for someone else
DeleteMy mum was sharp as a tack even after having a stroke - I'm not sure if that was a good or bad thing for her as she was well aware of her own decline. My dad, however, did have some odd moments, but could also be cognitively fine. It's all horrible to witness, and I feel for you.
ReplyDeleteI'm dreading what old age has in store for me. I'm not sure you can be aware of the horror until you come face to face with it.
Sx
Oh, one thing - lack of hydration can also bring on delirium in older people.
DeleteSx
Ms Scarlet,
DeleteI dont think i knew about dehydration causing delirium.
Old age becomes more terrifying the more I know.
My grandmother had a massive stroke and was never the same. I think her mind was intact but she had difficulty speaking
Sometimes hospitals aren't good at making sure older people drink enough - and older people forget to drink.
DeleteMy mum couldn't speak after the stroke, but we knew she was still there. She couldn't write either, but she found ways of making us understand. She had to be peg fed, awful, but at least she was hydrated.
Sx
I didn't know about delirium, so thanks for mentioning it. Sounds like it's really difficult to cope with, especially if it's followed by some cognitive loss. Good to know she has improved enough to continue her treatment.
ReplyDeleteKylie, I'm getting a strange page when I click on your name in my comments section. It says your blog is A Write Panic, which obviously it isn't. Is that actually your comment?
DeleteVery tough to navigate all this Kylie, plus the worries about your mum. I did not know about delirium and am familiar with many old age issues (being one of the oldies myself) so this was a shocker, to say the least. And alarming. I hope she gets back to her care home soon. It's very hard on you.
ReplyDeleteXO
WWW
Hi WWW,
DeleteMum was transferred to her care home last night. It's just gone 6am Good Friday and she's phoned me to say her call bell isn't working. Which may be true or may be delirium. The nurse who answered knew who I was calling for straight away in a 150 bed facility so it's probably been a night for her