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.
1 comment:
Dear Gaynor.
I have to fight back tears every time I read your blog.
I know you don't feel it, but you are such a strong, encouraging person.
I am now an aged carer and will start a nursing degree next year with the intention of remaining in aged care. (violining simply isn't paying the bills any more).
I get to go home at the end of my carers job. You never get to.
I'm glad you have a good carer who will sleep overnight to give you respite. It is so important for you to get some physical and mental rest.
I continue to pray for you all. You and Roger are very close to my heart as a family who helped me out when I was so new on my journey with Christ.
Love,
Sonia xxx
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