Example Profile

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Hi my name is ……………………and I am staying in room……………..

with my parents (……………parents’ names). I will tell you a bit about myself and then you will understand why they are staying too.

 

I am 25 years old and have Down’s Syndrome and a dodgy heart and lungs, oh and this thing called a ‘Learning Disability’. Now that I have told you all about the labels attached to me I will tell you about the real me.

 

I live at home with my parents, my dog Alex and my cat Pluske. I have a very active life, despite having oxygen 24 hours a day. I go to Supported Employment, Radio 119, Hydrotherapy and Photography during the week with my support workers, and also do other things that I enjoy, cinema, bowling, and eating out. I spend the rest of my time with my parents, family and large circle of friends, and boy do we have lots of fun! If you get the chance ask my mum and dad what we do, though you may need to pull up a chair! I think my mum was born to be an ‘events organiser’!  Anyway back to me.

 

Despite having this dodgy heart and lungs and lots of long names about my conditions, I have spent very little time in hospital as an in-patient. When I did it was in a Paediatric ward where services are very different, so being here on an Adult ward feels very odd and a bit frightening for me.

 

To get around I use an electric wheelchair or my motorised scooter if I am going out.  I walk about as normal when at home although I do have a stair lift to help me get upstairs. I have full use of all my body and have never had any problems going to the toilet – it feels very strange for me to have to wear a pad or convene and have people seeing to my personal care. I was also able to speak before I had the operation on my head, so I am feeling frustrated that I cannot make everyone understand me at the moment. This is why it is really important that my Mum and Dad stay with me, as they know most of what I am thinking and what I am trying to say by my expressions etc.

 

I am also very aware that I cannot use my right side at the moment which is difficult for me to understand, and it has taken away a lot of my independence. My Mum and Dad’s job, as any other parents, has always been to keep me safe and well. They are the ones that manage my care when I am poorly, who take me to all my Consultant appointments, and manage my medication etc, so this is a big change for them too, and a very worrying time. It would be very helpful for all of us if you could do the following:

 

I know I have a side room, and this has been great for having some privacy, especially with my Mum and Dad staying over, but it can also feel pretty isolating.  Please could you introduce yourself when you start a shift and say what job you do, ie that you are my named nurse, or that you are the person who sorts my meals out etc. I like meeting new people, as do my parents, but it is important for us to know who you are and what you do. It also makes it easier for my Mum to know who to ask for is she has a query.

 

Please will you make sure you talk to me when you are saying something to or about me. If there are things I don’t understand my parents will help out with the language. For example, when the Physiotherapist was giving me instructions, there were some phrases I didn’t understand so Mum and the Physio agreed to work on it together. Now Mum will re phrase something if she knows that I haven’t understood something, and then I am able to work better with the person doing my exercises. The Physio also gets more used to putting things in a way that I understand. (I understand how to arm wrestle but he’s not very good so I am training him up!!) Unfortunately it also means that when I move wards or get a new Physio we have to start again – we know that this is something that can’t be helped but at least I know my Mum or Dad will be there when we start with someone new.

 

In the absence of speech at the moment, (though I am managing to say more words,) I can give clear thumbs up for ‘yes’ and down for ‘no’.  When I am not feeling too tired I have a great sense of humour, although my smile is covered by my oxygen mask most of the time.

 

About the seizures I keep having, please remember that although Epilepsy is quite common in people with a Learning Disability, I have never had Epilepsy, so the seizures have been very frightening for me and Mum and Dad to deal with.

 

Please please, keep my Mum and Dad up to date with what is happening with all aspects of my care. If there is a delay in something happening, just explain why. It is the not knowing that is frightening for everyone.

 

Thank you

 

Kristian, Maralyn and Alvin.