Desperate

Hi Carol

I am sorry to hear of your husband's stroke and current situation after clearly working so hard together to get him where he is today..

It is such a good thing that youve reached out and even though I haven't any answers other than to gain support from 1800 number for the Stroke Foundation. I hope that.a friendly and understanding ear from the people in the know may be able to point you in the right direction 

hello Carol I have no magic answers for you.  I assume you would have spoken to your GP as a starting point for help. Do you have any time for yourself to recharge your battery. JENNY

Hello Carol

My heart goes out to you in such a difficult situation and circumstances.  I don't have any answers either, except to suggest ringing the Stroke Foundation health professionals and speak with them directly 1800 787 653. I have found them extremely supportive and knowledgeable.  I sincerely hope the situation is resolved for you.

Hi Carol

I’m sorry to hear that your circumstances are so challenging despite the great achievements that you and your husband have made.   It is a testament to the strength and determination of you, your daughter and Neil, that he was been able to get to the point where he could be discharged home and improve his mobility so much against expectations. It is possible that Neil’s behaviour has changed due to damage in the brain that was caused by the stroke.

Here is a link to information about changes in behaviour after stroke.

Here is a link with information on how to create a positive behaviour support plan.

I agree with Jenny regarding the respite.  If you are able to have some time to look after yourself you will be better able to care for your husband when you are with him. 

Here is a link to the Carers Gateway fact sheet on Caring and Relationships. It has further details on the importance of taking the time out to relax and have some time to yourself.  You can also find out whether he would be eligible to receive any funding for services.  You can call Carers Gateway on 1800 422 737 for support and advice Monday to Friday. 8am to 6pm.

You could also call the Family Relationship Advice Line on 1800 050 321 or speak to a health professional at StrokeLine on 1800 787 653.

Best wishes,

Melita (StrokeLine)

Hello Carol Simpson

I have just read your story, and I am so sorry to read that you have been experiencing so much sadness, especially given how hard you have worked.

Firstly, I would like to try to answer your question re Anticipatory Direction.

Anticipatory Direction (Consent to Medical Treatment and Palliative Care Act 1995): A document which states what you the person would like to take place when you are at the final phase of your life or diagnosed with a terminal illness. It is not essential but in this Anticipatory Direction you can have documented your wishes for medication, the extent of medical intervention, accommodation - where you would like to be in your final phase of life - home with palliative care, in hospital or a hospice - it is all about what you would like to happen; it is your wish which has been documented when you were at a phase in your life when when you were mentally coherent and well. In my book I have also referred to it as a 'Living Will' or 'Future Directive'.

Having this in place when Clive was dying ensured that his wishes were adhered to. We both put our Anticipatory Direction in place after Clive's stroke when he was well.

In reference to your story, I really don't know how you can help you address the issues your husband is going through. I am thinking, that perhaps because his life, which was in his control before his stroke, is now out of his control because of his stroke may be a contributing factor. He may feel vulnerable, angry and inadequate, and as a result feel paranoid out of sheer panic. 

Given how you have stood by his side since day one of his stroke, been a part of his battle, he may have forgotten how hard you have been, and still are working on his behalf. I know Clive felt vulnerable and inadequate at times and self-doubted himself. When this happened, I just used to put my arms around him, tell him how much he meant to me and the important role he played in my life.

Is there a very close friend who may be able to console and reassure him, or perhaps do you feel that the role of a therapist/psychologist may be able to help? But having said this, your husband still has to be willing and open to your suggestion if this is the path you want to travel. No one can advise you except a professional. I guess you just have to follow your own 'gut' feeling.

Carole, in closing, I guess you have to keep yourself strong, reassure yourself that your husband still loves you, which I am sure he does, and what he is experiencing is an unwanted condition or legacy of his stroke.

Take care of self!

Kind regards

Carol R Fuller

Author: Echoes of a Closed Door - A life lived following a stroke.