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.