complete fear of surgery after post concussion syndrome

My mum had experienced some PCS after a head injury. She is in her 80s. She has been improving and her memory is much better. Her head injury seems to have made her more cautious and scared than before. This is going to have very serious consequences for her.

I have sent this question to headway's help line. Does anyone have any advice via the forum? Would really appreciate it.

Mum has osteoarthritis in her hip. The other hip was replaced 8 years ago by a fantastic consultant and has been fine. She has every confidence in him. The GP referred her to him for the other hip. Mum walks with a stick and it is getting more uncomfortable. She has virtually no cartilage left in the hip now. He agreed to replace it in January and she has been on the list. She had tests and they performed an ECG. These were fine.

She has got a date for the op now. A letter came on May 5th. She has to respond soon as the op will be in June. She should have already confirmed it.

She is now saying she is not going to have it done as she is frightened. She is too tired and older now, but nurses and the team will care for her

when it is done. She will get help from family and a carer post op.

The consultant said it was ok to have it as it would improve her quality of life but she would take a bit longer to get over it as she is older.

He outlined the risks and benefits. If she does not have surgery, she will lose her independence and mobility.

I asked mum if we could go to the GP and ask her opinion or find out why she is tired before she refused surgery. Mum refused to visit the GP.

In desperation, I asked the GP to call her which she did. The GP says she should have it done in June and get it over with as they will just remove her from the waiting list if she asks for a later date. She is not necessarily going to feel more energetic if she leaves it till later. The GP says she can do no more if mum does not take her chance now.

Mum's brother and her best friend have tried to call her about it as well.

Mum now sometimes puts the phone down on me when I call her. She told me to get out of the house as well.

Last ditch attempt, would referral to a psychologist help in case we can convince her to go or have a session at home.

Mum matches some of the symptoms outlined in the booklets on emotional reactions post head injury and personality changes.

She has never been this way about surgery and took it in her stride, including bowel operations. Without the op she will end up in a wheel chair and have greater risks of falls where a break would be very hard to mend.

I'm out of my mind with worry and powerless to help. I've tried to explain to her how important the op is and what will happen if she does not have it but

she does not listen as she is so scared. She says she is stewed up, but she does know it needs to be done... She keeps saying just not right now as if she

wants to postpone it.

Thanks

4 Replies

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  • Jayne, just want to say I hope you get some answers. How frustrating that your mum won't talk to her GP, but if a home visit from a psychologist could be arranged it must surely be worth a try.

    The brain injury will almost certainly have altered her perceptions, along with an all too common stubborness in decision making.

    This was a drastic situation, but earlier this year my lovely neighbour, who was refusing treatment for a heart condition, was sectioned whilst in hospital as his refusal was deemed life-threatening.

    A hypoxic injury, from the heart attack, had compromised his judgement, so his consultant brought in a psychiatrist and he was intravenously medicated. He's much improved and very grateful today.

    Your mum's issue isn't life threatening so that wouldn't be an option...........but how tragic that everyone sees how her quality of life is being threatened yet are powerless to help her.

    I really hope she can be persuaded by someone 'in authority' to help herself. I can only imagine your fraught state of mind. Sincere best wishes for a reversal of the situation, with good results.

    Cat x

  • Thanks for the tips Cat. Mum may go ballistic with a psychologist coming to see her, but I will see if headway has tips. I already contacted a few of their group people in the North East. My Uncle wondered if mum might benefit from some sort of medication to calm her anxiety.

    I will also ask her best friend to see her in person rather than call as mum hopefully won't tell her to get out of the house if she voices an opinion.

    My Uncle actually told me that one of his other sisters could be very stubborn in arguments even without a head injury. I had never heard these stories before and was very shocked. I'm sure the brain injury has made mum even worse.

    Appreciate the advice xxx

  • Oh Jayne, what a worry for you. I know exactly how you feel as I have a very similar situation with my own mother.

    Could you phone the consultant's secretary and explain what is happening and see if the whole thing can be put on hold for a month? Then don't mention it to your mother at all for a couple of weeks. Maybe it is the pressure from everyone that is getting her in such a confused state as well as her head injury.

    Is it possible to make her realise what life would be like in a wheelchair. It would be drastic but maybe don't mention the operation but if she goes out insist on the wheelchair, push her round the house in it and so on so she gets a feel of what it would be like to lose her independence. Put things in cupboards where she wouldn't be able to reach them from a wheelchair - everything you can think of to make her realise what life would be like without putting any pressure on her. Hopefully she might make the proper decision.

  • Thanks for your advice exhausted wife. I'm wary of calling the consultant's secretary or the department to say what is going on for fear that they will just pull her off the waiting list. It even says in the letter that if the appointment is not convenient, she can let them know... I said to her she could do that. She just needs to say something soon one way or another. The GP said not to postpone as she will be pulled off the list. They will have to do all the health checks again.

    Mum feels guilty for me when I have to push her in the chair outside. She often refuses to go out at all in it unless really necessary so I do not have to push her.

    I like your tips on allowing her to experience life in a chair as it would be if she had to stay in one for good. She cannot get to certain parts of the shelves with her stick in any case. She has had some taste of it.

    She told me to get out of the house, often puts the phone down on me and at the moment, she is complaining that she feels too lonely at home (she has been left alone at her own request for a bit). This may make her wake up to the fact that life is better with family visiting you even if they are nags.

    I think I am going to offer her a last attempt of if I take an extra month or 6 weeks sabbatical to look after her post op if that will work.

    Thanks for replying xxx

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