Monday, July 20, 2009

Another sunny day....

Just back from a meander along the river with mum in her trusty wheelchair, we sat and watched the world go by and had an ice-cream each. It is truly the simple things in life that are the best and I aim to do as many of the simple things with mum while we can. Tomorrow we are going to venture to Noosa Library and have a look at the audio books on offer, mum has been asking for a while to do this but hasn't been in the best shape to do it but for the moment she is good, so we will get while the getting is good.

I am happy spending time with my mum and sister, in particular, with my sister as an equal, although she will always be my baby sister, I have been quietly stunned at how brilliant she is at looking after mum at her worst and how capable and mature she is at managing everything around her. It has been an eye-opening experience as this has been the longest period of time that we have spent together, at other times when I have been up, she has been at work and doing her thing so we haven't spent a great deal of time together.

Mum is in marvellous hands with my sister and I have no doubt she will cope brilliantly during the week and I can come up on the weekends to relieve her for a couple of days so she can decompress and destress.

In other news, my parents and my sister have met W, the new fellow in my life and he's got the seal of approval from them. He survived the inquisition with panache and didn't run shrieking for the hills, so he has potential. With all else going on, W has been patiently awaiting his turn for my attention, and has placed no demands on my time, which is very considerate of him. It is still early days for me and I have no idea where it will end up but am just taking it day by day.

You just never know what is around the corner.........

Tuesday, July 14, 2009

Let me just adjust my chair....

I am pondering what to post, all sorts of things have been going on, and it's been a rough couple of days, in fact this past Sunday and Monday were two of the most stand out most horrible shittiest days of my life thus far. For various reasons I won't go in to the revolting details but most of it was down to the stress levels tipping key people over the edge and causing them to verbally abuse me and mine for no real reason. In addition, Mum's condition has caused her to be confused about her choices for care at this time, in spite of us having carefully discussed all facets of her care when the time came, she is now at the polar opposite of whatever choice she made previously while of sound mind and body.

Nothing works out as planned, you are told one thing and the reality is completely something else, you are made to feel stupid and dramatic for wondering how you can manage things better.

We are now at the point of having to work out care for Mum as the Sunshine Coast is abysmal in its lack of proper palliative care. In Nambour hospital "we just stick 'em where we can find a bed" to use the words of Mum's palliative care doctor. Which means noise, chaos, coming and going of all manner of people at the point where you want quiet and peace and time alone with loved ones whilst having professional care for medication & comfort.

The one thing I have learned out of all this, should I ever be cursed by this disease, I shall not allow this to be my fate - a judicious plan of self-euthanasia will be in place and I will avail myself of it and enact it when I deem necessary.

I feel empty and discouraged and terrified at the moment and have no idea how quickly things will progress, it is literally a day by day thing.

Wednesday, July 8, 2009

Pointy end of the pineapple....

Mum's condition is deteriorating to the point where serious issues have to be discussed and addressed - which is the purpose of this weekend's visit. My sister and brother will be there to have a round table discussion about various aspects of mum's continuing care and future management. My sister has been doing an absolute sterling job in our (her older siblings) absence and I am so proud of her and so worried for her at the same time. Only 25 and dealing with a fairly heavy emotional burden and still relatively sane. I have had the "talk" with mum and know what her wishes and desires are, however, my siblings don't as they both are younger than me and I guess Mum thought as the oldest it was my role to manage these things and truly, it is an honour to carry out things as Mum wishes, but I just have to relay this information more clearly to my siblings and other family members.

It is a true dichotomy for me at the moment, as everything else in my life is wonderful, I am really and truly happy with all aspects of my life (excepting mum's deteriorating health). I have a new fellow who is very keen on me although very early days, it is lovely to be desired and thought so well of. I work with wonderful people who cannot do enough to support me and offer me so much. My home life is great, Pete my flatmate is a cool dude who is great to share a house with. The furballs grant love unconditionally. I have wonderful friends who do nothing but give me love, support and happiness each in their different ways, who have gorgeous babies I get to spoil, interesting lives that I get to vicariously live through. I have my training to get back too when things are settled and study to look forward to next year. I have such a rich full life that I feel very blessed most days, but I have to face a future without my mum and that is causing some serious self indulgent moment ie Why me etc etc and bargaining with a higher power that if i do this you make mum all better.

Overall I have nothing to complain about, after all, there are billions so very much worse off and have through horrific things and gone on to thrive and be counted in the grand scheme of things.

Such is life I suppose....

Wednesday, July 1, 2009

111 k's and counting.........

Driving the new car is pure bliss, its zippy and responsive and fun to drive! The technology works easily ie CD books play, the MP3 plays the music and it all just works simply without a great deal of faffing about, which is good when one is driving and should have the majority of their attention focused on the road.
Today I collected my hearing aids, well was fitted for them. It was amazing watching them being specifically being tuned to my needs on the PC, the program is so intuitive and was easy to understand to a point. Now with all technology there is a bedding down period and I am to take note of what is working and what isn't and then go back to Barry for a tweak when I need to.

Just feeling a part of the world at large is very liberating, the sounds i am hearing are rich and full and robust - not thin and squeaky. No feedback squeals ever again unless something is seriously wrong. Just figuring out the support technology on offer, you should see the packaging and support gear that came with these two tiny aids, amazing.

Post again soon