Had a busy day today. Gill and Pete have been brilliant, they have done a lot of thinking for me, but we have managed to make all the arrangements.

The service will be held at

St Peter and St Pauls Church, High Street, Newport Pagnell

on Friday 4th January at 2 pm

everyone is welcome at the service

Black to be worn at Mike's request.

There will be a private burial for the Kerr family.

No flowers please, donations may be made to Willen Hopice through

H W Mason Funeral Directors

9 High Street

Newport Pagnell

Bucks.

This is the blog we have all been dreading. Mike lost his fight with that horrendous disease and died this afternoon. It was very peaceful and Jean and I were with him. There are so many people that I can't thank enough for the support that you have given us over the last eighteen months, but Willen have been absolutley outstanding and so sensitive at all times. In time I would like to do something to promote what a wonderful place it is, and that you don't just go there to die - they have ensured that Mike's symptoms were controlled and he was not in pain the whole way through this journey. They support the whole family and not just the patient, I can't thank them enough.

Please keep reading the blog for a while, I will post the funeral arrangements on here as soon as I have organised it - Everyone is welcome to attend, I want it to be a celebration of his life!

As expected today has been really difficult. It was strange being just the three of us for Christmas morning, but we got through it. We went to Willen and Gill and Jean and Eddie came.

When I got home this evening Cameron said how impressed he was at the massive effort that the staff had made today - I agree, they are amazing every day of the year but today they have managed to make a difficult day very bearable.

This evening has been quite difficult, Mike's hiccups have been very violent and they have had to increase his medication further to stop him becoming distressed. It has been quite Jolly at Willen today and I haven't been so badly affected by it. I have struggled with lots of memories of past Christmas Eve's since i've been home - Mike always loved sorting out the kids presents etc. I am doing my best to make tomorrow morning as enjoyable as possible for the kids, it will be very different to any other Christmas but we are going to try to make the most of it.

Emma's comment reminded me that one year MIke went to Mcdonalds on Christmas Eve, brought it home, put it in the fridge and microwaved it for our breakfast, followed mid-morning by a massive box of Thorntons - I had forgotten that he'd done that and am really glad I was reminded of it.

There is no change with Mike. Karen and Gill have been today. Gill was saying that she had been to Sainsburys this morning and found it really difficult to cope with people filling trolleys and pushing and shoving around like the shops were never going to open again. I must admit it is impossible to have any enthusiasm about Christmas, to us it will be like any "normal" day with a few presents here and there. The nurses at Willen are very jolly today with tinsel in their hair, I am even finding that difficult to cope with. I will be really glad when the "festive season" is over.

Mike had a very restless night and has now been sedated. It has been much easier sitting with him today knowing that he is not frustrated and unsettled. Jean and Eddie came this afternoon and Howard and Christine called in with a Starbucks special big hot chocolate (with a whole separate cup of whipped cream) - probably not good for the waistline but very good for the soul. Hannah and Cameron have both been today and Marie came for a couple of hours this evening to keep me company. Thanks to everyone who is being so supportive. x x

Nothing has changed, Mike slept all day. It is actually reassuring to see him so peaceful, when he is awake he struggles to get words out, words that get less recongnisable daily. He got frustrated this evening and threw his syringe driver out of the bed, luckily the tubing is quite long and it didn't rip it out of his leg. I sometimes wish I could get in his head and understand what he is thinking now.

Willen Lake

The garden at Willen

The View from Mike's room

The Church at Willen, taken from the garden

Nothing has changed today, Mike just continued to sleep, he doesn't even realise he has got hiccups any more. He drank a smoothie and had a few spoonfuls of jelly and ice cream at lunch time but didn't even open his eyes.

It was really frosty today (first time I haven't covered the car for a week, because I have been fed up with doing it and there being no frost) it was -7 when I got in the car this morning. The lake and church at Willen looked lovely so I went for a walk and took some photo's.

Merry Christmas

The Willen Christmas tree.

Willen Lake is to the left of the picture and Mike's room is behind the tree.

Mike has been less responsive today, he has struggled to stay awake for any period of time. His so called good hand has become very weak now, when he holds my hand there is very little grip. I have also noticed that attempting to speak takes even more effort now and he gives up much quicker and goes back to sleep.

I have taken some pictures of the Christmas tree at Willen today. We don't feel much like Christmas and have sent very few cards, so we are sending our Christmas wishes via the blog. x

Today has been another struggle. Mike is really down and has been very uncomfortable with a combination of hiccups a headache and feeling sick. He is very tired and is beginning to be reluctant to ask for help with the symptoms. It is beginning to get very sad watching him trying really hard to make himself understood.

Hannah and Cameron were really good yesterday, I phoned them to tell them that Mike was having a really down day, within twenty minutes they arrived at Willen and did all they could to try to cheer him up. I also need them to know that I appreciate that they are trying to keep the housework up together and have meals ready for when I get home at night. (the fact that your bedrooms need sorting before you get any Christmas presents hasn't changed though!) I love you both x x

Today has been a difficult day. Mike was sound asleep when I arrived this morning, he eventually woke up and had a beaker of milk and slice of toast. Karen came this morning and Mike made a big effort to speak, but was very tired. Early this afternoon he started complaining that his head was hurting and his hiccups were becoming quite violent again, nurses came and gave him a couple of injections and he slept for a couple of hours while I went to carers. When I came back he was asleep, I went home for an hour because Cameron cooked dinner. When I got back he had thrown all the covers off the bed and was very restless complaining that his legs hurt ( he has had a problem with his right leg having a burning sensation occasionally for months) but this was much worse than that and in both legs - he was given more pain relief and then went back to sleep. Today is the most distressed i've seen him for a while, but Willen are excellent at controlling his symptoms as they occur.

Nothing much has changed today, the hiccups continue. Gill and Pete came today and saw Mike at his best, he had slept all morning but when they arried he was awake eating lunch being quite vocal. It obviously wore him out because within minutes of them going he fell asleep and was still asleep when I left this evening.

This evening has been really difficult. Mike got really upset and his communication problems together with the fact that he was crying made it twice as hard to understand him. We just hugged each other for ages and I just gave him the opportunity to cry (obviously I was crying too by this stage). I asked him lots of questions and just got him to nod and shake his head, he isn't scared which is a relief although he has always told me that he's not. He is fed up with being ill, and fed up with not being able to do anything for himself. I am not suprised we cried tonight, we seem to just plod on accepting everything as it happens. Mike always asked me not to cry in front of him before but tonight was a bit different - I am totally confident now that I have told him how much I really love him.

More hiccups today, and nothing seems to be relieving it at all. He has had periods of being awake and desperately trying to make himself understood - I somehow feel so inadequate when I can't understand him. Gill came again today and Hannah and Cam have both been - Mike has always thought that Cameron has always known what he was saying but he doesn't have a clue. Odd words are very clear and you have to try to piece the rest together, swear words are the clearest of all but seem to come out in the wrong places. - It really is a rollercoaster.

Hiccups were a big problem today. Mike was getting very distressed by them and it took three injections before they were controlled, since they calmed down he has slept for hours and hours. I came home for an hour and half early this evening to sort the wages and paper bills, when I went back to Willen he was blissfully unaware that i'd been away and wasn't aware that I had been there with him this evening.

Jean and Eddie came today with lunch and Christine brought me one of Starbucks magical hot chocolates. Thanks x x

The rollercoaster ride continues. Today has been a better day, Mike has slept a lot of the day but had quite a long period of being awake at lunchtime, when he managed to entertain Gill and me. He was struggling to make himself understood and when he gave up with us trying to guess what he was trying to say he attempted singing a bit of opera instead. Sometimesit makes it really difficult to accept what is going on.

Gill has been a star today, she has kept me company for hours and went shopping and filled our fridge with food for us. Thanks, we really appreciate it. x x

When I came home tonight Hannah and Cameron had done all the housework and put up the Christmas tree and some decorations - I had mixed emotions, it was a lovely thing to do, but the idea of Christmas feels me with dread at the moment.

This morning was awful, Mike was very out of it. Jean and Eddie, Gill, Karen and Ian and Hannah and Cameron all came to Willen today. This afternoon and evening he has been struggling to try to communicate and getting very frustrated if you don't know what he means. I have always thought that this illness has meant we have had to take one day at a time, but now every couple of hours is different.

I never cease to be amazed by how wonderful the staff are at Willen . There is a constant flow of tea and coffee, hugs, tissues and today a nurse even brought me in some home made chocolates. Thank you to everyone that is helping us through this horendously difficult time.

Mike has been totally unaware today. Karen came this morning, Mike briefly opened his eyes as she was leaving but other than that was asleep.

Cameron came with me to Willen this evening, it was a really difficult visit, Cam kissed Mike and told him how much he loves him, he opened his eyes and seemed to acknowledge it. I don't know whether Cam or me got more upset.

Thanks for the comments, it is lovely to read how Mike has touched other peoples lives. The kids and I count ourselves lucky that he has been such a special part of our lives - he has been a devoted husband and wonderful father. I hate what is happening to him and the affect that it is having on us but am thankful for so many happy memories that we will always have.

Things have been really tough today. Mike has deteriorated a lot, he's not eating, being sick and the hiccups continue to be a nightmare. This evening they have set up three syringe drivers so he doesn't have to take tablets anymore, all we can hope is that he is comfortable.

Mike hasn't been awake today, The hiccups have returned and sleeping seems to be the only way he can deal with them.

Gill came today, Mike wasn't very awake when she was there, but we sat drinking coffee in the Lakeview area and talked a lot about really difficult things. We talked about Mike's wishes and remembered funny things that he has said and done. I've had a few "remember when" emails this week, I think people find it somehow inappropriate to leave messages on the blog at the moment and are emailing me instead, I find it comforting but it would be nice to share your thoughts and memories so please do feel free to leave comments.

Today has been a difficult day, Mike was very down, that lovely smile wasn't happening today. He has felt very sick this evening and has been given another injection for that.

Karen came at lunch time, Mike was alseep when she arrived but he did stay awake for a while once he realised she was there. He managed to eat lunch but totally refused supper today.

Mike's speech was a little better today - the rollercoaster ride continues, it almost gives you a little bit of false hope.

Hannah and Cameron came in to see Mike this morning, he was really pleased to see them and hugged them both for ages. He was quite proud of his catheter and insisted on showing it to them.
Jean and Eddie came this afternoon, he was asleep when they arrived but woke up and was on quite good form. We also spent some time today with Steve the Chaplain, I am so glad we have got to know him, he makes me feel very calm and I know he has given Mike a lot of reassurance over the past few months.

Christine called in this afternoon with a massive hot chocolate and cookie for me, together with a hug and an opportunity to talk. Thanks for that x x

Today has been the worst. When I arrived at Willen this morning Mike had a catheter and had obviously deteriorated further overnight. It is horrendous watching things go wrong so rapidly. I knew in my heart of hearts what is happening but I thought I needed confirmation by the dr's to enable me to start dealing with it. Dr's have confirmed my worst nightmare, we are nearing the end and at the rate he is deteriorating they suspect that it will be between one and two weeks.

I had the equally difficult task of telling everyone else who loves him, I spoke to Gill and Karen, thankfully Gill told Jean and Eddie and obvioulsy I have told our kids. The next however long is going to be awful, but I have total confidence that he is getting the best possible care at Willen, it is dignified and he will be pain free, I can't ask for much more than that at this stage.

Tommorow (today when you read it) is a special day for us, we have been together 22 years. We knew from day one that we wanted to spend our lives together, thankfully I have some wonderful memories of that time.

Today has been another difficult day, as Mike becomes more troubled by the paralysis in his right side I become more helpless. He used to be able to transfer into the wheelchair with just my help but it now takes two nurses. Therefore everything has become that much more difficult, I was still able to shower him today but needed help with getting him in and out and putting his pyjama trousers on. Mike has always been reluctant for anyone to help him but recently has accepted me doing it, I wonder what he is really thinking now.

We both had lots of tears when I left tonight. When Eddie visited on Sunday he innocently said "i'll see you Thursday, you might be home by then" Mike has clung to that possibility and tonight was very upset when I told him that he wouldn't be, because if nothing else, he would not be able to get up the stairs. This illness is so awful, he has lost the use of his right side, but his brain can't remember that, he thinks that he can do all the things he used to.

The weakness on Mike's right side deteriorated further yesterday, he was unable to sit up without leaning and eventually falling to that side. It has meant that he is no longer able to sit on the edge of the bed to eat his meals, he has to be propped up with cushions. He also had to give in to taking his drinks and soup in a beaker as he was really struggling with a cup. He still has no speech and I do my very best to understand what he wants and needs, but sometimes it is very difficult and he gets very frustrated.

I went to carers for a couple of hours while Mike was asleep yesterday. Christine arrived with the biggest hot chocolate with all the trimmings from Starbucks for me, it was lovely, thanks for that. x Flowers arrived at Willen from Emma and at home from Sadie - I really appreciate it x

I continue to struggle with the reality of the situation we are in. Everyone has their own ways of dealing with grief and their own ways of reasoning about it, so many people say that it is the dr's not quite got the medication right. I find these conversations incredibly difficult as I really think we are being faced with the harsh reality of this dreadful disease now and no one is to blame.

We had a difficult evening at home last night too, sometimes things get very heated as the three of us try to come to terms with what's happening. I was amazed by the very sensible conversation that Cameron had with Hannah, and for the first time I really saw him as a mature young man. Since the diagnosis Hannah has always struggled to be involved and her answer has been to shut herself off from it. Cameron sat and told her how difficult it is for all of us and he said "you're my sister and I love you, mum and me need you now and are going to need you in the future so please just try to think about how we are all feeling and lets attempt to help each other instead of making it more difficult" - he's obvioulsy his father's son!

Today has been a very emotional day. When I arrived at Willen this morning Mike had refused breakfast, had no speech and looked very vacant. Jean and Eddie came this afternoon and Mike managed to stay awake for a while. He smiled a few times, the personality that we all know and love manages to come through even when he is feeling really rough.

Gill and Pete came to the Lights of Love at Willen this evening, it didn't take a lot to make me cry - there was a Scottish Piper, we had a piper at our wedding and my head was filled with memories of all the hopes and dreams we had then. When we made those vows we never expected until death us do part to happen in our 40's, we had so many plans for growing old together. I also thought a lot about my mum, as I do every day, Christmas has never been the same without her and I can't bear to think about Christmas' without Mike. In the end I got so uncontrollably upset that I thought it was better for both Mike and me if I went home to sort myself out - he kept looking at me blankly like he didn't have a clue why I was upset, he then started stroking my hair in an effort to stop me crying and it just made me worse.

Mike wasn't good again yesterday, his speech is non existent and he's struggling to keep his eyes open for any period of time. He refused breakfast and lunch, but attemted to have a few spoonfuls of tomato soup last night.

The dr has decided to put his syringe driver back up, as every time it has been put back in the past there has been a significant improvement, but I have to be aware that he can't work miracles and it is not necessarily just the absorption of the steroids that are making him so ill. I often try to reason with myself that we have been so lucky, we have had so much longer than the initial prognosis but it doesn't make any of this any easier.

Mike wasn't good yesterday. He continued to have hiccups despite a higher dose of medication, his speech was almost non existant and he refused to eat breakfast and lunch, but did attempt dinner. Gill came armed with flowers and lunch, we had a coffee and a chat, it was good to have someone to talk to for a while. Thanks Gill x

I took both the kids into see him yesterday. I came home in the afternoon and told them that the last couple of days have been not good and that he was sleeping most of the time but would appreciate them coming. They only came for about half an hour but Mike did acknowledge they were there and he hugged them both, I get really upset when I see him with the kids, it really makes me think what an unfair world this is. I was double their age when I lost my mum and still feel cheated so how can they possibly feel?