Re: Mum just been diagnosed Ninewells
Not posted for a while ,my Mum has been in hospital for some months now after her stroke and was discharged last Wednesday into "care in the community".We have been away on a holiday which was already booked and paid for ,as her health seemed stable and that proved to be the case with no nasty surprises whilst we were away.
Coming back we were thrown into getting a wheelchair friendly flat ready for Mum and Dad,and also the preparations for their already booked Diamond Wedding party,which they quite bravely wanted to go ahead with.
That took place on the 15th October and all family and friends seemed to have a good time despite the obvious sad disability of Mum who had to attend in her wheelchair,instead of their intended dancing round the hall.
Whilst "Congratulations" was playing to start the dancing I took my Grand daughter and whirled her around as representing the future of the family so to speak.Then everyone just joined in and a good time was had by all.
Another great grandchild is expected next week for my parents,and at least she is going to see that one as well.So happy yet sad times.
Mum's weight seems to be holding up and no sign that her cholangio is advancing appreciably,so maybe it is only growing slowly.Her metal stent seems to be working fine at the moment,and she eats a little and no vomiting.She is very disabled now and in some pain from stiffness with her immobility and also blood clots in her groin give her a lot of trouble and a very swollen leg.She is also nearly blind from the stroke.All this and her mind is still quite acute ,so she is aware that she is in a very poor state and dependent.
I don't think with all the help in the world that my Dad will manage to cope very long with her at home,but he will have to experience and find that out for himself,as he is the most stubborn old man, but sadly not as capable as he imagines himself to be. The upheaval of her discharge, the move and the party in the one week has been a lot to take in and has left him all at sea.But at least they have the Royal Message on the sideboard.
I am so happy that she has made it through to their special day,and each one now will be a bonus,although very hard too.I expect she will have to go into care as she deteriorates,possibly very soon,but they are together again for now.
Hoping all of you experiencing life with Cholangio are finding some small thing to treasure each day,
From a very tired and weary,