Roger sitting at his room window at Bethesda (taken by Joel on his I-phone)

Roger was taken to the Pata Negra for Tapas with Paul and Joel. As you can see, he really enjoyed himself!!

I went to visit Roger yesterday afternoon and he was looking so much better than previous weeks. He has regained strength, is walking much more confidently and is much happier in himself.

When Paul and Joel arrived around 6pm they asked why I was visiting when I should be resting!! How cute! Anyway, I left and let the boys perform their magic on my darling! I am so touched by their love and compassion towards Roger. Paul is married to lovely Colette and Joel to gorgeous Louise. They are young marrieds who go to our Church.

Bethesda

Roger went into Bethesda Palliative Care yesterday for a week. I received a phone call from them as I was in the hospital foyer asking if we were coming! Obviously they have no idea what it takes to get my beloved ready each morning. He was looking his best, I felt very tired and exhausted and I wish I could have the bed and view he has for a week! But his circumstances are just horrible, so any pleasure he can get, I don't want to deny him (coffee and chocolate mint slice for breakfast!!!).

Roger is all settled into Room 5 in a 'Room with a View" (just for Jocelyn and Glenda's benefit). He has ladies fussing all over him and I think he is going to be very happy there and maybe won't want to come home!! I will take a few photo's when next I visit Roger and post them for you to see how happy he is. He has asked me to bring the binoculars for him to use.

I did not realize the tube feeding routine would be so rigorous with feeds occurring at 6, 10, 14, 18 and 22 throughout the day. But I have been told that this will settle down. It's like feeding a baby all over again. Cherylyn our Care Adviser from MND Society has reassured me the feeding will not be as regular and I will be able to feed through a syringe eventually.

I had a good nights sleep last night. It is good to have some time for myself and I'm not doing too much at all.

I continue to work at Star Settlements / ijrproperty just down the road and I am really enjoying the work and the lovely environment. I work 24 hours/week and hope to continue for as long as possible.

Yesterday was the most awful and traumatic day for us both. We had to be at the Royal Perth Hospital by 7.30am. Our darlings Irene and George were kind enough to drive us in. I couldn't believe that once in the prep room I had to undress Roger myself and put him in a hospital robe. I then had to get him on to the bed and put the sides up. Never in all my life have I wanted to be a nurse!! What on earth am I doing.

Lots of tears for us both yesterday. I felt awful leaving Roger in the hospital but knew there was no point in me sitting around. It's such a depressing place to be, with all sorts of weird and wonderful people (including us!!).

I was surprised to get Roger's sms at 10am to say he was back in the prep room and the PEG was in! As I had a long list of things I wanted to get done whilst Roger was being looked after, I didn't get back to the hospital until around...... actually, I have no idea, but I think it was around 4.45pm!! He had not been fed, he was very hungry and extremely thirsty. I was a bit cross about the lack of nursing, but of course, hospitals are always understaffed.

I'd been told by the Dietitian that Roger would need to stay in 2 nights so that he could recover and I could learn to feed him via the tube. I didn't dare tell Rog as I knew he would be more upset. I thought I would just wait to see what today would bring.

Anyway, the long and the short of it is that we are now home (thank goodness), but we are both very, very tired and a bit sad. It has been a difficult few days. Roger is in pain from the PEG insertion (directly into his stomach) and he is quite emotional, which is understandable.

There is a highlight. Our Football Team - The Geelong Cats, won against the Perth West Coast Eagles to go into the Grand Final next Saturday. Our dear, dear friend Paul - a Geelong fan - came into the hospital to watch the game with us, and brought lots of party food and drink. It was so lovely of him. His wife Colette bought Roger a giant chocolate football (yum, yum!!).

Roger goes into Respite at Bethesda on Monday 26 September for a week. I think this is good, especially as he gets used to the PEG. It also gives me some much needed rest to cope with the coming weeks and months. Here is the link if you want to find out more about the hospital. It is in the most beautiful location and I can't wait to see it.

Bethesda Hospital www.bethesda.asn.au/

Our bathroom renovations start on Monday 3 October, so it is all systems go here in the Ridley household!!

Thanks again for all your thoughts and prayers. WE CAN FEEL THEM.

I want to share some funny ditties with you just so you know it's not all doom and gloom around our place!!

I was helping Roger in the shower the other week (whilst in Melbourne) and I said to him, "Just hope out the shower darling"! His reply "Yeh sure, I'd like to do that, but that's a bit impossible at this stage"!!

Last night as Roger shaved around his beard (yes, he has a beard and looks gorgeous - and I'm not biased) he was trying to put his shave cream on top of the cupboard. He can no longer reach up with his right hand and there he was creeping it up alongside the cupboard to the top. I couldn't help it, I just roared with laughter and started singing the old Play School song "Open shut them". One of the lines is "creep them (your hands), creep them....." Oh well, maybe I'm the only one that will get pleasure out of this!!

We have settled into our routine again and this past week has been good for us both. We've had a quiet weekend and are trying to gain strength for the week ahead. We've had lots of laughs, some good chats together and just basked in each others company. It's been great.

We are enjoying listened to our old vinyl records which bring back lots of happy memories for us both. I'm so glad we didn't throw them all out, but kept about 40 of them.

Thanks to those who leave comments - I love them!!

It's Thursday night. We are both feeling much better and are settling back into life in Perth and our routine. There have been a few changes. Rog now has help each weekday morning to shower, dress and have breakfast - 2 hours each morning. I don't think he's very impressed by this really, but it is a huge help for me and I am feeling better for it.

We have both been getting some good nights sleep. Rog has been coming to bed earlier and this is helpful for me.

Another machine has entered the house, this time a 'cough assist' machine. Roger, with my help, goes on this machine morning and night. I think they are worried about what might still be on his lungs after his sickness in Melbourne.

I am now looking a tiles for the bathroom. I went to 5 places today!! Very tiring. Also looked at bathroom cabinets. In my spare time I had my hair cut!

I received a phone call from Bethesda Hospital today about respite for Roger. There isn't a bed available at the moment. I am sure it will work out just at the right time. More paperwork to do.

Roger is applying to get a Taxi subsidy, but this will mean another trip to the Doctor for more paperwork to be filled out.

Roger continues to work on his Dignity Therapy and the story of his life. I haven't got too involved in this but look forward to reading the finished manuscript which will be ready soon.

It's Monday night and we've just come home from the finals soccer game played by our Barnies Church team. They did a great job but did not win. It was fun cheering them on.

I had put together some red salmon patties before we left and have just cooked them and I can't believe Roger is on his third one! Needless to say they are a great hit and easy for him to eat! They certainly are pretty yummy.

We both continue to struggle along. Saturday night was the first night in several months that I have had an undisturbed nights sleep and it has helped a little. I would just like a few more like this to get some of my strength back.

Today we both went into work. Roger did extremely well with his scanning and I must say it does take his mind off himself and the office atmosphere is so lovely and very supportive. I enjoyed being back and everyone just let me settle back in without demanding too much of me!

It was difficult this morning as the phone started ringing around 8.45 and I was trying to get myself and Roger ready to face the day. Three phone calls in 1/2 hour is too much for me to cope with. We were expecting help for Roger, but they didn't arrive. Not sure what went wrong.

Tomorrow morning Trevor is coming to look at the bathroom again. It looks like the renovation will take place SOON. But I won't hold my breath. And goodness knows how we are going to cope without a bathroom for a week or two! I am so tired I don't know how I am going to cope with all that is going on.

I did get to the beach yesterday with Irene. We weren't very impressed with the rough seas, so decided to walk along the beach instead then sit on our towels and chat. The waves calmed down and we looked at each other and said "why not!!". So, I had my first swim after winter on 11 September. Not bad eh?

Tomorrow is the first anniversary of our arrival in Perth. So much has happened in 12 months and our lives have changed drastically.

Back in Perth

We arrived safely back in Perth Tuesday afternoon 6 September. We had a good flight home with Qantas and the staff went out of their way to help us. This really helped us both with the stress of flying back to Perth. As you can imagine, our emotions were rather high having to say goodbye to our beloved family and our beautiful little grandsons Nathan and Edward. Too much for us to bear really, but somehow we managed.

I was feeling most unwell and have now come down with a cold. I feel tired and cast down and I know I need some time on my own to recover my strength for the next part of this difficult Motor Neurone Disease journey that my beloved Roger is on.

Roger has lost 4 kg's in the past 3 weeks, is not eating nearly enough and I am beside myself to know how to handle the coming weeks.

Roger now needs help in getting into bed, he finds it difficult to turn in bed, he is struggling with reflux due to weak muscles and walking is now a big problem.

Our darling 'angels' Cherylyn and Karlene have helped to put in place some help for me. Someone will come each day next week to shower Roger and help with breakfast. This will give me some time for myself. Also they are going to try and get him into Respite for a few days or a week. As much as we both don't want this, if I am to be of any use in the coming hard weeks, I need this time to be able to regroup and to feel as normal as possible (a bit of an understatement with what we are going through).

I need to try and put into place help from friends that would be willing to take Roger out in the wheelchair for a couple of hours just to get him out in the fresh air and enjoying the beautiful sunshine we are having in Perth at the moment (temps between 20 and 25C during the day at the moment). Roger is quiet, so he doesn't need the constant chatting of people, but just the companionship.

We're doing it tough and I can't even bear to think about what is around the corner for us.

Again, I do have to thank you for your love and prayers for us both. We really are blessed to have an amazing family and so many wonderful, wonderful friends who love and care for us.

In Melbourne

Roger with Glenda, Nathan and Edward

We arrived in Melbourne on Tuesday night 16 August and our dear son Tim picked us up from the Airport and drove us to Glenda and Tom's to pick up the key to where we were staying. This gave us a chance to have a 'peek' at our precious little Edward and Nathan before we headed to our accommodation just down the road.

Roger was at the beginning of a cold when we left Melbourne and it progressively got worse. Eventually we went to the Dr and he put him on a huge dose of antibiotics to knock the cold on the head. We had many sleepless nights as once he hit the pillow he would begin to cough. Jocelyn, Irene and I gave him chest therapy (lying on his tummy and patting all over the back). Back to the Dr on Thursday to make sure Roger's chest had cleared. Then a reaction to one of the tablets he was taking and he woke up last Monday morning with the most angry rash all over his body so back to the Dr and more medication.

After all these tablets his bowels decided they wanted no more of it!! His last bowel movement was last Saturday. After phone calls back and forth to our Care Advisers in Perth I purchased some medication to help him along, but whatever we used still wouldn't move anything. He stopped eating because he couldn't use his bowels and felt so uncomfortable.

On Friday night 2 September Tom, Mariska and Andrew took him to Aussie Rules Football to see his beloved Cats (Geelong) play against the team on top of the ladder (not worth mentioning their name!!!). Geelong won by 96 points and Roger came home over the moon but very uncomfortable. I gave him some medication to drink but after 2 hours he still had not used his bowels and could not pass urine and he was in such a state, as was I. I felt very unwell and just beside myself and knew I couldn't drive him to the Emergency outpatients hospital. I rang for an Ambulance, which came about 3/4 hr later and they took him off to hospital. I cried myself to sleep, feeling so alone and lonely.

My mobile woke me up at 9.45am when Roger rang to say he was feeling a little more comfortable and that a Dr would visit again in about 1 hour. I picked him up around 12.30pm and brought him home, but not confident I should have been doing this as he had not eaten for 24 hours and was weak and still in pain. He had an explosion soon after arriving home and I just lost the plot.

Jocelyn came over and Cheryl to help out. Cheryl took me over to Glenda and Tom's so that I could get some rest (which I have done) and Cheryl is staying with Roger until I get back. It is now 8.40pm and I am hoping Roger and I will be able to get a good night's uneventful sleep.

Nathan and Edward are being Dedicated at Church tomorrow and we would both like to be there for this happy event. It is also Father's Day and the kids want to spend time with Roger.

Thanks everyone for your lovely messages, love and prayers for us both. All that has happened will really set Roger back. I will try and keep you up to date. We fly back to Perth on Tuesday 6 September.