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.
Tuesday 11 September 2012
Sunday 29 July 2012
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!
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!
Friday 20 July 2012
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!
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!
Tuesday 26 June 2012
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.
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.
Thursday 31 May 2012
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.?!*
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.?!*
Friday 4 May 2012
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".
Sunday 15 April 2012
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.
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.
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