Holiday, no thank you!

So I get a call from mum today. She said she was speaking to my sister and my sister suggested that for mum's birthday next year we go on a holiday. Meet in the middle (sister lives in the UK, we live in Australia). So, 2 years after mum has been diagnosed with early onset Alzheimer's, you expect that you can plan for the whole family to go on an overseas holiday for her birthday? Delusional me thinks.

From all I've read and research about early onset Alzheimer's, it often is fast moving, more fast moving than the older age Alzheimer's. So, who knows what position she'll be in, over a year from now. Very difficult to plan a large scale holiday like that for a family going through some very big, significant, stressful changes. I'd say, it won't be all beers and skittles. Surely dad will be verging on going crazy with the changes as they happen, as well as mum, and myself, and my sister, she may well get the shock of her life to see the massive changes in the past few years since we last saw her. Very stressful to say the least. And what of being way out of your comfort zone, and in a foreign country like asia? Way out of the comfort zone. Could be a disaster in the making.

I presume that when she speaks to mum on the phone, she must get the impression that mum doesn't have any symptoms, and she's just fine. And for 20 minutes on the phone, she may well put across a reasonably, ok appearance. She is somewhat fine, but that can all change in no time at all. And she is having symptoms. She doesn't live the life she lived 5 years ago that's for sure. Everything in her day to day life is different.

PS: After speaking to said "sister" have discovered that the conversation that took place was actually not quite the same as it was relayed to me.?!*

The family history

I have a family history of alzheimer's, my grandfather had it, and my mum's been diagnosed with it (both were diagnosed fairly young, pre-60).  I feel like I know that I have it, it's just the time bomb waiting to explode under the surface.  My memory has always been shocking (yeah, i know everyone says that), and I know if I went to a doctor and said (at 35 years old), I think I have alzheimer's, they would shut me down and just tell me it's paranoia / depression / anxiety because of the family history, and it's not necessarily going to happen to me, blah blah blah...

But you know when you know.  My mum knew, for years.  We discussed this, for YEARS AND YEARS!  She knew it for herself, and I knew it for myself, well before she was diagnosed, and she got told that she was just paranoid because of her dad whenever she made even a light hearted comment about it.  So, even when I was back in school, I knew that I was going to end up with it.  It's all I could see for the distant future, it's was like there was no other option.  No option of living to be a lovely old grandma who bakes, and babysits, and goes to the markets on her bus with her PVC shopping trolley.  I always could see it was going to be me, in a nursing home, with no memory.  Call it women's intuition, call me depressed and paranoid.  But it's been with me for decades now, and now that mum has been diagnosed, it's back in the fore of my mind, not just an occasional thought.  I am glad that mum had a few good years of being "Nanna" before things got bad.  She was fine when my first child was born, fine when my second child was born, and sometime before the first child reached school age, everything went to hell in a hand basket for her.

In any case, whether people believe me or not.  I'm pretty sure I'm going to get it, and in thinking about it, I think, unless there is some serious treatment available for it, that is actually going to do anything to make a big difference (which I believe there currently isn't any medicine that is effective), I wouldn't tell anyone, until I reach a point where it's affecting my safety, lifestyle, ability to get the basic functions done etc.  How can I not mentally prepare for it?  I know I have to just live and enjoy what I have now, and that is what I try to do.  But, mentally, I am preparing at the same time.

The treatment that my mum got when she was diagnosed was just horrendous.  She was a nurse, so within weeks of her diagnosis, she'd had a phone call saying they were taking her licence away.  Sure, I know she can't practice nursing, and she had no intention of doing so, but honestly, it was like when the diagnosis hit, all these automatic things just went into auto-mode, just to kill her confidence, shatter it completely.  No, they didn't offer her a job as something else within the hospital (like a domestic position or something), they just took her licence, and then never bothered to speak to her again pretty much (real compassionate).

Then the drivers licence department sent her a letter, "you need to be tested for your drivers licence" which was then restricted down to "you can only drive within 5km of your home".  And, let me tell you, she is in the very early stages of alzheimers, so there is no reason she shouldn't be able to drive, I know plenty of people who shouldn't be driving, and she, is not one of them.  It was simply that she was tested when she was at rock bottom, funnily enough, because she'd just be diagnosed with alzheimers, lost her job, her nursing licence and was being generally treated like a hopeless leper by most people.

So, in saying that, I think i'll just avoid ever getting the diagnosis until it gets super bad, because honestly, I don't want to be treated like an imbecile just because my memory is going.  Not in those early stages when there are still plenty of years of decent life left to live.

I'm pretty sure, that with my thoughts on euthanasia, that i'll make arrangements for myself if I ever get that kind of diagnosis because I don't want to live like that, I don't want to drag my children through years and years of alzheimer's, just rip the band aid off and be done with it.  Let them mourn, let them remember me as an independent person.  I don't want to be locked away unable to do things I like to do, simply because my memory is screwed.  I don't want to force my children to give up their lives to look after me, I don't want them to endure the guilt that I will have to endure.

So, there it is, it's out there, lets see if it ever becomes a reality.  Only time will tell, but somehow, one day, I feel like I will be saying "I told you so".