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.