Growing up with Mum and her disability often made me feel defensive, the desire to protect her (and myself) when I was a teenager was overwhelming, I don't suppose I was very friendly as a result, people would only need to point out something very small in her behavior for me to feel that she was being attacked and for me to view that person in a most ungenerous way.
Of course this defense mechanism did not start in a vacuum, certain nasty incidents occurred for me to develop it, after all, one must be quite badly stung in order to recognize the potential for it to happen again.
As with most surprisingly hurtful incidents I did not see it coming, it happened only a few weeks into Mum's accident, while she was still in a coma.
I had called my best friend to chat. I very much needed to by this stage, but I felt rather uncomfortable reaching out to her as I noticed that she had been avoiding my calls, now I finally had got hold of her and an awkward conversation ensued, we spoke in a stilted way, until finally I asked the question that had been nagging me,
"Julia when are you coming to visit?"
The response I received made me cold on the spot, "I'm sorry but I'm not, it's just too much, I'd rather remember your Mum the way she was".
Really.
I was amazed, she spoke as if she were dead, and it was necessary to preserve her memory rather than accept reality, I felt furious and helpless, it wasn't even her mother and she was telling me she couldn't deal with it? and yet I ended up consoling her, I told her that I understood, that it was too much to ask, that she shouldn't feel guilty, that her reaction was natural.
While I was talking I almost succeeded in convincing myself that it may be true, it was a difficult situation, Mum was so altered now that I shouldn't expect people to be able to handle it, to be there, it may be too much to ask.
It was the first time I felt that we were now really different from normal people.
It was a truly horrible isolating feeling.
So now I knew that one of the people I always thought I could rely on wouldn't be there for me, it made me question everybody else.
It took a long time before I was able to see things differently, my tolerance towards people who did not accept Mum the way she was became zero, and I won't lie to you, it still is, but my reaction towards some peoples awkwardness around Mum changed, I saw that the more natural and open I was, the more it came out in others, and that when I didn't look for the sting that I had come to expect, I often didn't find it.
Tuesday, December 21, 2010
Friday, November 19, 2010
Early days....III
Right now I can only write this story in fragments, I can't write about the actual accident yet, only the aftermath.
I don't know why this is, as I have no problem telling people directly when they ask me, but talking to you is different, even though we haven't met, it seems more confronting, isn't that odd? I have often had Mum sitting next to me in her wheel chair as a stranger asks " what happened?" and I tell them, she even seems to delight in me telling them, the more horrible the details the better, but I can't do that here, it is impossible, I can only give you snap shots, and even then only one at a time.
So here is one,
Before her accident Mum was a high achiever, apart from being very beautiful, she was incredibly talented, artistic, and highly driven, she and my father worked together in their fashion business, and through their collaboration stocked some of the best shops in Melbourne, I have been told on many occasions that I was one of the best dressed children due to Mum's clever designs.
I grew up knowing that Mum was very gifted and that I had luckily inherited some of her talents.
I thought that I might become an artist, or possibly a designer, who knows, I still might, but there was one thing I never anticipated.
Guilt.
It is a very difficult feeling to overcome, and I suppose rather hard to explain, but this is what I mean, once you have someone in your life who is disabled you begin to feel horrible about doing or enjoying things that they can't, you feel as if your betraying them by wanting to follow your own dreams, now that they are unable to, and as a result you start leading a half life.
I know that for me I started acting on this guilt very quickly.
Soon after Mum's accident while I was still thirteen I moved out of my bedroom and began to sleep in the lounge or on the floor of my parents room, it seemed to me to be very selfish to continue to enjoy the facets of our old life now that Mum couldn't, so I evicted myself, and nothing symbolized that life better than my bedroom.
It was a beautiful room, mostly white with pink and mint accents, it was filled with porcelain dolls that Mum had selected, a lot of lace, and ribbons, and many books. My friends when they came over were is raptures to play in there, it was very much like being dolls in a life size dolls house.
Now I hated what it meant, I couldn't stand being in there, it now represented everything I shouldn't allow myself to enjoy anymore, everything that had been mine that was now lost to me.
The only person who could have perhaps recognized this behavior as unhealthy was Dad, the irony there being that he was doing the exact same thing in various areas of his life, so in our case it would have been the blind leading the blind, our thinking being too similar to help one another.
I didn't sleep in a room of my own for the next 7 years.
I assume that guilt is a universal feeling amongst families with a disabled member, I wonder at how it affects them? whether it can eventually be ignored or reshaped into something healthier and more productive?, I don't know, all I do know is that for me it shaped the course of my life, and plays an intricate part in all my decisions. It is a strong force, but thankfully not the only guiding one.
I don't know why this is, as I have no problem telling people directly when they ask me, but talking to you is different, even though we haven't met, it seems more confronting, isn't that odd? I have often had Mum sitting next to me in her wheel chair as a stranger asks " what happened?" and I tell them, she even seems to delight in me telling them, the more horrible the details the better, but I can't do that here, it is impossible, I can only give you snap shots, and even then only one at a time.
So here is one,
Before her accident Mum was a high achiever, apart from being very beautiful, she was incredibly talented, artistic, and highly driven, she and my father worked together in their fashion business, and through their collaboration stocked some of the best shops in Melbourne, I have been told on many occasions that I was one of the best dressed children due to Mum's clever designs.
I grew up knowing that Mum was very gifted and that I had luckily inherited some of her talents.
I thought that I might become an artist, or possibly a designer, who knows, I still might, but there was one thing I never anticipated.
Guilt.
It is a very difficult feeling to overcome, and I suppose rather hard to explain, but this is what I mean, once you have someone in your life who is disabled you begin to feel horrible about doing or enjoying things that they can't, you feel as if your betraying them by wanting to follow your own dreams, now that they are unable to, and as a result you start leading a half life.
I know that for me I started acting on this guilt very quickly.
Soon after Mum's accident while I was still thirteen I moved out of my bedroom and began to sleep in the lounge or on the floor of my parents room, it seemed to me to be very selfish to continue to enjoy the facets of our old life now that Mum couldn't, so I evicted myself, and nothing symbolized that life better than my bedroom.
It was a beautiful room, mostly white with pink and mint accents, it was filled with porcelain dolls that Mum had selected, a lot of lace, and ribbons, and many books. My friends when they came over were is raptures to play in there, it was very much like being dolls in a life size dolls house.
Now I hated what it meant, I couldn't stand being in there, it now represented everything I shouldn't allow myself to enjoy anymore, everything that had been mine that was now lost to me.
The only person who could have perhaps recognized this behavior as unhealthy was Dad, the irony there being that he was doing the exact same thing in various areas of his life, so in our case it would have been the blind leading the blind, our thinking being too similar to help one another.
I didn't sleep in a room of my own for the next 7 years.
I assume that guilt is a universal feeling amongst families with a disabled member, I wonder at how it affects them? whether it can eventually be ignored or reshaped into something healthier and more productive?, I don't know, all I do know is that for me it shaped the course of my life, and plays an intricate part in all my decisions. It is a strong force, but thankfully not the only guiding one.
Tuesday, November 16, 2010
Early days....II
It is very easy to take things for granted, once one has become complacent.
It seems natural that things will go on as they have always done, like one long stretch of the same day, the same actions, the same people, just with a slightly altered script. It's only when something changes, something drastic occurs, that we might remember how easily everything can shift from one reality to another.
Once Mum had had her accident small milestones became triumphs, things that I never would have considered before became the focus of entire days, and all our energy went into helping her grasp basic functions, like holding a glass of water.
I was fourteen when Mum started coming home for short visits from the hospital, she was often highly distressed, a safety belt was locked into place across her chest to prevent her from throwing herself out of the wheel chair, not that it stopped her from trying (even with brain damage Mum remained fiercely determined) she was often fixated on asking the same question over and over again, and due to her full body spasms would become tense when she didn't like or understand the answer.
One favorite question was "how tall are you?" it seems harmless enough now, but at the time it drove me crazy, as the only way to answer her was to show her, I would have to stand up like a puppet as many as 30 times in a row so she could see, be satisfied, then forget and ask again.
Drinking a glass of water became the ultimate challenge.
Mum at the time was going through cold turkey from her myriad of medications, and was utterly convinced that she could drown herself with a drink, she would try and grip the glass, her arm and neck tensing, her fingers clawing, and given the opportunity would dump the entire contents on her head.
We would dry her off and try again, working to direct the glass to her mouth, she would spasm, angrily abuse us, and drink perhaps a quarter of what ever was in the glass.
This went on for weeks.
Suffice it to say straws became our new best friends.
Then one day it just changed, it was so unusual, I can't say what was different or why, but something clicked for her, the familiarity of the action overtook her thoughts, she held the glass and drank it carefully.
Dad and I were baffled and overjoyed, this action filled us with such a sense of accomplishment, that we were quick to tell everyone we knew about it.
It was so funny, we were giddy, Mum in one moment had filled us with hope, and the thought struck me then as it does now, small things can make you very happy, once big things have been taken away.
It seems natural that things will go on as they have always done, like one long stretch of the same day, the same actions, the same people, just with a slightly altered script. It's only when something changes, something drastic occurs, that we might remember how easily everything can shift from one reality to another.
Once Mum had had her accident small milestones became triumphs, things that I never would have considered before became the focus of entire days, and all our energy went into helping her grasp basic functions, like holding a glass of water.
I was fourteen when Mum started coming home for short visits from the hospital, she was often highly distressed, a safety belt was locked into place across her chest to prevent her from throwing herself out of the wheel chair, not that it stopped her from trying (even with brain damage Mum remained fiercely determined) she was often fixated on asking the same question over and over again, and due to her full body spasms would become tense when she didn't like or understand the answer.
One favorite question was "how tall are you?" it seems harmless enough now, but at the time it drove me crazy, as the only way to answer her was to show her, I would have to stand up like a puppet as many as 30 times in a row so she could see, be satisfied, then forget and ask again.
Drinking a glass of water became the ultimate challenge.
Mum at the time was going through cold turkey from her myriad of medications, and was utterly convinced that she could drown herself with a drink, she would try and grip the glass, her arm and neck tensing, her fingers clawing, and given the opportunity would dump the entire contents on her head.
We would dry her off and try again, working to direct the glass to her mouth, she would spasm, angrily abuse us, and drink perhaps a quarter of what ever was in the glass.
This went on for weeks.
Suffice it to say straws became our new best friends.
Then one day it just changed, it was so unusual, I can't say what was different or why, but something clicked for her, the familiarity of the action overtook her thoughts, she held the glass and drank it carefully.
Dad and I were baffled and overjoyed, this action filled us with such a sense of accomplishment, that we were quick to tell everyone we knew about it.
It was so funny, we were giddy, Mum in one moment had filled us with hope, and the thought struck me then as it does now, small things can make you very happy, once big things have been taken away.
Early days....
As a child I believe you can make anything fun, there is always an adventure you can imagine, an usual places that can become playground, and when I was thirteen that place was Royal Melbourne Hospital, and while my Mum was still in a coma, it was the most absorbing distraction I could of imagined.
To be honest I had to distract myself, one look at Mum with all those tubes coming out of her, I had fainted, so as only a child can do when overwhelmed by a situation, I let my mind wonder, I looked for escape, and I went to explore.
I started visiting other patients, it was great, often they were so medicated they thought they knew me, I'd sit down and chat away, keeping my eyes peeled for their relatives so that I could bolt from the room before I would need to explain what I was doing there.
I followed the nurses and did odd jobs for them, pretending I was one of the staff, I was a perpetual little lackey, running around the wards, but the most fun of all was taking my younger cousins with me on adventure rides in the lifts, we would wait for the doors to close, then jump up and down like little maniacs laughing hysterically.
Basically I did everything I could to avoid being in Intensive Care, I found that when I was in there too long I would have problems breathing, it was the most unusual feeling, my chest would constrict every time I inhaled, I would look at her, and I knew something had been broken, there was an element missing, it is hard to describe now, but even before I realized the extent of her injury, I could sense the damage.
Coping mechanisms and intuition in children are amazing, the ability to refocus is so strong, and comes so easily, I can honestly say that I dealt with everything that happened much better then than I would if you same events happened today, but then again that wishful thinking and imagination of a child to not really accept the reality may just be the juvenile version of adult denial.
To be honest I had to distract myself, one look at Mum with all those tubes coming out of her, I had fainted, so as only a child can do when overwhelmed by a situation, I let my mind wonder, I looked for escape, and I went to explore.
I started visiting other patients, it was great, often they were so medicated they thought they knew me, I'd sit down and chat away, keeping my eyes peeled for their relatives so that I could bolt from the room before I would need to explain what I was doing there.
I followed the nurses and did odd jobs for them, pretending I was one of the staff, I was a perpetual little lackey, running around the wards, but the most fun of all was taking my younger cousins with me on adventure rides in the lifts, we would wait for the doors to close, then jump up and down like little maniacs laughing hysterically.
Basically I did everything I could to avoid being in Intensive Care, I found that when I was in there too long I would have problems breathing, it was the most unusual feeling, my chest would constrict every time I inhaled, I would look at her, and I knew something had been broken, there was an element missing, it is hard to describe now, but even before I realized the extent of her injury, I could sense the damage.
Coping mechanisms and intuition in children are amazing, the ability to refocus is so strong, and comes so easily, I can honestly say that I dealt with everything that happened much better then than I would if you same events happened today, but then again that wishful thinking and imagination of a child to not really accept the reality may just be the juvenile version of adult denial.
Sunday, May 16, 2010
Side Effects
I think that one of the unusual side effects of being a Carer is that is quite easy to forget about caring for oneself, one just tends to manage,to make do, because the focus is never internal, that is until exhaustion or sickness take over and it becomes a necessity.
People always tell me to "take care of myself" I must say most of the time it bothers me, not that their concern (which is often genuine) is misplaced, but that after a day of thinking, worrying, and being constantly attuned to someone else, It just seems like an impossible thing to do. I barely feel like I have the head space to think about myself, and then if I do I don't like focusing on the fact that my body is aching from the lifts of the day, so I get into what I call Catch 22 Head space.
Catch 22 Head Space is knowing that you need to do something for yourself, (like take a rest) giving yourself a valid reason not to do it, (it's selfish because the person your caring for has to wait) then feeling lousy that you didn't listen to yourself, (your back feels buggered and a break would have helped) this kind of thinking can be applied to all areas of life not just care work.
Aahhh guilt, you have to love it! and the joke is I believe it is mostly self imposed, I don't know any other carers but I think that this is a universal similarity, because as much as genuine kindness and love are motivating factors to being a carer, guilt is an enormously powerful one.
People always tell me to "take care of myself" I must say most of the time it bothers me, not that their concern (which is often genuine) is misplaced, but that after a day of thinking, worrying, and being constantly attuned to someone else, It just seems like an impossible thing to do. I barely feel like I have the head space to think about myself, and then if I do I don't like focusing on the fact that my body is aching from the lifts of the day, so I get into what I call Catch 22 Head space.
Catch 22 Head Space is knowing that you need to do something for yourself, (like take a rest) giving yourself a valid reason not to do it, (it's selfish because the person your caring for has to wait) then feeling lousy that you didn't listen to yourself, (your back feels buggered and a break would have helped) this kind of thinking can be applied to all areas of life not just care work.
Aahhh guilt, you have to love it! and the joke is I believe it is mostly self imposed, I don't know any other carers but I think that this is a universal similarity, because as much as genuine kindness and love are motivating factors to being a carer, guilt is an enormously powerful one.
Thursday, May 6, 2010
When I choose my blog title I thought it might be a funny play on words, I'm a Carer.....who cares, lol sounds cliche now, never mind, I'm writing this in part to tell you what I do and in part to complain, not the generally accepted state of mind for me to be in, but really fun to explore when I'm writing.
I've been a carer for 17 years and I just turned 30, I always meet people who are pleased and full of compliments when I tell them what I do ( I sometimes wonder if this springs from a fear, flatter the carer we may need her one day:) as much as it is gratifying it's very tiring, mainly for me because it's my mother who I care for, so the immediate follow up question is "what happened?" this story I pretty much say word for word every time, till I realize I am numb and bored by relating it, even to kind people.
I'll tell you what happened later on.
A major part of care work I would describe as slop jobs, these are the jobs that you need to build up a strong stomach to do, if the person your caring for is totally dependent, toileting is the number one hurdle to jump over, it doesn't matter how good you are at it now, the first time is horrible, I was 14 and it was a fiasco, this will be my first story.
My dad was at work, and my auntie who lived with us left to go out with her boyfriend, so I was taking care of mum, not too long into it she told me she needed to go to the toilet, so I tried to call dad, but he was over an hour away, then tried to call my auntie but her phone was off, so in the middle of feeling furious at being stuck to do this, and panic,I put together a plan, I ran into the bedroom and pulled the mattress off the bed, dragged it into the living room and placed it next to her recliner, then I stripped the pillows off the coach and scattered them on the floor.
Mum was smiling vaguely at this commotion, I reached down to lift her trying to hook her arms around my back, and for about ten seconds we managed to balance, then we fell, ( I was 20 kilos lighter and she was on her tip toes, if we hadn't fallen it would have been a miracle!) so I gathered some garbage bags and towels and rolled them under mum, figuring I could just soak up whatever she did, ha ha, I hadn't thought about her moving her bowels, they where flying out like pebbles and I was running around like a chook without a head, being faced not only with a mess, but the first time no one to help me out, so I called dad yelling at him and trying to clean her up the best I could, oh god, it took forever, over an hour later it was over, I was exhausted, but mum was clean and comfortable lying on the mattress propped up watching Bonanza, and I flopped on the couch fairly shook up, but aware that in a way, I had jumped the hurdle, even if we had fallen on the way.
I've been a carer for 17 years and I just turned 30, I always meet people who are pleased and full of compliments when I tell them what I do ( I sometimes wonder if this springs from a fear, flatter the carer we may need her one day:) as much as it is gratifying it's very tiring, mainly for me because it's my mother who I care for, so the immediate follow up question is "what happened?" this story I pretty much say word for word every time, till I realize I am numb and bored by relating it, even to kind people.
I'll tell you what happened later on.
A major part of care work I would describe as slop jobs, these are the jobs that you need to build up a strong stomach to do, if the person your caring for is totally dependent, toileting is the number one hurdle to jump over, it doesn't matter how good you are at it now, the first time is horrible, I was 14 and it was a fiasco, this will be my first story.
My dad was at work, and my auntie who lived with us left to go out with her boyfriend, so I was taking care of mum, not too long into it she told me she needed to go to the toilet, so I tried to call dad, but he was over an hour away, then tried to call my auntie but her phone was off, so in the middle of feeling furious at being stuck to do this, and panic,I put together a plan, I ran into the bedroom and pulled the mattress off the bed, dragged it into the living room and placed it next to her recliner, then I stripped the pillows off the coach and scattered them on the floor.
Mum was smiling vaguely at this commotion, I reached down to lift her trying to hook her arms around my back, and for about ten seconds we managed to balance, then we fell, ( I was 20 kilos lighter and she was on her tip toes, if we hadn't fallen it would have been a miracle!) so I gathered some garbage bags and towels and rolled them under mum, figuring I could just soak up whatever she did, ha ha, I hadn't thought about her moving her bowels, they where flying out like pebbles and I was running around like a chook without a head, being faced not only with a mess, but the first time no one to help me out, so I called dad yelling at him and trying to clean her up the best I could, oh god, it took forever, over an hour later it was over, I was exhausted, but mum was clean and comfortable lying on the mattress propped up watching Bonanza, and I flopped on the couch fairly shook up, but aware that in a way, I had jumped the hurdle, even if we had fallen on the way.
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