I often wonder to myself about the effects on the carer of having to bite one's lip all the time. I know on occasions I have taken out my feelings of frustration and anger, out of my mother's direct line of vision, by slapping or punching something inanimate. But I can remember one day when things really got to me, I opened my mouth, took a deep breath, and let out a big, long scream - for as long as I had wind to carry on.
I have never - ever - been a screamer, but I do have a good pair of lungs, having walked the high country in my former life in Wellington.
I was about 6 feet from my mother at the time, and while I did this she sat calmly in her chair watching. As soon as I finished she looked at me completely deadpan and said, "Well, I have never done anything like that." Always matter-of-fact, my mom.
This floored me. I bit my lip. No mother I'm sure you probably haven't but then you have never been where I am either. If I remember right, your mother had to look after herself. Well, I certainly didn't scream for effect - it was a reaction out of pure frustration and despair - but the response was an education to say the least.
So I have gradually learned that it's absolutely pointless to expect any kind of reaction when MY feelings or health are at stake. And that is actually quite hard to take - probably one of the hardest things the Carer has to get used to. It's like the final straw on the back of the "overworked and underpaid" camel. It reinforces the feeling of being alone if you have no partner for support, and it does nothing for the Carer's self-esteem and sense of worth.
My mother is quite a light sleeper, and if I'm ever awake in the night I'm very careful to make no noise whatever for fear of waking her up. But I can think of at least 2 nights when I've had to leap out of bed several times and throw up quite violently in the bathroom about 20 feet from where she sleeps, and she managed to sleep blissfully through THAT on both occasions!
Maybe the Alzheimers psyche develops some kind of self -preservation mode that selects for processing only information that is useful for its own wellbeing ... Come to think of it, in an organism that's operating well blow par, that makes sense.
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alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Friday, July 11, 2008
Monday, July 07, 2008
A Really Funny Story
This story is an absolute hoot and still makes me crack up every time I think of it.
My main design client on the Internet is an Australian company called Community Enabler. They are setting up a wonderful, free, worldwide Social Networking system called Cagora which will enable people to advertise, share and connect with others both locally on Local World websites (eg USA, Texas, Costa Mesa or Far North New Zealand ), and also on what we call Worlds of Interest (eg Dogs, Photography, Travel, Christianity - whatever people have a passion for). This very special Social Networking complex has a substantial architecture behind it, including live chatrooms for meetings or seminars.
My function is to design page headers for the various Worlds, and I attend regular company meetings in one of the chatrooms, to keep up-to-date with the latest company news. I need to explain that once in a room you can hear the voice of whoever currently "holds the mic", and to speak in the room you need to press your CTRL key when no-one else is talking.
One memorable day I attended the early morning meeting (my time) and then went upstairs to do something - wash dishes or bake some bread or muffins, I'm not sure which. In any event, I was gone for some little while: there always comes a point when you actually have to catch up on all the stuff you've been rushing away from every day...
Suddenly the phone rang. It was the Boss, ringing from Australia, no less. "Are you allright?" he asked. "Yes" I replied in amazement, "I'm fine - Why?"
Well, here's the story. Everyone had left the chatroom except me and the moderator. One of my cats must have walked on my keyboard and set off the CTRL key so that all of a sudden my household was broadcasting to the room. (Thank goodness half the membership wasn't still in there!) My mother was doing her rave, and the cat was cheerfully stomping around on the keyboard. Why is it that cats always HAVE to walk where they are not supposed to?
Poor Steve listened in horror, convinced that I had finally gone totally bananas and was sitting there in cloud cuckoo land warbling and banging on the keys. He couldn't get a word in edgeways because the CTRL key had locked itself and finally in panic mode he IM'd the Boss in Melbourne and told him what was going on. Rob being the caring guy he is, promptly got on the phone.
Beloved cats - beloved mother! Beloved Internet. The ripples went from New Zealand to Minnesota, from Minnesota to Melbourne, and then back to New Zealand. When you think about it, it's quite marvellous how good friends from across the world can set off the alarm to check up on you. Hilarious and embarrassing as it all was, it gave me a wonderful feeling of being cared for by others, albeit thousands of miles away!
- - -
Technorati Tags:
alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
My main design client on the Internet is an Australian company called Community Enabler. They are setting up a wonderful, free, worldwide Social Networking system called Cagora which will enable people to advertise, share and connect with others both locally on Local World websites (eg USA, Texas, Costa Mesa or Far North New Zealand ), and also on what we call Worlds of Interest (eg Dogs, Photography, Travel, Christianity - whatever people have a passion for). This very special Social Networking complex has a substantial architecture behind it, including live chatrooms for meetings or seminars.
My function is to design page headers for the various Worlds, and I attend regular company meetings in one of the chatrooms, to keep up-to-date with the latest company news. I need to explain that once in a room you can hear the voice of whoever currently "holds the mic", and to speak in the room you need to press your CTRL key when no-one else is talking.
One memorable day I attended the early morning meeting (my time) and then went upstairs to do something - wash dishes or bake some bread or muffins, I'm not sure which. In any event, I was gone for some little while: there always comes a point when you actually have to catch up on all the stuff you've been rushing away from every day...
Suddenly the phone rang. It was the Boss, ringing from Australia, no less. "Are you allright?" he asked. "Yes" I replied in amazement, "I'm fine - Why?"
Well, here's the story. Everyone had left the chatroom except me and the moderator. One of my cats must have walked on my keyboard and set off the CTRL key so that all of a sudden my household was broadcasting to the room. (Thank goodness half the membership wasn't still in there!) My mother was doing her rave, and the cat was cheerfully stomping around on the keyboard. Why is it that cats always HAVE to walk where they are not supposed to?
Poor Steve listened in horror, convinced that I had finally gone totally bananas and was sitting there in cloud cuckoo land warbling and banging on the keys. He couldn't get a word in edgeways because the CTRL key had locked itself and finally in panic mode he IM'd the Boss in Melbourne and told him what was going on. Rob being the caring guy he is, promptly got on the phone.
Beloved cats - beloved mother! Beloved Internet. The ripples went from New Zealand to Minnesota, from Minnesota to Melbourne, and then back to New Zealand. When you think about it, it's quite marvellous how good friends from across the world can set off the alarm to check up on you. Hilarious and embarrassing as it all was, it gave me a wonderful feeling of being cared for by others, albeit thousands of miles away!
- - -
Technorati Tags:
alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
Sunday, July 06, 2008
Exhaustion
The exhaustion that results from long-term full-time caring is something that not many people appreciate. Those who have never looked after an elderly person have absolutely no idea of how deep-seated this exhaustion can be. They assume it's all some kind of a stay-at-home picnic. See my earliest posts for thoughts on uninvolved relatives doing a whitewash job to ease their own consciences...
The first time my mom went into Respite Care for a week - it would have been early 2006, when I had already been looking after her for 9 years - I slept 12 hours a night for the first 5 nights in a row. It was midsummer and I'd decided to use my time off to develop a small shrubbery-border alongside the house. The outside work did me good, and as physical activity does, no doubt helped me sleep. But I found I was going to bed at 9.00pm, while it was still light, and not waking up till 9.00 am the next morning - broad daylight. And I don't ever take sleeping tablets. It was just badly-needed rest, I suspect.
Only people who have "been there, done that" know what this level of tiredness is like - or people who have had the experience in their family. This was brought home to me recently when some local friends suddenly became concerned for MY welfare because the wife's married sister nearly had a nervous breakdown looking after her mother, who is a whole lot more "with it" than mine. I have known these people for 9 years - throughout my carer years in fact - and I have never before felt this level of concern from them...
Stick around and find out what it's like to be a Caregiver!
- - -
Technorati Tags:
alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
The first time my mom went into Respite Care for a week - it would have been early 2006, when I had already been looking after her for 9 years - I slept 12 hours a night for the first 5 nights in a row. It was midsummer and I'd decided to use my time off to develop a small shrubbery-border alongside the house. The outside work did me good, and as physical activity does, no doubt helped me sleep. But I found I was going to bed at 9.00pm, while it was still light, and not waking up till 9.00 am the next morning - broad daylight. And I don't ever take sleeping tablets. It was just badly-needed rest, I suspect.
Only people who have "been there, done that" know what this level of tiredness is like - or people who have had the experience in their family. This was brought home to me recently when some local friends suddenly became concerned for MY welfare because the wife's married sister nearly had a nervous breakdown looking after her mother, who is a whole lot more "with it" than mine. I have known these people for 9 years - throughout my carer years in fact - and I have never before felt this level of concern from them...
Stick around and find out what it's like to be a Caregiver!
- - -
Technorati Tags:
alzheimers, alzheimers care, dementia, caregiver, alzheimers disease
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