My sister is getting married later in the year. Mum is fixated on going, travelling across the world on a 20 hour flight to see this wedding.
I believe she is in no fit state to do the trip. She has Alzheimer's and Parkinsons.
Last time she flew that flight, she had full blown panic attacks, crying, screaming "get me off, get me off" etc. This was 4 years ago when she was a normal functioning working independent adult. Public transport was causing panic attacks, crowds and cars and confined spaces were causing panic attacks etc. Two years after that she was diagnosed with alzheimers, then a year later parkinsons.
She can't even go into a cinema without having a panic attack. She gets agitated and confused easily, she gets quite aggressive towards dad (her carer). She is only 60, and she does deserve to go to her daughters wedding, but I can't see it working. She doesn't adjust well to anything that isn't her usual environment.
I can't see it being anything but a train wreck. A very very expensive train wreck at that. After many hours of conversations, I think I have made a decision. If they (mum and dad) are going, I won't be going. As harsh as it is, I don't have the money, I never go on holidays overseas, and I can't justify spending that much money, money that I don't have, on a holiday that will be a complete train wreck.
If mum and dad don't go, I will go into debt and put the holiday on my credit card, because I will enjoy the experience. I'll travel, on my own (can't afford to take my partner and children) and I will have fun, I will enjoy the wedding and the experience in general. I will support my sister and be there for her. But unfortunately, I can't go into debt, to endure the stress and have a hideously unpleasant experience that will be nothing but a nightmare experience to remember forever.
I know that will hurt my sister, but it won't make the experience any better for having me there. It will be a disaster, with or without me spending money I don't have.
Sunday 1 June 2014
Thursday 27 March 2014
This week I have felt quite envious
It feels terrible to say it, and fills me with all kinds of guilt, but someone I know lost their mum this past week to cancer. I felt somewhat envious. It was about 8 weeks between diagnosis and death. It was a whirlwind (or should I say tornado) of events for the family in those 8 weeks from diagnosis, 100% dietary changes, to surgery, a pretty bad prognosis, then a whilrwind trip to Mexico to have an alternative therapy, back home again, preparing for chemo, and then she sadly passed away before she could have the chemo.
It's terribly sad that someone with so much energy, fight, and passion for life was taken away so quickly. But at the same time, it wasn't a long and torturous death, it didn't drag the family through years (or decades) of pain and emotional turmoil. The fight was over almost as quickly as it began.
That's all I have to say. I know it sounds wrong on so many different levels, but I guess if I were to have a choice, I'd choose a quick death over a slow death any day. I've said it before, and no doubt I'll say it many times again, that in my mum's scenario, cancer would be the silver lining, the easy (easier?) out.
It's terribly sad that someone with so much energy, fight, and passion for life was taken away so quickly. But at the same time, it wasn't a long and torturous death, it didn't drag the family through years (or decades) of pain and emotional turmoil. The fight was over almost as quickly as it began.
That's all I have to say. I know it sounds wrong on so many different levels, but I guess if I were to have a choice, I'd choose a quick death over a slow death any day. I've said it before, and no doubt I'll say it many times again, that in my mum's scenario, cancer would be the silver lining, the easy (easier?) out.
Wednesday 19 March 2014
Is it really Alzheimers?
Mum and Dad went to see the neuro psych who discharged her last year as he was no longer working at that particular hospital. Mum, decided that she wanted to see him again, and so they tracked him down and made an appointment.
They came over after the appointment and told me that it was a great appointment, he was really good today, that his question to them was "Is it really Alzheimers?" I asked what was that based on, mini mentals tests etc? Yes. Apparently he done a different type of mini mental type test, and the result wasn't that great. But for some reason he feels that it may not really be Alzhiemers.
He is trying her on a new Parkinsons's patch which apparently they've had some success with dealing with the "pain" issue. And if she can cope with the side effects of that, he might be able to take her off some of the narcotic pain killers. Which my Dad is all for, he hates how much medication she is taking, and is very anti-drugs.
I've never liked this Dr, he has no people skills as far as I'm concerned. And it seems that the one appointment I didn't go to, he's come up with some ground breaking hypothesis. I hope he's right, but I doubt it. If it's not alzheimers, she has some very very serious mental conditions going on. They have another appointment today, with her usual very good geriatrician. I have to work, so won't be able to attend. The joys of returning to work 6 days a week now my kids are in school.
I don't think it's a very professional thing to do to put a big question like that out there to someone with Alzheimers. If she does have Alzheimer's, it's false hope, setting her up for yet another massive kick in the guts when she is re-told that unfortuntely, all hope is lost, yet again, the initial double diagnosis of Alzheimer's and Parkinson's still stands. Honestly? Can you not do A LOT more searching and diagnosing and testing than one quick appointment to try and come to those kinds of conclusions? Can you not think of the mental chaos that would throw you into as a family?
Mum would be celebrating in her mind, yay, it's not Alzheimer's, jackpot. But then to be told again that it is later, will break her shattered heart into a thousand more pieces.
That after everything else, would be horrible for her. And if that's the case that she has to be re-diagnosed, re-told the bad news, and then in a few months her birthday comes up and she'll likely lose her licence again, after having it taken away, then given back already once before... No wonder the poor woman is an emotional wreck, She's been on the never ending roller coaster.
I'd love to be positive and hopeful for her, and I hope it's true, but in this doctor, I simply have no faith. I'll wait and hear what the geriatrician with a sense of logic and good people skills has to say about it. I at least have faith in her and will listen to her opinion before getting even a little bit hopeful. I know he's a neuro psych, and he's probably very smart, but it takes alot more than academics to make a good doctor, some of them should never be put into the ring with actual patients to toy with their emotions and lives.
They came over after the appointment and told me that it was a great appointment, he was really good today, that his question to them was "Is it really Alzheimers?" I asked what was that based on, mini mentals tests etc? Yes. Apparently he done a different type of mini mental type test, and the result wasn't that great. But for some reason he feels that it may not really be Alzhiemers.
He is trying her on a new Parkinsons's patch which apparently they've had some success with dealing with the "pain" issue. And if she can cope with the side effects of that, he might be able to take her off some of the narcotic pain killers. Which my Dad is all for, he hates how much medication she is taking, and is very anti-drugs.
I've never liked this Dr, he has no people skills as far as I'm concerned. And it seems that the one appointment I didn't go to, he's come up with some ground breaking hypothesis. I hope he's right, but I doubt it. If it's not alzheimers, she has some very very serious mental conditions going on. They have another appointment today, with her usual very good geriatrician. I have to work, so won't be able to attend. The joys of returning to work 6 days a week now my kids are in school.
I don't think it's a very professional thing to do to put a big question like that out there to someone with Alzheimers. If she does have Alzheimer's, it's false hope, setting her up for yet another massive kick in the guts when she is re-told that unfortuntely, all hope is lost, yet again, the initial double diagnosis of Alzheimer's and Parkinson's still stands. Honestly? Can you not do A LOT more searching and diagnosing and testing than one quick appointment to try and come to those kinds of conclusions? Can you not think of the mental chaos that would throw you into as a family?
Mum would be celebrating in her mind, yay, it's not Alzheimer's, jackpot. But then to be told again that it is later, will break her shattered heart into a thousand more pieces.
That after everything else, would be horrible for her. And if that's the case that she has to be re-diagnosed, re-told the bad news, and then in a few months her birthday comes up and she'll likely lose her licence again, after having it taken away, then given back already once before... No wonder the poor woman is an emotional wreck, She's been on the never ending roller coaster.
I'd love to be positive and hopeful for her, and I hope it's true, but in this doctor, I simply have no faith. I'll wait and hear what the geriatrician with a sense of logic and good people skills has to say about it. I at least have faith in her and will listen to her opinion before getting even a little bit hopeful. I know he's a neuro psych, and he's probably very smart, but it takes alot more than academics to make a good doctor, some of them should never be put into the ring with actual patients to toy with their emotions and lives.
Wednesday 29 January 2014
New Year, new changes
This year, I've discovered that we, as a family have had to make some more changes. Christmas was a reasonable success, partly due to the fact that we discussed in great detail, and decided that we would lower our expectations and demands, and that anything beyond a complete disaster, would be a success. And that it was. We went to Mum and Dad's for Christmas. They made a roast, we bought some prawns, and all was well. The kids got suitable presents that weren't embarrassing on inappropriate, tick. Lunch was a success, tick. We left in the afternoon with little stress, tick. The bon bons were forgotten til after lunch, so we cracked them after we'd eaten, that's fine, no big deal.
We went camping after christmas, and we took my mother in law as well as the cousins. This was also a pretty good success.
Since coming home, the mother inlaw has had an accident in her car (her partner driving) and written off the car. She's also been to her doctor and been told that she's had another MS attack. She obviously does far too much and doesn't look after herself anywhere near enough. Her partner is verging on half blind, and shouldn't be driving, we also suspect he has Vascular Dementia, but we're struggling to get a diagnosis. Mother in law copes very well and her MS is very well managed through drugs.
She is the type of person who never says no, to anyone. She always says yes to babysitting, even if it's inconvenient or excessive driving. She looks after her partner, who has many and varied problems. She looks after my sister inlaw's kids and various other members of her partners side of the family. Her and her partner live in separate houses, but together, so they travel over 100km between these two houses. They manage 2 homes and alot of driving.
We've had to make a decision to take away most of her baby sitting, as much as she loves it, and as much as it hurts her, because she just does too much driving, too much running around. Hopefully the goal for this year, is to get them to slow down, stop travelling the 100+km trip multiple times in a week, and when they go to one house, they stay there for a week or 2 rather than back and forth doing hundreds of km in travel each week. I am hopeful and doubtful at the same time. But at this point, all I can do, is take away any further obligations she has to help us out.
We went camping after christmas, and we took my mother in law as well as the cousins. This was also a pretty good success.
Since coming home, the mother inlaw has had an accident in her car (her partner driving) and written off the car. She's also been to her doctor and been told that she's had another MS attack. She obviously does far too much and doesn't look after herself anywhere near enough. Her partner is verging on half blind, and shouldn't be driving, we also suspect he has Vascular Dementia, but we're struggling to get a diagnosis. Mother in law copes very well and her MS is very well managed through drugs.
She is the type of person who never says no, to anyone. She always says yes to babysitting, even if it's inconvenient or excessive driving. She looks after her partner, who has many and varied problems. She looks after my sister inlaw's kids and various other members of her partners side of the family. Her and her partner live in separate houses, but together, so they travel over 100km between these two houses. They manage 2 homes and alot of driving.
We've had to make a decision to take away most of her baby sitting, as much as she loves it, and as much as it hurts her, because she just does too much driving, too much running around. Hopefully the goal for this year, is to get them to slow down, stop travelling the 100+km trip multiple times in a week, and when they go to one house, they stay there for a week or 2 rather than back and forth doing hundreds of km in travel each week. I am hopeful and doubtful at the same time. But at this point, all I can do, is take away any further obligations she has to help us out.
Wednesday 11 December 2013
Planning for christmas this year
This year is different from the past years. We've decided to sacrifice Christmas in order to not get stressed out about how it never works the way we plan it. In the previous few years we've spent countless agonising hours trying to plan it to get it to work the way we want. Each time, it didn't work the way we want and we spent hours and hours venting after a Christmas that didn't meet our expectations.
I've changed, this year, we're doing "whatever" and have decided to sacrifice Christmas and not worry so much when it doesn't go to plan, because we know it wont. We've decided to go to my parents place (a couple of hours driving) and we offered the option of going out to lunch or staying home. They've chosen to stay home, because Mum is increasingly uncomfortable with "making a mess of herself" in public. So, we'll take some prawns, Dad will whack on a bit of roast meat and see what happens.
The plan is, that we, for the first time since my children were born (7 christmas'), will have Christmas morning home alone as the nuclear family, to open the presents, have breakfast, then drive to my parents, have lunch, then leave when we've had enough. It's becoming clear that we cause stress and anxiety when we stay at their house, so we will just leave, so they can relax after lunch without the stress of visitors staying.
If lunch is a disaster, it's ok, we have prawns, and that will do. Then on the way home, if it's hot, we'll go to the beach and have a swim. We will be going away for a week after Christmas this year, so we'll celebrate then if Christmas doesn't work out.
Fingers crossed, we can execute our goal of not stressing out about a disastrous Christmas.
I've changed, this year, we're doing "whatever" and have decided to sacrifice Christmas and not worry so much when it doesn't go to plan, because we know it wont. We've decided to go to my parents place (a couple of hours driving) and we offered the option of going out to lunch or staying home. They've chosen to stay home, because Mum is increasingly uncomfortable with "making a mess of herself" in public. So, we'll take some prawns, Dad will whack on a bit of roast meat and see what happens.
The plan is, that we, for the first time since my children were born (7 christmas'), will have Christmas morning home alone as the nuclear family, to open the presents, have breakfast, then drive to my parents, have lunch, then leave when we've had enough. It's becoming clear that we cause stress and anxiety when we stay at their house, so we will just leave, so they can relax after lunch without the stress of visitors staying.
If lunch is a disaster, it's ok, we have prawns, and that will do. Then on the way home, if it's hot, we'll go to the beach and have a swim. We will be going away for a week after Christmas this year, so we'll celebrate then if Christmas doesn't work out.
Fingers crossed, we can execute our goal of not stressing out about a disastrous Christmas.
Tuesday 19 November 2013
Broken wrist
I got a phone call from mum today. Apparently she has broken her wrist. She had a fall yesterday morning out near the barbecue area (nice even flat pavers). They have put a back slab on the arm and she'll see the ortho on Friday to see if she needs a full cast.
She must have had about half a dozen falls this year at least. Things are obviously getting harder and harder for her to do, she still tries to do some things, but they live on a large 2 acre block which is in a hilly area, lots of uneven ground, steps, rocks, etc. I doubt she even goes off the paved and concreted areas these days mostly, but still manages to fall very regularly. She's becoming a prisioner in her own home. She can't go up to the clothes line (up a set of concrete steps, surrounded by rock walls). She really doesn't drive all that much anymore, and the shops are far too far away, and she's on a massive hill, so walking or even riding a mobility scooter is not an option as the hill is really steep.
Dad says they won't be moving until it's time for her to move into a nursing home because she just is so uncomfortable in unfamiliar surroundings, it would be too much for her. But she's stuck there, she can't do anything but sit in the house. I can't help but thinking that if they lived in the town, she could at least get a mobility scooter and get around safely a bit. If they moved into a smaller flat with all the disability aids she needs to help her around the house.
But, I have no say on the matter, so that is that.
She must have had about half a dozen falls this year at least. Things are obviously getting harder and harder for her to do, she still tries to do some things, but they live on a large 2 acre block which is in a hilly area, lots of uneven ground, steps, rocks, etc. I doubt she even goes off the paved and concreted areas these days mostly, but still manages to fall very regularly. She's becoming a prisioner in her own home. She can't go up to the clothes line (up a set of concrete steps, surrounded by rock walls). She really doesn't drive all that much anymore, and the shops are far too far away, and she's on a massive hill, so walking or even riding a mobility scooter is not an option as the hill is really steep.
Dad says they won't be moving until it's time for her to move into a nursing home because she just is so uncomfortable in unfamiliar surroundings, it would be too much for her. But she's stuck there, she can't do anything but sit in the house. I can't help but thinking that if they lived in the town, she could at least get a mobility scooter and get around safely a bit. If they moved into a smaller flat with all the disability aids she needs to help her around the house.
But, I have no say on the matter, so that is that.
Thursday 14 November 2013
Goodbye to a girl so young
Today I went to a funeral for a 9 year old girl. Her sister goes to school with my oldest daughter. She was very sick for 5 years, and it was anticipated that she would die, but was still a shock when it happened. I am lost for words really. It was so sad to see the family have to cope with their oldest daughter and her passing after 5 hard years of her becoming more and more disabled with each passing year. She out lived her life expectancy, and I'm sure it is something of a relief that she is now freed from being trapped inside her broken little body.
I feel for the family, although they will probably sleep better at night now that they don't have to sleep with one eye open, they don't have to go in each morning wondering if she'll be dead or alive, but they'll still have guilt when they have a good night sleep, and they'll be able to enjoy doing all the things that they couldn't do with a wheelchair bound child, but still the guilt follows each time you enjoy something when part of your family is missing.
Rest in peace little angel, I hope heaven is better for you than the earth was.
I feel for the family, although they will probably sleep better at night now that they don't have to sleep with one eye open, they don't have to go in each morning wondering if she'll be dead or alive, but they'll still have guilt when they have a good night sleep, and they'll be able to enjoy doing all the things that they couldn't do with a wheelchair bound child, but still the guilt follows each time you enjoy something when part of your family is missing.
Rest in peace little angel, I hope heaven is better for you than the earth was.
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