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!