Teo Toriatte

A song from Queen seems to be appropriate.
I hope you hear the words.

We are living with "End Stage" which is very confronting.
And very fearful, for all concerned.

I know so many of my friends have already faced this journey.
I know so many of you have managed to survive this hideous trasition.

I do not not know how we will ultimately traverse this phase.

We take each day as it comes, and read our part from what transpires in any given hour.

We have support of Palliative Care. We have had ACAT assessments done, advising of high levels of Residential care.

We are yet to have the Community Nursing Care to visit.

I wish to care for Gom, in our home, untill the end of his time. We have been advised this should be possible.

There is no further medical intervention or investigation to be undertaken. He has ceased his Transfusions, and is visibly weaker, each day.

I try for strength each day. I have lovely support from our Son and our Daughter, and also our Granddaughter.

I have a recently bereaved Mrs Nice Neighbour to support me.
Our new GP is so supportive, it is comforting to know we have his backing care.

Queen, Teo Toriatte
http://youtu.be/YG0AUw8B7Yk

Looking for the Treats..

I am looking for the Treats in Life, free or otherwise.

They do not seem abundant at present.

We have learnt sad news of Gom's decline, which cannot be reversed, and which is progressing much faster than we had thought.
I had suspected as much, so requested an appointment with the Specialist, who confirmed my worst fears. There will be no trip to the City Hospital, for life improving procedure.

Gom had a choice of continuing on with transfusions, or ceasing altogether, along with 2 other choices. We were told that life expectancy would only be 4 to 6 weeks, if he ceases to be transfused.

I cant describe how badly I wanted to cry, and scream. I forced back the tears, and put on a brave face, for Gom's sake. He took the news quite calmly really. I suspect he knew in his heart, that his time is short.

We will just have to make our last days together as lovely as we can. Gom is aware of what is happening, and the fact that our days together are numbered now. We have had some really nice time together, recently, talking about how things will pan out. It is nice to think we can still have a laugh together, in spite of the grim outlook. We have both found humour to be a great salvation in times of extreme duress, and distress.
Times in our life together that have rocked our foundations.

Today was a Free Treat, in a way.
Gome slept late, and when he woke, he got up by himself, and came to tell us he wanted to take me/us, out to lunch, for a Mother's Day treat.

We were astounded, as Gom has been so tired and listless, it was amazing to see him so determined to go out. He managed to shower and dress himself, and even put his shoes on, without help.
Our son took us to a Club, and we had a lovely lunch, with Gom eating more than we have seen him eat in 4 days!

When we came home, he was happy, and warm, and he said he had really enjoyed our time out, and he seemed content.

Palliative Care is needed, we are told.  I have contacted an Aged Care service for help. I will not be holding my breath for when either will eventually 'get around to us'. This area has the reputation as being what is termed 'God's Waiting Room'.

All I know is, we are determined to keep Gom home, with comfort and his beloved Leo, as long as we possibly can.

Sadness washes over me in engulfing waves, that threaten to drown me. I must remain strong for Gom's sake. He told me he will go into Hospital, if that will make my life easier. It breaks my heart, to think we lost a year of such closeness, because the Dr's we had would not medicate Gom when I asked them, as he was so changed and irrational.  Our new GP is incredulous we have suffered so needlessly.

No looking back, and taking each day as it comes is the best we can do now.
Queen, Long Away.