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".

Dear Mum, Snap out of it!

Dear Mum,

Snap out of it. Stop quitting, stop with the excuses, make some changes. It's up to you, nobody else is going to do it for you.

Honestly, today I could have slapped you. It's almost like you want to be disabled, so that you have an excuse to mope around and do nothing, so that you can expect everyone else to do everything for you.

You have an alzheimers diagnosis, I get that, you are depressed (even though you wouldn't want to admit it or face it), I get that. You have back pain, and foot pain, I get it. It sucks, it's really hard, it's torturous. But this is your life. Is that the only fight you have left? If you are giving up now, what's stopping you from topping yourself? If this is all that life has for you, you may as well end it now, because it's no life.

You went to get x-rays on your feet because you can't stand up long enough to do the dishes. They told you that you have stage 3 plantofaaciitis (sp?). So what do you say, a plethora of excuses as to why you can't wear orthotics because you don't want to wear sneakers every day? What? Your days of stillettos are long gone? You don't want cortisone injections because they are painful? Any less painful than the constant pain you are in at the moment? Honestly, you can barely walk at the moment, you shuffle around like a 90 year old and you don't want to try to fix what is a relatively simple, basic problem? If you don't want to fix your feet, get a damn wheel chair, and see how that goes for your back problems?

It makes me so angry when you want everyone to drown along with you, and your sinking ship. Sometimes I wish you would leave dad or he would leave you, just so you were forced to take some responsibility for your happiness instead of just accepting that life is over and sitting around waiting for a hearse to come pick you up.

If I were you, I'd be leaving, I'd be taking my half of the empire you have built as a couple, and blowing it on a big time fun filled couple of years. Find out who you really are and what really makes you happy while you have a chance, 1 year of freedom is better than a lifetime of compliance. Who knows what the future holds. Chances are, for you, the future holds a locked up nursing home, decades of demented torture, so make the most of now, and screw the future. Screw saving for a rainy day, open the blinds and have a look, you will soon see, it's torrential out there right now.

I hate watching you drown. But what can I do? You won't do a thing to help yourself, I can't save you, if you are just going to drown me.

Oh the frustration!

It's so hard to keep positive. The euthenasia topic is eating away at me. Mum keeps bringing it up and mentioning it. But I know deep down that she doesn't have the will or the conviction to follow through. I know she believes strongly in not prolonging life when the quality of life has gotten bad, and I agree, totally, 100%.  I also know, that taking action is a whole different ball game than agreeing with the philosophy that putting people out of their misery at a certain point is a kinder way to go. She can't make a stand on simple issues for herself, how in the hell is she ever going to implement a euthenasia plan?

It's almost as though she thinks she can make a couple of phone calls, sign a piece of paper and get a pill to take that will allow her to not wake up in the morning. Obviously it's not that simple.  She is so compliant, she has been taking cholestorol medication. Honestly, if you don't want to prolong your life, you have to pro-actively make decisions to not medicate for things that don't immediately decrease the quality of your life. Dying from a heart attack is going to be a lot easier way out than trying to top yourself, that's for sure. The cholesterol doesn't give her pain or trouble today, so why medicate it?

Obviously, she is not committed to taking her life (and death) into her own hands, so why must she persist in talking about it, when it's just empty. So here I am left stewing over it night after night, when, she is probably incapable of taking the action that she "says" she wants to take. She puts the pressure on me and makes me feel like I should be able to do something to help her.

The coming out?!*

So, Mum told me this week that my sister is engaged. My sister has been with her partner for over 10 years,  maybe close to 15 years. But it's always been somewhat closeted. I've known forever, and that's all well and good, doesn't bother me in the slightest, we love my sisters partner, she's awesome! But my sister chose to never really openly discuss it or publicise that they were a couple, in her Australian life that is. She lives in London and has done for close to 15 years I reckon, and presume that she's reasonably out and proud in London, but in Adelaide, different story, it's kind of like a badly kept secret that nobody talks about. Everyone kind of knows about, but not exactly.

So it's great news that they are engaged and that she has finally said it out loud to Mum, and apparently Dad is not talking about it. It's wierd, being gay in 2012 is just such a non issue. It's amazing that it still causes so much angst amongst people. To me, it just seems absurd that she just hasn't come out and had the uncomfortable conversation with my parents that she needed to have a decade ago. Now, it's all wierd. Mum is coping ok with it, and totally interested in travelling to the UK for the civil ceremony, but Dad is not.

All I have to say about that is: "Life is far too short to be worrying about shit like that". Seriously, gay / straight, blonde / brunette, black / white, boy / girl ... It's a non-issue these days isn't it? Surely?

To me, marriage means very little. Me and my partner have been engaged for nearly 3 years, been together for nearly 10 years (I think), but weddings and all that, just isn't my bag. I've always been of the opinion that I would elope, or have a very very very small wedding. And I've always been of the opinion that I'll never lower myself to inviting a bunch of people I don't want to invite out of pure obligation. One day we'll probably get married, but we've made our commitments. We've had 2 children together and for me there is no bigger commitment than that. I was always unsure of bringing children into this screwed up world, so it took someone worthy of my faith and trust to help me to do it. We've bought and sold houses, cars and white goods together, we've started a business together, so a ring and a white dress, ain't going to do anything to concrete our relationship. If it's going to succeed or fail, it'll do so with or without the white dress and bonbonnieres quite frankly. A wedding planner I'll never be, all seems like a fantastic waste of time and money to me, I'd rather just go on a holiday and skip the wedding.

I hope dad learns to accept the whole idea of having a gay daughter, because really, it's a waste of time worrying about things we can't change like that. It might lighten his emotional burden just that little bit.

Welcome to the memoirs of a dragon

The dragon being me, because I was born in the year of the dragon, and it was chinese new year yesterday, so the title is here.  I will use this to record my lifes events.  My memory is like a sieve, so this may serve to be useful later on. So here I am, 35 years old, in a happy defacto relationship with two daughters aged 3 and 5.

This blog is primary for my own benefit, not necessarily of any interest to anyone else. I want to use it to track the progress of my life, but also the life of my mum who was recently diagnosed with Alzheimers at 57 years old. She is also looking at possibly getting a Parkinsons diagnosis on top of it, which is pretty hard to cop for her I'd imagine. In the last few years her life has become a living hell as far as I can see. Her and Dad have worked hard all their lives to get to a position of financial comfort. They don't have any debt, own their house, own their cars, have a caravan and everything they needed to retire and enjoy life finally.

And then the bombshell. What started with anxiety / panic attacks and depression, lead to an Alzheimers diagnosis. Then deterioration of her back and the beginning of tremors may continue on to a Parkinsons diagnosis. As it is at the moment, her doctor doesn't even want to go near Parkinsons, she's still trying to accurately track her progress with the Alzheimers medications. So this year could be another big year.

Dad, well as a control freak from way back, is obviously struggling with how he's coping. He's just taking more control of her, and trying to control things that are well beyond his control, as will become increasingly obvious as the months and years pass. It will be interesting to say the least to see how he deals with the progression of mums demise. And interesting to say the least to watch how mum digresses, to see her true colours come out after years of repression.

I see people, and how they deal with terrible illnesses, and mum, so far has not proven to be a fighter. She seems to have given up on all hope that she will be able to make any of her own decisions for her life and death. Mum is a nurse, who has worked in aged care and dealt with dementia through her work as well as her own father living through it. She is a big believer of euthenasia and taking control of her life while she can still make these decisions. While Dad seems to have a pathological fear of death and won't even enter into those kinds of conversations. So with him as her next of kin, I'm doubtful that her wishes to die a peaceful and timely death will ever eventuate.

Sad but true.

I know that's a pretty full on first post. But that's where it's at!