We hope you all had a good Christmas.
Lots has happened since we last sent out an e-mail...
Luke's Dad and Ruth came over to the uk from South Africa to spend some time with Luke for a few weeks before Christmas. This was a very special time and Luke enjoyed having his family around him. During this time Paul came down to stay for a weekend to allow me some time out to recharge. I went to Canterbury for the weekend with my parents and enjoyed good food, wandering around the shops and even a trip to the cinema. All real treats for me and allowed me to spend some time with Mum and Dad and to recharge my batteries a bit.
Christmas was very different and a very low key affair this year but we managed to mark the occasion to the extent that we were able. Mum W went to stay with Sara and family for a few days whilst my parents came to stay with us. Luke had one of his better days on Christmas day and was able to enjoy a lovely Christmas dinner which Mum cooked for us. Our church also brought us communion to share together at home which was really special.
Sadly the last few months have been really hard as we watch Luke's condition steadily deteriorate further. The last couple of weeks in particular have seen quite a few changes particularly with Luke's communication. He now finds it very hard to communicate even his basic needs. He is now really only communicating with single words. We have to ask him Yes/No questions and even then his Yes can sometimes mean No. So life has become quite frustrating and hard work for him. On top of that he has bouts of prolonged confusion which can make for a very tiring day.
As a family we have been so thankful for our good health during this winter so far. However Mum W managed to catch some kind of viral infection and it became obvious that she needed to rest and recuperate. So she went to stay with Derek in Sussex and my parents came to stay for the rest of the week. Luke had a particularly bad day on Saturday, where he was very confused and agitated and ended up moving himself from the sofa onto the floor. We ended up having to call out the paramedics to help get him up safely off the floor. Thankfully- they had a very clever inflatable cushion which they slipped under him, inflated and raised him up to sofa. That day though really wiped Luke out and it has taken him some time to recover from the experience.
We are still receiving the invaluable help of the night time carers 4 times a week and lots of support and advice from the hospice and the district nurses. Luke has also benefited from a charity who provide complimentary therapies for patients that are referred to them. So Luke has been receiving weekly massages from a therapist who comes out to our house. He can have 6 massages in total. These he seems to really enjoy and she has also given us tips on how to improve his circulation down the weak side of his body.
Luke's Dad arrived back in the uk today and his help will be hugely appreciated! It now really requires 2 people to be around to look after Luke so having 3 people means that we will get more opportunity to have short breaks outside the house which is very much needed.
As we have said many times before- thank you for all of your prayers, messages and words of encouragement and support. They really do mean a lot to us and help to keep us going, particularly when things get tough.
With love and thanks
Katherine and Luke x