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.?!*