Friends, Family & Carers Forum

[Pen]

Hi Everyone,

I posted the other day. I'm not sure when I want to post again if I should be starting a new post like this or just replying to follow on from my previous post. Please let me know.

Anyway, the story of today for me is that I thought my husband was coming home from hospital today, but was wondering why I hadn't heard any details/confirmation. I had tried contacting him last night ( we speak each night on the phone) and was unable to get through also this morning. I knew he was due to have a final ECT treatment today. Anyway, I contacted the nurses on the ward who were unable to give me any information - said " I don't know him so am not sure of what is happening" and then said that he was due to be reviewed by the doctor today so would know more then. When I asked what the normal procedure for discharging a patient was, the nurse told me that usually the patients just contact their family and let them know. Seems a strange system to me!

Obviously I must have sounded a bit stressed as she asked a few more people who didn't seem to know, but then saw my husband being wheeled back from treatment & called out to him "you need to call your wife OK."

At this point, I asked who I could contact to make a complaint about their lack of transparency and communication and was told I could put a letter in the box on the ward. 

A short while later, the doctor called me (obviously prompted by the nurses after my call) and told me that he had planned another two or so treatments leading into next week. He said he had discussed this with my husband and thought he would pass it on to me. I was fairly upset on the phone and did tell him that I was very unhappy with the poor communication  with family members and that I count too!

Two nights ago when I was on the phone with my husband, he was saying can't wait to be home on Friday.

I don't know whether he had forgotten the conversations with the doctor - he does seem to have some memory loss after the ECT - who knows!?!

I'm not very confident in a system that relies on the patient who is having potentially mind altering treatment being left to convey all the details. 

Maybe I am completely overreacting, but I am upset and unhappy about once again being left out of the loop.  I had also rearranged my day and put off a pleasant activity to be available to pick him up ( which I was happy to do of course) and now find myself at home feeling miserable.

Seems like it's a hard balance to make it not "all about me" but the impact of everything at the moment is not just on my husband, but on me too.

Thanks for the opportunity/place to have this therapeutic rant!

Pen

[Alessandra1992]

Hi Pen,
This must suck hugely! ECT does affect your memory and I do not think it is fair that your husband is expected to look after his own discharge, especially when no doubt you are his next of kin and/or emergency contact.
I would suggest you call the Discharge Planner and Ward Matron/Supervisor. Also send in a written complaint about the discharge process, and hold them accountable that if your husband should wander off or go missing because he has lost some of his memory, you are holding them liable.
They have a duty of care so they need to be talkig discharge planning with you.
Watch out also for the old "bit your husband discharged himself". How can he safely discharge himself after ECT?
I have just been through a similar nonsense with close relative post back surgery. Hospital tried to discharge the patient with out doing a home assessment and tried to wriggle out of it by getting the person to. Discharge themselves. Well, if the painkiller are making his mind fuzzy and blurry that wasn't on either..
My close family member had an OT visit and aids in the bathroom installed coz I kicked up..sometimes we have to advocate despite the persons wishes..better that than ending up back in hospital in a hurry..