Struggles and triumphs

[Deb]

Hi everyone.

Things have not been so good for me. I'm doing 'ok' generally the usual niggles, but struggling with my daughter. Not her as such, but the meetings and appointments that I have to attend. I think I cope pretty well with her day to day care and needs, with the help of my husband and older children.

I'm finding I can't focus in the appointments, or remember everything that has been said. I take notes sometimes but it's just not the same, it kind of ruins the flow of the meeting.

I'm finding myself getting angry, frustrated and snappy. I find it difficult to find the right words and in all honesty, I'm scared they'll think i'm not coping, when I am at home. So we are taking a 'therapeutic break' for a few weeks. This is a good thing, I'm almost at breaking point and I'll be good to no-one if things continue as they are.

On to a more positive note. Yesterday I received a letter from the hospital I was treated at, inviting me to a new service 'follow up appointment'

It has never been done here before (not sure about anywhere else) Basically I get to speak with the neuro specialist nurse and consultant and if they deem it necessary  they can refer me to a psychologist and someone else I can't remember who sorry.

They ask about the care received in hospital and will answer any questions I may have,  that'll be lots then, haha,

So, I'm actually looking forward to that, it's on the 10th of Feb, so will let you know how it goes.

Have a nice weekend.

Deb. x

[ClareM]

Hi Deb

 

That appontment for the 10th of Feb seems like a very worthwhile meeting. My follow up was with the Nurse Specialist who had reviewed my MRI at the MDT meeting with the consultant. She was brilliant and answered as many questions as I could remember to ask.

 

She also eventually referred me to a Neuro Psychologist who I met and am still seeing at the hospital where I work. My meetings with her have been invaluable and if you get the opportunity to see one please take it. I feel that in your position it would be really helpful for you.

 

With regard to your current situation I do feel for you. Dealing with your daugher on a day to day basis is much like returning to a job you have known well after your SAH. It is ingrained work and therefore is easy to slot back with.

 

The meetings with others is a different kettle of fish now. You have to use your brain to deal with the all the new information being fired at you from these people trying to help with your daughter. It's a little like me when I started my new job.

 

Basically the end result was the same as before (I am now a hospital  pharmacy techncian), a box of tablets withe correct details on it. But the way of getting there was so different to the way I was used to (I was in a community - local chemist - pharmacy)  that it was like starting a new occupation. New job later in life is one challenge, new job later in life after a SAH another matter completely.

 

That is what you are dealing with now and it is going to be challenging and it is not surprising you get frustrated. I can't really advise you on how to deal with all this except to say take your time and ensure they know you have been ill and need support.

 

The neuro-psychologiist will really be able to help with this so the sooner you see one the better. Also they will be interested in YOUR welfare, not that of your daughter which although is important, is not helped if you are not coping.

 

Good luck, keep us posted.

 

Clare xx