The christmas caper

I’m just indulging myself here... I need vent, again.

I had a lovely christmas camping with some of my in-laws. Then on boxing day went to stay with my parents for a few days. I came home frazzled, stressed, frustrated, wound up, and undone all the good fun that I had over the previous few days.

The big thing was the "genetic testing results". I asked mum if she'd got her results back and she said yes, sounds like it was a few weeks ago, and she said something along the lines of "you don't need to worry, if anyones going to "catch it" (alzheimers), it'll be her brothers, not me and my sister". Which obviously makes no sense. I know that if it is proven to be genetic, that I have 50% chance as do her brothers). 

So I asked dad. He said "results were inconclusive", but couldn't give me anymore information than that, and told me not to worry, it's not worth worrying about". So I asked if I could read the results, which, of course, he couldn't find. It really upset me. The only reason she had the genetic testing, was for "our benefit". It can't help her, she has alzheimers, but it can shed some light for her children, and her brothers, and perhaps her grandchildren. I don't want to know if I have the specific genes, but if her results are "not genetic" it will make a huge difference to my chances, and my childrens chances. Therefore it would ease the stress on my mind in relation to me and my children.

So, they got the results, and didn't think to ring me, or post them to me so I could read. I was very clear about wanting to be involved. I took mum to the geneticist appointment, because I had questions. I understood the process, and the dr talked to me about possible outcomes, so I was the one in the loop, but they've completely ignored me when the results came back, which may well be the best possible results we could have got. Essentially what dad is trying to say is that it is not genetic. Which should be a load off, but my dad is known for twisting the story, and lying and making things up, so I can't ease my mind with the knowledge that it is not genetic, until I read the paperwork. What he says, has to be taken with a grain of salt. And especially on a subject matter which he knows nothing about. He has been proven to just make things up and get the chinese whispers tangled into all sorts of mess.

So, I will ring the hospital and try and get another copy of the results sent out, but I'm sure I'll be met with a brick wall, because that geneticist has now changed jobs. I'm so angry and upset. Because she had this testing for our benefit, and failed to let us, their children know the news (and if it's good news, that it is not genetic, it would certainly ease my mind as well as the rest of the family), but we're just left hanging. I'm really upset by it. This action shows their complete lack of care for anyone but themselves. Results don't affect her, so just stuff them in a drawer and lose them. Those results impact the rest of the family in a huge way, but don't bother to tell us the results.

Then mum tells me that she had a pap smear, and there are problems, so she has to have more regular pap smears. I said to her, "so if you were to get cervical cancer, would you treat it?" And she said "yes, you have to don't you?" This is someone who had been hounding me and her best friend, to organise euthanasia in the recent past since being diagnosed with alzheimers and then later, parkinsons. For someone who was so, totally pro-euthanasia, all her life, to then bother getting pap smears after these diagnoses. It doesn't make sense. Why would you try and treat cancer, to then live a long tormented life with alzheimers and parkinsons? Of course, she may not have cancer at all. But, for me, pap smears would be off the list. Getting cancer would probably be the silver lining, the easy out so she doesn't have to be dragged kicking and screaming through the next demented, tortured few decades.

It may sound harsh, but my mum has put some fairly unreasonable expectations on me in regard to euthenansia. My dad won't even speak about it, so she's dumped those responsibilities onto me. I'm the one expected to somehow ease her suffering when the time comes, even though she knows that I would have to battle my dad to the death for that to happen, aside from the legal implications, and the fact that she's signed over all the responsibilities to him, I'm still expected to try and "sort it out" when the time comes.

And then, my dear sister, who lives overseas, doesn't even bother to email, sms, facebook, or ring me for christmas. No, that's fine, don't worry about me, i'm fine over here dealing with our parents and all their issues, you relax over there and don't worry about me. Have a merry christmas. I can tell you, I'm not going to take the higher ground on that one. She's now had 2 years free from all this stress through the testing, the breakdowns, the lack of diagnosis, the lack of answers, the depression, diagnosis, then the next diagnosis. I'm far too busy with my mess of a life than to bother trying to reach out to her. She doesn't send her only sister, or her only neices a birthday card or a christmas card. No phone call, nothing. Selfish doesn't even begin to describe.

Now, I have to try and re-group, get past it and not just walk away from my family which is what I truly want to do right now. And the knowledge that this is only the beginning, that this could and probably will, carry on and continue to deteriorate for decades is torture for me.

Wa wa wa, poor me, i know, but I have to let off steam somewhere.

Sometimes, death is torture

I was having a conversation about death yesterday.  My step grandfather in law is back in hospital with a chest infection.  He's 89 now and has been going down hill for the past year or so.  He is pretty much alone in this world, only has a couple of people in his life who bother to care or visit.  And the process of him dying alone predominantly seems like torture.

His wife has alzheimers and is in a nursing home far away from him, she is 96 this year.  He doesn't want to go into a home, and wants to stay at his unit, but refuses all offers of help coming into his unit. S o he's on his own most of the time.  I wonder if him having a pace maker put in a few years ago was a big mistake.  His heart is almost ready to give up, he's always out of breath, no energy, no will to live.  It's so sad, and must be torture for him sitting at home by himself with few visitors, thinking about the inevitable.  He gets to a point of accepting that it's nearly his time for death.  But then when anything happens, he calls the ambulance, goes to hospital, perks back up, for then, it all to happen again a few months later.

He is worn out, tired, and no longer wants to really be here.  If he wasn't alone, he may feel differently, but the way he has lived his life has dictated why he is now alone.  I think he was always a fairly self centred person.  He is nice enough, but he is an academic, he was busy writing books, and changing the world.  He wasn't interested in the non-academic and just humoured us, kept up appearances come christmas, birthdays, weddings, funerals and christenings, but little more.  So he is alone.  He wasn't interested in making friends with neighbours much, he wanted to rub shoulders with academia.  So, as smart as he is/was, he's virtually all alone.  He is also half deaf, which in itself is isolating.

He has had such a tortured life when I come to think of it.  He was an academic, then became a catholic priest, struggled with that, eventually gave up on religion for the most part which must have been painful and difficult for him.  He never had kids, because the best part of his life was given to the priesthood.  Alone, alone, alone.

I hope, when my time comes, I'm not alone.  That would be the worst thing for me, to be left alone for my final years, and then have those years drag on and on.  Teasing me with death and recovery over and over again.

Another day, another appointment

We went to see the geneticist today. Mum had the blood tests to indicate whether the alzheimers is genetic or not. Dr told us that there is not much science behind parkinsons being genetic based, so he wasn't looking at that.

There's a 50% chance of them being able to indicate from the genetic testing that her alzheimers is genetic based.

Interesting appointment, but not a great deal of information that's very practical. Once we get the results, if it is considered to be genetic, me (and my siblings) will have 50% chance of having the alzheimers gene from mum. And all her siblings will also have the same 50% chance of inheriting it from my grandfather.

The only factor that i found useful in deciding to be tested or not, is that if you have the genetic testing, and are proven to have the defective gene, it will affect you in getting life insurance, income protection insurances etc. you are then obliged to pass on the information if you know, and therefore they will either not insure you or charge alot more to insure you, or insure you, with exceptions to alzheimers related stuff. So essentially, if you know that information, you are obliged to tell them. If you don't know the information, you can't tell them. I presume this will have effects in the future on things like health insurance, applying for certain jobs, pretty much anything where they ask you about medical history.

Essentially he said there is not much point in being tested, as there are no medications that would be useful to someone of my age to take to try and delay alzheimers. But in the future, if something were to become available, it may become worthwhile knowing. 

We will await the results, but it won't make much difference to me. I have no intentions of having the genetic testing, i'd much prefer to stick my head in the sand and pretend like it would never happen to me. Quite frankly I'd rather not be judged on things that may happen to me in the future if there are no real medications or treatments that will make much difference. If my life is going to be short (or torturously, painfully long) I'd rather enjoy it for now rather than trying to stave off the inevitable. 

Genetic testing

I tried to have a discussion with my partner last night about genetic testing. It appears we are opposites on that matter.

I am going with mum next week to have her genetic testing, and have plenty of questions to ask. If her genetic tests say that her early onset AZ is heredetory, I want to ask about what happens if I choose to get tested. If I have "the gene" am I obliged to then offer up that information when getting health insurance, life insurance, going for a job, etc. will that information be passed on to government departments for them to decide upon if i'm able to drive etc.

I am paranoid that if I get the notice that I have the faulty gene, that it will affect my choices in life. That I will have things taken away from me earlier than if I just battle on as long as I can without being tested, refusing to acknowledge the problem, even if i know it exists. The way my mum was treated when diagnosed disgusts me, and if that's whats in store for me, i'd prefer to battle it out on my own for as long as possible before allowing myself to be tested and diagnosed. Am I crazy? Are the medications really as futile as I believe they are?  Within such a short time of being diagnosed she lost her job, lost her licence, lost friends, and the way people treated her changed. It breaks my heart to see what she had to go through after being a nurse and aged care worker all her life. I think i'd rather people thought i was a bit wierd, a bit strange, stupid, ditzy, forgetful, crazy, than the stigma that alzheimers has.

My partner on the other hand thinks I should definitely be tested, and that if i have "the gene" do everything in my power to hold it off for as long as possible (diet, exercise, brain exercises etc).

But then I don't want to be a fanatic. I know someone who had and escaped cancer, but she is now obsessive compulsive, only eating certified organic this and that, she has to take her own flaxseed oil and specific organic salad every where she goes. she can eat this fruit, but not that one, she can eat this nut, but not that one. Some of the things she eats are truly disgusting. It totally limits her because she worships the ground her nutritionist walks and follows every single instruction to the letter. I don't want to live a life like that either. Death follows life, and i don't want to walk through life fearing death. I'm not perfect, i'm not a fanatic, i just want to enjoy what i have, and die quickly when it is time.

I see my primary job in life as getting my kids through school and to become good adults (they are young 4 and 6). Once that's done, then perhaps I can allow myself to indulge in my own illnesses and issues, but until then i don't want to live a life of paranoia over everything i eat, incase it's bad for my brain. everything i drink. i just have to get the kids to school, pay the bills and get by. i don't want to be held back by a ridiculous, fastidious lifestyle that is trying to avoid the inevitable.

But, on the other hand (how many hands do i have?) If i could have brain scans now, that track the progress, starting in my 30's and regularly to monitor the progress of the disease, this could be useful for science and research (therefore useful for my children should they inherit "the gene"). So, if it were going to potentially help my children (or future grand children), i'd want to do what I could.

Sorry, just another vent.... trying to process all this crazy stuff in my head!

Nothing like being kicked when you're down

So we had the neuro-psych appointment last week to get the next kick in the guts. Apparenlty mum is now diagnosed as having Parkinson's Disease as well as Alzheimer's. They've started her on a parkinson's drug to stop / slow the tremors. I really don't have much to say about this. It's pretty horrible as far as diagnoses and prognoses go. I know she has some difficult decisions to make, but I fear she is no longer in an emotional state to even make those decision. Her depression over this, although very understandable, has made her un-willing to even bother to make the tough decisions, and stand up for herself if her wishes are different of those of dad. So there we are. That waiting game has begun. We just wait until one or the other completely destroys her life, and try and encourage her to live as much as she can now and screw the future because the future looks for her to be well and truly sucky!

The downhill spiral continues

We went away with my parents to the country to get away for a long weekend. It was great to get away and go bush, and we really enjoyed the experience, so did the kids. But mum, not so much. It was too cold for her, and after a few really bad weeks, she probably shouldn't have gone away, but what do you do? sit in the comfort of your recliner until the alzheimers takes over? or get out and do something with the time you have left? create some photographic evidence that you actually did do some interesting activities with your grand children?

Last time we went to her geriatric specialist. They told her to stop taking Aricept to see if it was going to affect her tremors, as she has an appointment coming up with a neuro psych who specializes in parkinsons. So she went off the Aricept for 3 weeks, and it was a complete disaster. Apparently the tremors reduced a bit to start with (indicating it may be medically induced rather than parkinsons), but then she had 2 big falls, and started having massive panic attacks when left alone (while dad goes to work). Meanwhile, the tremors as still really bad.

So she's been back on the Aricept for a few days, and we'll see how that goes, see if she improves again, and see what the neuro psych has to say about all of that. It's hard to know if her issues are alzheimer's based, or depression / anxiety / mental health based. She seems to have truly given up. She can no longer put a jacket on by herself, she needs the same kind of assistance I give to my three year old daughter. And she can no longer put her shoes on by herself. I'm not sure if she can't or won't. I'm not sure if the pain is that bad, or if she's just given up.

I'm not entirely convinced that alot of her dependency issues are much to do with alzheimers. But believe that a large portion of it is based on anxiety and depression and just giving up because the prognosis is bad. There is this massive battle going on. Mum is in constant pain, enough pain that she won't dress herself, or put her shoes on because the bending and twisting cause too much pain, but she refuses to go to the pain clinic, because she fears becoming addicted and dependant on pain drugs. Same reason she refuses to be hospitalised to sort out her depression medication, because she's worried about being drugged out. But she can't do anything! It's painful for her to stand up at the sink and peel 3 potatoes or do a load of dishes.

My dad gets so angry that every time he takes her to the GP or the hospital about bad panic attacks, all they do is give her valium. But she's not seeing a psychologist. There really are no other ways (that i'm aware of) to deal with panic attacks than psychology / counselling or drug threrapy with anti depressants and valium type drugs. Doesn't matter how many time we talk about going to a psychologist, it never happens. She goes to the dentist, the physio, the chiro, the alzheimers specialist, the neuro psych, the gp, but the psychologist is never on the list. I know that dad probably gets a bit paranoid that he'll be in the firing line, but hell, she needs to sort out some of her demons, and fast. She needs to be able to open up to someone about her fears and concerns.

He ignores the fact that she has been chronically talking / yelling / screaming / punching / kicking etc. in her sleep for over a decade now (every night, multiple times, for long periods of time).  He doesn't even begin to think that could be related to mental issues.

Not to mention the next big issue. She has 2 replaced knees, and needs to get them both re-done. And she doesn't want to go under general anaesthetic. She struggles with generals, so wants to try and get both knees replaced, at once with a spinal block... conscious... I've tried to tell dad that "what about panic attacks?" I mean they have to get saws and hammers out, and he thinks she'll be ok if he sits with her.... As if she's not going to have a panic attack or 20. She had a panic attack at the dentist the other day with having her false teeth mould taken, she had to leave, and try again another time it was that bad.

And I've tried to broach the subject of the fact that she'll need to recover in respite, as he won't be able to lift and shower her and toilet her without extra special equipment etc.

And I haven't even broached the subject of the fact that a massive operation like that, she'll probably need to be fully taught how to walk again, with the mental issues she has, that will be quite a task, and along with the alzheimers issues, it will be challenging to say the least, and that she won't recover as easy as the last 2 times she had those surgeries over a decade ago.

And that it could well send her alzheimers into a massive tailspin....

And there is a possibility that she may not learn to walk properly again if the alzheimers and mental issues cause problems.  He seems to think (or say anyway) that it'll be ok. I think, that it'll be far from ok.

Arghhhhh.

Another aged care issue to add to the list

This one is not about my mum. Another person in my family is aged and ill. He is 89 this year, he has legionaires disease, drop foot and won't accept a care package. He has no family, only step family. None of him or his siblings ever had children, so it's us, the step family that are obliged to try and help him, when he won't accept help from anyone else. He's ill, he is on the verge of getting pnumonea yet again, as he seems to do every year. The pattern has emerged, and i've picked it. He gets sick in the winter, ends up in hospital in a  very poor state to the point that he decides he needs care and nursing home, and that this is almost the end, and he accepts that. Then he is waiting for a place in the nursing home to come up, gets better, summer comes, and then he feels great again. He doesn't need help, he's in good spirits, feels better than ever, and doesn't accept the care package, and decides that he no longer wants the nursing home, so is put off the waiting list.

Then winter comes, and it's all on again.

So, he's on the verge of hospitalisation again, on the verge of going back on the waiting list for the nursing home again, but, yet again, won't be given a place immediately in a nursing home, so will get better and back to the start again.

It astounds me that for someone who lives alone, only has 2 couples in the whole world that visit him, doesn't accept outside help. I feel for him, but I have a whole bucket of people who are in front of him on my priority list who are close family, who are all sufferring their own health problems. I can't be everything to everyone, and I almost feel like it has to reach crisis point before something will be done. It is so very hard, because he has nobody in his life who has the power to "make decisions for him". He has no family. So who is going to push for extra care. I lead the horse to water, but I don't have the power to force him to drink. He sees me as his grand daughter, but I don't have the power to tell him that he needs to go into a nursing home.

So there we are, stale mate. I'll have to waste hours and hours on the phone, getting pushed from department to department, getting him assessed, getting him on waiting lists for nursing homes again, to know that he won't get in, and then he'll take himself off the list as soon as summer comes around again. What a malarky!

To the future...

To the future,

I would like to state, very clearly, that if I should ever be so unfortunate as to be diagnosed with dementia, or alzheimer's that I do not expect anyone, particularly, my family to sacrifice their perfectly good life to care for me once my quality of life is poor. Once I can no longer look after myself. Once I am incontinent, aggressive, abusive etc. I do not wish to be kept alive by medical means. I do not wish to be taking constant medications that do nothing to help my situation. I do not want to be rescuscitated, I do not want life saving treatments to be administered and in no way, do I want my life prolonged.

My only hope for the future is that voluntary euthanasia becomes legal and readily available where I live by the time that comes (if it comes) for me.

I hope that my family can get past any guilt they may feel for jamming me in a nursing home. Even though I may not feel it at the time, and I may fight and kick and scream about it later on down the track. Right now, I am ok with being jammed in a home in order than my children and partner may have the potential to enjoy their lives without having to sacrifice everything for me.

That is all for now!

Life in reverse

It's very difficult for elderly or ill people to be humble enough to accept that their children might know better than them. And the children are so arrogant (including myself) to think that we know best, and the solutions are simple and obvious. 


Vicious circle. 


At some point, as frustrating as it is, we children have to step back and let the inevitable happen and stop trying to control it.  It's hard, virtually impossible to stand by idly and watch, at the ready to offer help and support when (and if) they are prepared to accept it. 


I hear a lot of stories of children and partners with ill and ageing loved ones, getting so stressed about the natural progression (myself included). 


When people are in their end stages and stop eating, it's natural, but we can't accept it, when they sleep all day, we can't accept it, but it's natural. when they die, we can't accept it, but it's natural. We want them to take a pill or go to a specialist to fix it, but it's not always possible or even worthwhile. We want to blame partners, family, doctors, nurses, carers for every little thing, but they can't live forever, they will have accidents, they will fall, they will deteriorate. 


This is how it feels for me, right now as a 36 year old with small children and a menagerie parents and grandparents, getting older and more ill. It seems like aging, is the whole life story in reverse. 


In comparison it's easy to let your kids grow up.  Every year, they are more capable, smarter, able to do more, bigger, faster, stronger, better than the year before. So it's natural to let go control slowly until they look after themselves.  Unfortunately, it doesn't feel so natural the other way round, slowly relinquishing control and admitting that you are getting less and less cabable, less fast, less strong, less able, than the year before. 


Sounds easy on paper, not so much in real life. 

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!