Our beloved children Tim, Jocelyn and Glenda have been such a strength to me in these difficult days. They are so tuned in to how I am feeling and I just love them very much. I know it is so far away for them, being in Melbourne and also not being able to talk to their Dad. I've had lovely comforting phone calls from them and their wisdom and understanding is amazing. It just isn't easy at the moment for any of us.

Tom and Amy are amazing to. They are loving and supporting Glenda and Tim and, as much as they can, Roger and myself. Not easy when big decisions need to be made.

Thank you my very treasured family. I truly need you at this difficult time.

Irene took Roger and I to Bethesda on Monday morning. We took the wheelchair, cough assist machine, Roger's new light writer (which speaks phrases for him), his tins of food (mains as we call them) and of course his suitcase.

Roger was very weak and not well when he woke up Monday morning. He did not get much sleep, coughing again being a problem for him. It was a huge effort for Michael to get him ready. The hospital wanted us there at 10am. All my poor darling wanted to do was sleep.

Admitting Roger (for just one week I think) was a long drawn out affair and I am relieved Irene was with us. We had to wait for the Dr for quite a while, but it was worth it as she was just so lovely. She mentioned about Roger staying in for 2 weeks, but I don't think I want him to stay that long. It is so hard and full on when he is at home and I don't always get a lot of sleep, but I miss him so much. If I can only get good sleep a few times a week I think I will be okay.

I have to tell you that I can't handle anything to do with the 'serious body piercing' as Roger calls it!! (The tube insertion in the stomach). It need to be cleaned and turned each day and I just can't do it! I have managed to do everything else, but this all turns my stomach green. The nurses have been cleaning it up and reducing the oozing. Sorry, but this is life. This is what we deal with each and every day!!

I've been feeling very sad this week. I have been enjoying being on my own without the home invasion of carers coming in, as lovely as they all are. I haven't been motivated to do too much when there is much to do. Our little home is looking quite nice as I have pushed all the 'hospital equipment' into the spare room out of sight (apart from the huge lift hoist).

I am having to make other hard decisions, which I don't feel right about doing. Darling Tim has been helping me and it's good just to talk things over with him.

If you visit I might now greet you at the door with "You are now entering Princess Gaynor Hospital"!!

On Monday a hospital bed arrived for Roger. Dear Russell dismantled the bed in our spare room and I gave the room a thorough spring clean before the bed arrived. Roger is now settled in the room. So very sad that we can no longer sleep together. I hadn't given this a lot of thought up till now and it is just sinking in that we probably won't sleep together again. Just another little bit of grief for us both to try and bear.

With the bed came an electric hoist for moving Roger in the future. What a monster. Irene and I had training on how to use it Wednesday lunchtime. What an ordeal and how very scary. If I have to use it all the time I am going to be ABSOLUTELY EXHAUSTED and I thought I was that already. It is very involved as it has to be moved into place, etc, etc. It can't even be maneuvered into the bedroom because it is so big. Two people can lift it in!

Manny came on Tuesday 10am to talk about communication for Roger. He is such a darling and ever so gentle with Roger. It was such a pleasure to have him in our home. Roger now has a light writer which can speak phrases for Roger. He also has a microphone that he speaks into so that his voice volume can be improved. Manny also left a portable doorbell which I can carry with me when I am outside or in the other bedroom. Roger can touch a button to contact me. This is particularly helpful at night now that we are in separate rooms.

I have been sleeping much better, which helps me to get through each day just a little better. Roger has had 2 good nights sleep in the bed but last night his coughing started again and he didn't get much sleep at all. It is Thursday night and he has started coughing again and is most miserable. There is nothing I can do to ease his distress and it breaks my heart to see him so upset. I think the coughing is to do with the Motor Neurone Disease and not hayfever. His breathing is much more shallow and he just can't get a good cough. We will be seeing a breathing specialist again in a couple of weeks.

Roger is going into Bethesda for a week this coming Monday 28 November. He is going in for 'symptom management'. Hopefully whilst he is there they will be able to get to the bottom of his coughing and relieve it in some way. I think he might have to go on a breathing machine at night. I would prefer they do it in hospital and he brings it home from there.

We are both struggling to manage our own grief and other people's as well. It is so hard to be on this journey and neither of us have the energy to give anything to anyone else. We both find this hard as we have always freely given of our time to others in the past. Our energy levels are very low and we don't cope with too much social activity these days. I find it difficult to speak on the phone, answer emails and have people in our home. How very different are our lives now than even 6 months ago.

Thanks for your thoughts and prayers. Please bear with us during this very difficult time.

Life continues to be a struggle for us both. Roger's cough is persistent and worrying and has made him very weak and set him back quite a bit. How it breaks my heart to see him so weak and unable to do anything at all for himself really. I am living each day by a thin edge and it is so easy to push me over the edge. Inside I cry most of the time. I am sleep deprived and exhausted.

Our beautiful son Tim visited us for 6 days recently and it was so good to spend time with him and to have his help with Roger. The time went ever so quickly but we felt very blessed to have him visit us.

We have tried to do some nice things with friends. Our friend Boyd Owen from The Ten Tenors was in Perth for a couple of nights and we went with him, Tim and Russell and Rene to The Naked Fig for brunch. We love this place!

Lovely friends Ruth and Andreas are visiting from Germany at the moment and we are enjoying spending time with them, even though we are very tired and can't cope with too much happening in one day. They are very understanding. We took them to Fremantle for fish and chips and then coffee afterwards, but I don't think the fresh air was good for Rog. We didn't have a good night's sleep.

We were so desperate on Thursday I requested emergency overnight respite and our dear carer Michael came and stayed overnight and looked after Roger. I went to bed at 9.30pm and woke up at 10.08am Friday. But I can tell you I wasn't bouncing with energy when I awoke.

I have officially left work as I just can't cope with all that needs to be done. Bit sad as I loved my job but my darling Roger is my top priority and I need all the energy I can get to look after him.

Roger is no longer walking and his speech is very hard to understand. He still loves to talk, but he is very quiet and you need to really concentrate when talking with him. There can be no background noise. Now he basically sits in his electric chair and reads or does his crossword. On Tuesday we are having a visit from Manny to talk to us about aids to help Rog communicate.

Motor Neurone Disease is unrelenting.

OUR FRIEND KEVIN

Our dear friend Kevin visited us for 2 nights on his way home to Basel. What an absolute treat it was for us both, and though Roger was quite unwell with hayfever, we were able to have good chats and we did manage to get down to one of our favourite restaurants "The Naked Fig" for Tapas late Saturday afternoon.

Thank you Kevin for being so loving and understanding of our situation and fitting in so beautifully as we struggle with all the grief that Motor Neurone Disease brings to our lives each day. You truly are a very special friend and we are so glad you were able to visit us and bring joy into our lives at this difficult time.

Kevin and Roger outside The Naked Fig looking out over the Indian Ocean and the
beautiful sunset after a very ordinary day weather wise!

HAYFEVER

My poor darling has totally been inflicted by hayfever and it is making his, and our, lives a misery. I must say it has given a whole new meaning to hayfever as Roger struggles with Motor Neurone Disease. He coughed uncontrollably for 3 days and I just didn't know who to turn to. No-one seemed to understand our situation and we were both so tired and beside ourselves with lack of sleep.

In Perth we have had such good rain that there is so much pollen around at the moment and many people are suffering as never before.

We are enjoying our new bathroom and have now got everything back in order. The house is looking good actually, especially as we have now completed the front small garden as well. We even have a picket fence that needs to be painted!

BETHESDA ROCKS ! !

Roger spent 17 days in Bethesda and he was treated with much care and dignity each day. The care and nursing was exemplary and this made Roger's stay enjoyable and gave him a feeling of being safe.

For me it meant I could get things done, that are otherwise difficult as I care for Roger, and I felt I didn't have to visit him everyday as he was being taken care of in a wonderful way.

We just want to say a big thank you to the nursing staff at Bethesda who are very special people caring for people experiencing deep sadness in their lives.

THANK YOU FROM ROGER AND GAYNOR