The Final chapter

Merry Christmas from our home to yours

We thought last year was a difficult year in terms of our health but  this year has shown us it can become more challenging faster than expected

Let’s start with some good news first. We had a lovely visit from family at Easter. 

We have had lots of visits from new friends and old throughout the year. 

Sam’s best friend Kaye and her husband Graham flew up from Sydney at the end of November.

Bless them they volunteered to come and put up our Christmas decorations as we are in no state to do it ourselves. We are so thankful for their visit. 

2025 has been a year of hospital visits for both of us. Peter continues to progress in terms of his diagnosis of dementia.  He saw his neurologist  recently and has had his diagnosis confirmed as semantic dementia. 

 This means that he will lose his speech and his ability to recognize faces as well . He is also having all the normal dementia symptoms like short-term memory loss and confusion etc`. 

He has also had trouble with pancreatitis and lots of issues with UTIs requiring Hospital admissions. 

We had trouble finding him short-term respite care when I was in hospital in October so he had to be looked after at Logan hospital until I was able to get home. 

Àged care is a complicated system and we just don’t have enough money in Peter’s package to have full time care when I’m not here. When I’m at home I have 24/7 care and that benefits Peter as my team look after him too. 

Given he is 84 he is doing well all things considered. 

Unfortunately I’m not doing quite as well.

I have been in and out of hospital all year as my disease has continued to progress.  I have also been diagnosed with myositis which is a disease that causes the muscles to waste very similar to MND. 

My cervical spine has collapsed from c2 to C5 resulting in paralysis of  the right-hand side of my body and complete loss of my hand. The left-hand side is also going the same way. 

I am typing this newsletter using voice to text as typing on the phone is near nigh impossible. My body is basically breaking down. 

During my last hospital visit my doctor’s informed me that I do not have much longer to live and they have organised palliative care at home for me. The estimate is 6 months but as we know timelines in relation to end of life have a degree of flexibility. 

I’m completely bed bound with carers  looking after me night  and day. I am unable to feed myself or do anything for myself aside from some work on the phone with a semi-functional left hand which allows me  to keep our home affairs running.

 To top it all off I also have cataracts on both eyes and my vision is terrible. Everything is a blur and it’s making it a little harder to cope with the other challenges. 

We are hoping that I might be able to get cataract surgery before the end of the year but there are challenges around that. To get some sight back would really help my sense of well-being. 

I did celebrate my 60th birthday this year and guess where I spent it. Yes I was in hospital. It turned out to be a really lovely day with visitors and flowers  and gifts. My room looked like a gift store by the end of the day.

I managed to enjoy my room all decorated with birthday cards etc for the seven weeks that I was kept in hospital. 

We will also be celebrating our 30th wedding anniversary on the 15th of December. I intend to hang around until then,even longer if possible. 

We do know though that our times are in God’s hands. 

Lots of love and a happy and blessed Christmas

Sam and Peter xx

The final countdown

This week the palliative care doctor called me. My condition has progressed to end of life stage . While we can’t give the exact day or date we do know we are probably talking weeks or a month or so rather then a longer period of time. I am now completely under the palliative care teams unit and as soon as my symptoms are no longer manageable at home I will be transferred to the palliative care unit at the hospital. Thankfully Peter will be able to come with me and have a bed in my room. We will be together and that’s all that matters.

Thank you so much

I want to end my blog on a positive note ,

I want to thank each and every one of you for following along with my journey.

I want to thank you for your encouragement and for your love .

Thank you for letting me into your lives and for sharing your stories with me ,

I feel so blessed and privileged to have had the opportunity to create an online form for those who are also traveling complex chronic illness journeys and to be able to write my book was a dream come true.

I have no regrets only a heart full of thankfulness and gratitude for all I have been able to do and achieve

Thank you all for everything , this is not goodbye but simply until we meet again.

with all my love.

Sam xx