Dealing with Delirium Misha Herwin

 



Meaning of Delirium: derangement, dementedness, temporary madness, raving, incoherent.

Locked in an existence with a husband who has been diagnosed with delirium, my world is confined to the walls of this house. Time makes no sense. It’s a month since my last post but it could have been yesterday or a decade ago. I know that Mike was rushed into hospital at some point in April and from then on the rest of my life faded into the background as my focus became entirely on him.  I ate, I slept, shopped, showed viewers around the house we are trying to sell then set off once again to visit a man who had lost the power of coherent speech, who raved aloud throughout the night, disturbing the rest of the ward and refused to eat even though, when the words began to return, he “was as hungry as a seagull.”

At the time it seemed that his derangement, dementedness, madness came out of nowhere. Looking back there were since January that things were not right, but at a certain age it is dementia you fear and I had no idea that there could be any other explanation for his increasingly odd behaviour.

He lost the ability to use the remote, could no longer manipulate a knife and fork and didn’t even attempt to do the Suduku he printed out every morning, when he could remember how to log into the computer.

Then Karen came for the weekend. She was talking about her mother’s will and when Mike tried to argue a point he could not find the words. Like a needle stuck in a groove he repeated the same phrases over and over again. Phrases that made sense to him but not to us.

An emergency appointment with the doctor arranged sorted by the nurse who was doing Mike’s blood test in preparation for the Memory Clinic and Mike who by this time unable to make himself understood was sent straight to A&E. I fear hours of waiting but whatever Dr Ganesh had written was a passport straight into the Acute Medical Unit and from then he was admitted into a ward.

His agitation at this point was at its height. There was no reasoning with him as he paced up and down searching for the button marked zero that would free him from as he put it “Durance Vile.”

A course of antibiotics for the infection that was supposed to have sparked all this off proved ineffective. No one listened to my suspicions that the diuretic he had been prescribed might have a role to play, but finally after a meeting with my son’s partner, who works with older people for the Court of Protection, vitamin B1 was administers intravenously and recovery began. (Oddly enough one of the causes for low B1 levels in older people is heavy use of diuretics, but the reluctance of the medical profession to listen is for another post.)

Improvement came slowly. First the words came back, then the obsession with zero diminished. The odd sentence structures disappeared and there were brief moments of rationality in among the craziness. Bit by bit we glimpsed the old Mike who was there under all the anger, fear and delusions.

Weeks in the Royal Stoke were followed by rehab at The Haywood, where the emphasis was on his mobility rather than his mind.  Pronounced “fit”, ie he could walk, go to the toilet, climb stairs, eat, drink etc. he was discharged. This came with a warning to me that having my husband at home was going to be very hard and had I considered the alternatives eg care.

I hadn’t. Mike was desperate to come home and I believed it was the one place he stood a chance of getting truly better.

We are three weeks in and living in our alternative reality where he has to eat three things on his plate to prove to me that he is clear. Quite what he is clear of, I’m sure, but however many times I reassure him that he is not infected, nor is anything else in the house, he returns over and over again to the same thread. He’s also talks about having his son in the next bed to him in the Royal Stoke, and of having to intervene when a nurse was threatened by another patient in the middle of the night, neither of which happened.

Gradually however the lucid times predominate. The flare ups, the unbridled yelling and groundless accusations less. So thank goodness is the swearing. He is also aware of when he is behaving badly and is quick to apologise.

Progress is being made. Even so, outings are fraught with the possibility of an outburst and I never know whether he will be loving or angry, demanding attention like a three year old or quite capable of sitting and watching the Olympics.

At least I no longer have to try to decipher somewhat cryptic conversations, digging out the meaning from apparently unconnected ramblings. Mike may tell the same story twice, or misremember what happened when he was ill, his short term memory may be faulty, but he can now socialise with visitors and do tasks like the washing up.

So where do we go from here? At what point will the Kafkaesque tenor of our lives return to something approaching normality?

Who knows? Up until this point the journey has been both fascinating and harrowing. All I can do is wait and hope.

   

Comments

Griselda Heppel said…
Misha I am so sorry for what you and your husband are going through. When I saw you'd used The Scream to illustrate your post, I thought, oh, this looks exciting, and assumed you were writing a psychological thriller or some such. I never imagined this would be real life. If you've posted about this before I am very sorry to have missed how dreadfully ill your poor husband has been and how terrifying this must have been for you. I've never heard of a lack of Vitamin B1 causing such terrible effects. How awful that it took the doctors so long to work this out (they should have listened to you!!).

Thank heaven recovery is happening but it's clear from what you write that it's painfully slow. What is the outlook? One can only hope that Mike gets back everything, or close to everything, eventually. Things are clearly better than they were.

Thinking of you both and hoping hard. Thank you for writing this.
Julia jones said…
Dear Misha, this is an astonishing and brilliant piece and deserves a wide readership.
People don't understand delirium. Doubtless it's different for everyone but you have expressed eloquently how it is for you.
Am about to share on FB and twitter. May I also have permission to share it on the John's Campaign site?
Thank you so much for finding the words
Peter Leyland said…
This picks up the thread from your last post Misha which I remember reading with anxiety for you and how Mike's condition might develop. Your story is harrowing to read as he descends into the hell of a mental and physical health crisis, but thank goodness it ends with the hope of some recovery however tenuous that may be. My best wishes to you both for the future.
misha said…
So sorry that it has taken me such a time to reply. Mike went through a terrible suicidal phase which eventually proved to be caused by the anti epilepsy drugs they gave him. Now on new medication he is a different person and far more like his old self. There are still various issues to deal with but I am feeling, if not exactly hopeful then certainly calmer than I did. Really appreciate your concern too. Other people's love and support is what keeps me going.
misha said…
Thank you for your concern. It means a lot. New medication has improved matters and fingers crossed that will continue.
Peter Leyland said…
Good to hear this positive message about Mike, Misha. Whatever the issue, I do think writing about it helps us get through.