Maintenance ECT – Or When Is Enough Enough?

maintenance ectIf you have been following my series on ECT (electroconvulsive therapy) you will see that I am (in general) a supporter of the process. It is the only thing that was able to break the hold that the illness had on my wife and not just once but on multiple occasions. The trick to maintenance ECT is getting the balance right, when is enough, enough?

My wife is diagnosed with schizoaffective disorder and when it flares up…well, all I can say is “run for the hills!” Things get ugly, real ugly, really quickly. Once the illness has it’s claws into my wife there is not enough medication on this planet to have any effect on the illness. The one thing, the only thing that does kick the crap out of it and send the illness packing is ECT.

The ECT is given in a “course” and usually it starts off with 6 treatments spread over Monday, Wednesday and Friday for 2 weeks in a row. When we have been able to stick to this plan, this frequency, the effects have been outstanding.

In our experience the initial course of ECT “belts” the illness and gets it back to a manageable level where medication, counselling and my wifes own coping strategies and awareness can take over.

But….you can’t beat a mental illness that easily! There are two things that can and often do happen.

The first one is so clever, so sneaky, so sly that in some ways I almost admire it. I have come to think of my wifes schizoaffective illness as a wild jungle animal. Like all animals it needs food to survive. To a mental illness the “food” is the stress, the anxiety, the amount of time the brain spends thinking about all the weird stuff that the brain is making up. The voices, the misinterpretations. While all this is going on the illness is being fed and getting stronger and stronger.

The other reason I liken it to an animal is that it will fight for it’s survival. I mean really fight. The human mind is incredibly powerful, creative and adaptive. I don’t think you can ever see a better example of this than when someone experiencing a severe mental illness is in treatment. The illness will bend, twist, morph anything that is being done or said to in some way justify it’s position. Do whatever it can to make the consumer disagree and disagree very strongly in any perceived attempts to control or “kill” the illness.

I realise some of these metaphors are strong and graphic and I don’t mean to upset anyone but I see overcoming a mental illness as a battle, as a war. It generally isn’t nice or pretty. There are often casualties – not so much the physical sense but in the emotional sense. The sooner the illness can be crushed, killed, destroyed the better for all involved. better for the patient, the family and friends, the system, the community, everyone.

So where am I going with this and what does it have to do with maintenance ECT? I’ll explain.

To have ECT involves being administered general anaesthetic and to have anesthetic you must be in generally pretty good shape. No coughs or colds, no running noses etc. I have lost count of how many times my wife has been suddenly struck down by a cough or cold 2 minutes before the procedure is due to start. The conversations will go something like this (simplified and shortened version)

Dr – “How are you today?”

Patient – “Oh, OK I guess. Don’t feel great, been coughing a bit and have a runny nose”

Dr – “Oh….that’s not good. I think we may postpone today’s treatment until you are feeling better”

BAM! The illness lives a few more days. The battle for survival has been won by the illness (again).

Wife comes home, no cough, no blowing of the nose in fact nothing. She is fully aware of what is going on but is as powerless to stop it as I am. It’s just a matter of working with it.maintenance ect

Over a few treatments the illness has been weakened and is on it’s knees. It’s under control  and the patient can no wbe discharged from hospital on the understanding that there is a requirement for some maintenance ECT. In Queensland this involves getting to the mental health ward at 7am where one of the staff take the usual observations – blood pressure, pulse, respiration, temperature etc.

After a few minutes it’s off to the day surgery area where the ECT will be performed. Depending on how many people are there we can sometimes spend a couple of hours waiting but generally less than 1 hour.

When it’s my wifes turn she walks into the room in her clothes with the nurse. I’ll then return to reading the 3 year old Womans Weekly that I have read on the previous 4 visits because it’s the only thing to do. Normally about 15 minute slatter my wife is wheeled out into the recovery area on a bed and in the process of waking up from the anaesthetic. After about another 15 minutes she is sitting up and pretty awake. Another 15 minute sand she is off the bed and sitting in the chair next to me with a coffee and a sandwich. Soon after we walk back to the mental health ward and have to hang around for 4 hours with nurses taking her observations every 30 minutes or so. My wife will normally have a couple of panadol during this time as she ends up with a headache.

So all in all not a long process but does take up half a day.

Phew…now that I’ve set the background we can talk about today’s topic – maintenance ECT, when is enough enough?

The actual process of ECT isn’t to bad. It’s quick and you get free coffee and sandwiches so its not all bad. But it does cause my wifes memory for that day to become pretty fuzzy. She will have trouble remembering things during the afternoon and evening. Things like she will start to make a coffee or cook dinner and half way through simply forget what she is doing and why. This is concerning for her (understandably) but I keep pretty close contact with er where possible to help her through these moments.

The problem is the dreaded illness loves these memory issues. Her illness plays on these and plants seeds of doubt in her mind of what she was doing and why. As most of you reading will understand, one of the saddest parts of being with someone who is recovery after a serious mental health episode is that the episode destroys all self confidence and self esteem. This is one of the issues that delays recover because the person has no self confidence and doubts themselves so much that they cant easily reply to themselves when something manifested by the illness enters their mind.

This process of gradually rebuilding the self confidence, the self esteem is so, so critical in the recovery process and is absolutely essential to long term recovery, stability and quality of life.

So what happens when once, twice, three times a week the person is having ECT which causes memory loss and/or fuzziness or slowness in recollection which allows the illness to create issues and concerns which in turn create anxiety, stress and worry. All of which chip away at whatever degree of confidence the person has managed to rebuild since the last dose of ECT.

So when is enough ECT enough? When do you know when you or the person you are caring for has had enough and needs to finish off their illness on their own, using the tips, tactics, techniques that have been taught or developed? How can you be 100% certain that the ECT has weakened the illness enough that the final blow can be delivered by the individual?

To be honest, I don’t think you can ever know 100%. I don’t think anyone can be 100% certain. It is an individual situation that needs to be looked at on an person to person case. Not a blanket “OK, you will have maintenance ECT 3 times per week for 4 weeks then twice per week for another 4 weeks then once per week for 8 weeks”.

It simply isn’t that easy. It isn’t that cut and dried. We aren’t dealing with a broken leg that will need 6 weeks in plaster to heal. We are dealing with the human mind. Every single one of us is different. Our minds are different and the system knows this.

Enough is enough when you decide it is. As a result of her experience, my wife knows when she has had enough. Not when the illness tells her it’s had enough but when she is well enough and has arrived at the point of her recovery where she the illness is weak enough that she can manage it herself. Does she get it right every single time – no! But is it the end of the world – of course not. As soon as things are getting a little bit worse, harder to handle she makes contact with her case manager and is back on the list in a day or 2 and back in for another couple of treatments.

What we have learnt, my wife, her case manager and myself is to talk about it. Be informed and proactive. Pay attention to how things are progressing and of course listen to the person who is actually having the ECT treatments.

I believe that ECT is a marvellous and powerful treatment for serious mental health issues. It has saved my wife on several occasions from an uncertain future we don’t even want to think about. However, it is a serious procedure that involves certain risks that shouldn’t be overlooked. So being observant and making informed, educated and calculated decisions as to “thats it! enough is enough!” when it comes to maintenance ECT is a decision to be taken seriously.

Here’s some more really interesting views on maintenance ECT.

Please as always don’t be shy! What are your thoughts on maintenance ECT or ECT in general? Please leave your comments below. You can comment with a alias and we will always respect your privacy 100%

Our other articles about our ECT experience

Long term effects of ECT on Memory & Personality

Side effects of ECT

What do you know about ECT

Should I have ECT?

Electroconvulsive Therapy & Memory Loss

Electroconvulsive therapy (ECT) – our experience may shock you!

Electroconvulsive Therapy Maintenance

Typical scheduling of continuation ECT involves gradually shifting from frequent (e.g., weekly) to monthly treatments over a period of 1-3 months, then maintaining the monthly administration schedule up to at least 6 months after remission (or longer if maintenance ECT is indicated)

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one reclusive girl: ECT maintenance # 2

http://onereclusivegirl.blogspot.com Thu, 02 Aug 2012 02:33:00 GMT

Tomorrow will be my second maintenance ECT treatment, I feel like I need it. My mood has been declining a little each day and I think that that little spark will pick me up. On top of low mood I’ve felt completely empty, this is a 

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reading up on maintenance ECT… | jumpstarting a life with a little

http://alittlespark.wordpress.com Mon, 01 Jun 2009 04:48:25 GMT

I don’t know if digging stuff up like these make me feel any better, but here are some abstracts on maintenance/prophylactic ECT in reputable journals. Maintenance electroconvulsive therapy for chronic mentally ill patients: a 

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Management of depression

Electroconvulsive therapy (ECT), formerly known as electroshock, is a … therapy is usually continued, and some patients receive maintenance ECT. …

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Ian Knabel

Aussie mental health advocate. Firm believer in power of self development. Eternal optimist - the glass is always half full. We stand for reducing the stigma around mental health issues and lobbying Governments at all levels to increase expenditure on public mental health services. My wife has a diagnosis of schizoaffective disorder and we share our experiences, our trials and triumphs to help you realsie that you are not alone. I am a husband, a father and hopefully an all round nice guy

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